Triniti's Story

Smiley

2011-03-27T16:18:00.000-07:00

Trini has had a great week! I don't know why, but she is smiling all the time. I love it! We went to Newport on Wednesday. She loved it! I think her cheeks got tired from the smiling. LOL She was smiling so big that she made people smile when walking past her. I love it! She has been looking around a lot too, which is new. She seems to be improving more and more each week. I can't wait until it's nice enough to take her horseback riding! She is more alert than the last time she rode Magnum. It will be so much fun! It has been over a year since she has been in the hospital! I'm going to have to take her in for a visit to the PICU so they remember me. That is where I desperately want to work, so I need to keep up the contact for when I graduate nursing school....if ever.

Infection

2011-03-20T20:42:00.000-07:00

Trini has an infection in her g-tube. It's kind of a panic moment when I see it. She has never has a problem with it ever. I am calling the Dr.first thing in the morning. My poor baby! One thing after another with her! We just got her off one her seizure meds. I might have to put her back on it. :-( Her birthday is next week. 4 years old! Wow!! 4 years of ups and downs. We are getting more ups than downs now. Yay!

Make a Wish!

2011-03-17T22:03:00.000-07:00

Triniti got a letter from Make a Wish Foundation! She is getting a wish!!!!! I am hoping to take her to Disney land to meet Cinderella, see the starlight parade and ride the dumbo ride. They are supposed to get in touch with me within a month and she gets to go in 6 to 9 months. I can't wait!

Finally an update

2011-03-02T23:33:00.000-08:00

What a year this has been! A whole lot of nothing has happened. This month marks one year since she has been in the hospital. Amazing! She used to go in every three months like clock work. She has colds and maybe the flu, but nothing major. She did have pneumonia last week, but smiled through it. She wasn't getting any better, so we took her for another 3 hour Dr. visit with xrays to find out she has an ear infection. No wonder she has had low grade fevers and has just been droopy. So she is on meds. for that. She is now having tons of seizures because of the infection. Hopefully it will be gone soon. I hate it when my baby is sick! I think if we hadn't switched around Dr.s, she would have ended up in the PICU. I credit Dr. Mcdonald and Dr. Konkol for saving her life! Dr. Mcdonald put her on inhaled Tobramycin every 28 days for 28 days. It gets rid of any bugs in her trach to the tune of $4500! Worth every penny! Dr. Konkol suggested the VNS which has made her more alert, has less seizures and is generally more happy. Who knows where she would be if she had stayed with her old Dr.s? I know where, but don't want to think about it. I was putting her to bed the other night when I saw a hospital bracelet on the floor. I have a habit of keeping them to remember the visit. I picked it up and looked at the date. 12/17/07. The day she died on her bedroom floor when CPR failed to bring her back. The thing that really got me was that I was standing in the exact spot she was laying on as I looked at the bracelet. How strange that I found it there and stood in that spot! I wonder if God is trying to tell me something. It was just strange....

Medically Fragile Meeting

2010-08-25T18:58:00.000-07:00

Trini belongs to the medically fragile program. They pay for almost everything and she gets the oregon health plan because she is on this program. She has to re-qualify every six months. I am always nervous at these meetings. This one went great! She is getting more nursing hours. I don't know why. I probably won't use them. But they are there if we need them. We have a bigger budget now too. The lady from the county disability office was here too. She said Trini most likely qualifies for "Make a Wish". She is going to check into the whole family and possibly a nurse going to Disney Land! Yay!! I hope it works out! Apparently, disabled kids get to go the front of the line too. :-) Her m.f. caseworker said we should have the news do a story of before and after acupuncture to raise awareness on acupuncture and maybe get someone to pay for it. I think I may be emailing channel 12. We will see... Other than that, not much going on here. That is a good thing.

Update

2010-08-20T17:34:00.001-07:00

It has been a long time since I have posted!! Not a lot has gone on. She gets her VNS turned up every 2 to 4 weeks now. As soon as the Dr. turns it up she starts smiling. :-) It makes the Dr. smile. She had it turned up last Wednesday. She immediately started smiling and got really alert! She has still been having seizures, but the magnet makes them go away pretty quick. Since getting the VNS turned up, she has had only a few full-on seizures. She has been having one start and it goes away within a 1/2 second! I am so happy!! Trini is very alert too. Her eyes have been moving a lot and she has been smiling. It's so exciting!! She is going back to school in Sept. She got a cotton motorcycle jacket, a pleated skirt, knee-highs with ruffles and "ugg" boots. Soooo cute!!

Surgery

2010-05-17T19:37:00.000-07:00

She did great with surgery! I was so scared when it took longer than they said it would. I almost cried when they said she was in recovery. I was so relieved! She is not on any oxygen, which is amazing! She is a little painful, but she will get better every day. She is a trooper!

Surgery tomorrow

2010-05-16T10:10:00.000-07:00

Trini goes in at 8 am for her surgery at 10:30. I'm a little nervous, but feeling much better after Thurs. We saw the neurosurgeon who told us about all the bad things that could happen. I was a nervous wreck after that! She is a tough cookie. I'm sure she will be fine! She has been riding my horse. She seems to really like it! I think it's good for her. I can't wait to take her again. :-)

Update

2010-05-08T18:59:00.000-07:00

Triniti has been doing awesome!! We went to a new pulmonologist. He said Trini's vent is way too supportive. He wanted to put her in the PICU for a night to figure out good settings. He put her on Tobramycin 300 mg. for 28 days on and 28 days off. She used to be on Tobi 80 mg. when she was sick. This will prevent her getting sick. She is also on a steroid inhaler. Since starting all this, she has made huge improvements. She now holds her head up really well...even when bouncing on my lap, she smiles all the time and moves her head and eyes around to look around. Yay! She spent Thurs. night in the PICU, smiling when she was awake. We got her vent settings cut in half. The vent was blowing off almost all of her CO2. It went from 30 off the vent to 15 on it. Normal is 30-40. Wow! The Dr. said she should be perkier now. Good! Her neurologist suggested a Vagal Nerve Stimulator for her seizures. It is supposed to help her get off her medicines and will make her more alert and happier. I am so excited to get her off the meds! The Rep from the company came and talked to us Friday night. It sounds awesome!! It will reprogram her brain to help stop seizures. I wonder if it will help with other things. The Rep said the Dr. is usually 4-6 weeks out for a consult and then 4-6 weeks for surgery. She talked to the neurosurgeon last week. He had his people call us and they are getting her in for a consult on Thurs. and surgery on May 17th! Wow! She will get it turned on on her Aunt's birthday, June 2. They wait until 2 weeks post-op to turn it on. It will be 6 months to a year before we can think about weaning her off meds. That is a lot shorter than the three years that we have been waiting for some help for her. Three people have dreamed that she was talking. Maybe it will happen! :-0

Pulmonologist visit

2010-04-20T18:43:00.000-07:00

Trini saw a new pulmo. today. I was tired of the old one not giving me any answers, not being thorough and just wanting to give her antibiotics without even looking at her. The appointment took 2 1/2 hours. It was mostly waiting. I was a little irritated! He checked her CO2 level. It was 30. That is great! I was very worried about it because if it up, she will be sleepy. She has been sleeping a lot lately. She slept through her appt. today. He wants to do a sleep study to adjust her vent settings, which he said were too supportive. She is going to spend a night in the ICU to do this. As long as she goes home the next day! He is going to put her inhaled antibiotics 28 days on and 28 days off. She is also getting a steroid that she inhales. Hopefully all of this will help her! He didn't sound very hopeful. He said she may have lung damage from the Adenovirus and RSV she has had. I hope not! How scary! She is awake on the couch next to me right now. She's so cute! :-)

Interesting

2010-04-15T09:53:00.000-07:00

I really need to blog more. I forget about it. Trini has been to school a few more times. She woke up when they sang the goodbye song to her. She even smiled! Then, the third day she was awake the whole time and had fun. She brought home a lady bug that she put stickers on. It had her name on it and everything. I put it on the fridge. I was so proud!
She went to the neurologist yesterday. It was a good visit. He really listens to me. He is the best Dr. she has had so far! I told him about the sleepiness. He is convinced it is from one of her seizure meds. So, we are going to wean her off of it. It will take two weeks. Then she should be awake a lot more. She will have more seizures though. He said since they are small and short, it is not that worrisome. Then he told me she is a candidate for VNS...Vagal nerve stimulator. They put a little generator under her skin in her chest cavity and thread a wire up to her vagus nerve in her neck. It gives an electrical impulse that will lessen her seizures so much that she can greatly reduce her seizure meds. He said it helps improve mood and alertness too. It sounds great! It is a big decision though. We got a video to watch about it. Troy and I watched it last night. It is amazing what it did for a boy. He went from being in a wheelchair drooling to fairly normal. I know that is an extreme case, but what if it helped her? It takes a few years to get the full effect. I was sitting there watching thinking of how different she could be if we could get her off the seizure meds. The only concerns we have is that it is approved for kids over 12, it can cause shortness of breath and coughing. Those are serious concerns. The coughing will get better. We can talk to the company rep. about it. I am going to call and make an appt. with her. The other concern is infection after the surgery. So, this is something we really need to think about. This could be her miracle though! I just had a thought...after going to the PICU the first time at Emanuel, she was a different baby. Maybe it is because of the side effects of all of the seizure medicines! They can suppress brain activity. There has to be some reason that she doesn't cry anymore, yet her brain isn't any worse than when she was born!

First day of school!

2010-04-05T21:00:00.000-07:00

Trini is doing really good. She is off oxygen completely! Not even at night with her vent. Yay Trini! She had her first day of school today. The bus came to pick her up and she fell asleep. She slept the entire time. Goofy kid! Tristan and I got to go. It was fun. Trini was very popular with the other kids. Hopefully she will be awake on Wed. when she goes again. I think we are giving her too much Melatonin. I thought she was awake all night. Maybe not. So I am going to lower the dose and see what happens. She went to acupuncture later and as soon as she got in the building, she smiled. Then when she was on the table getting ready for her needles, she smiled so big I saw molars! Silly girl! She looooooves her needles! Hopefully tomorrow will be a better day with less sleep!

Happy Birthday Triniti!

2010-04-01T22:05:00.000-07:00

After sleeping until 6 pm, Triniti had a good birthday. She woke up at 6 and got off the vent and oxygen. She was perky and happy. We then went to acupuncture at 7, where she smiled for Dr. Johnson. She was so happy to be there! She is still doing great! Grandma, Great Grandma and Grandpa came for cake and ice cream. Trini got a huge ceramic angel. She got held by Great Grandma, her favorite person in the world. It is 10 pm and she is still wide awake and happy. Daddy has her now. I'm so glad she is doing good! :-) Finally!!!

Better!

2010-03-31T22:54:00.001-07:00

So, once again Trini grew out pseudomonas in her trach. The Dr. started her on Tobramycin. We have our own supply on hand for such an occasion. She started doing better after the first dose. She started Monday. She went to acupuncture on Tues. Her heart rate was 135 when we went in. She was on Valium because she was having seizures. When we left, she was at 115! She went down to 111 at home. She loves her acupuncture! Today, Wednesday, she is doing awesome!! I even got smiles! She got a light up fan for her birthday. I couldn't wait, so I gave it to her. She smiled just a little when she saw it. Her heart rate has been down all day in the 120's after a rough morning. She had a long nap from 4-8pm. and woke up super happy. She was communicating with me I swear. I told her it was her birthday tomorrow. She smiled and raised her eyebrows. It was so cute! She is so excited to turn three. I am going to spend the whole day with her. We are going to my friend's house for a visit and then off to the mall to find a hair bow to match her first day of school outfit. Then at 7, she gets acupuncture. We are going to have cake and ice cream too. Of course she will get some. She starts school on Monday. I can't believe it! I think I"m going to cry. The bus comes and gets her at 10:07 am. She will be back around 1:15 pm. It will be so weird without her here. Of course I am riding the bus with her on the first day! :-) Brittany wanted to see her off to school, so I am letting her go in late. That is sweet. Trini has the cutest "first day" outfit! It is aqua colored leggings with a matching tutu and shirt. So cute!!! We must find a matching hair bow! I can't wait! I am so glad she will be well for her birthday and for school! I was really having my doubts! She is a fighter!!!

Sick again

2010-03-27T11:11:00.001-07:00

Trini has been coughing a lot and still on oxygen. I got a little worried, so I called the pulmonologist. The nurse said I may want to take her to the ER. I don't think so! So, she made us an appt. We went and in and he had a machine that measures CO2. It was up to 65. Not good! He said it may even be higher. So he bagged her to see what that would do. Her CO2 came down to 45, which is just about normal. So he said she needs to be on the vent 12-18 hours a day. Wonderful. He said it will blow off the CO2 and it will make her want to breathe during the day. Also, she may be able to get off oxygen. That would be good! So, she is on the vent now. She desated to the 40's last night. We have no idea why. She has had some issues with it. Now she has a fever. Can she ever get better?! I am so tired of this!!! Hopefully she will be all better by her birthday next week.

Doing good

2010-03-21T17:42:00.000-07:00

She is doing really good! No more seizures and only one fever in the last couple of day. Dad was holding her so that may have heated her up. We might go home tomorrow. I hope so! It has been a long week! I am so irritated with the nurse manager of the home care nursing company. I asked her if the nurse could leave Triniti with Brittany if I wasn't home in time. She got back to me after a week and said no. She said I could get in a lot of trouble if I did. She said it is dangerous and what if something happens. I can see that if Trini was as unstable as she thinks she is. She gave me a long lecture. I asked her later who she talked to and she got this deer in the headlights look and had a long pause. She then said she talked to the Medically Fragile caseworker. I accepted that answer. I got to thinking about it and remembered the med. fragile lady telling me someone has to be over 18 to watch her if she is on a vent. So to me that means if she not on the vent, then she doesn't have to be over 18. So I called the med. fragile caseworker who said no she can't because it is not safe. She said her Dr. would agree. I still wasn't satisfied with that answer. I wanted to know if it was a law. I asked the early intervention people who said it should be fine. So, the nurse there called CPS who said it was not against the law! The police dept. agreed. That supervisor just made up her own crap. I am so tired of her! She causes so many problems! She pushes her opinion on me and my nurses. She shouldn't do that! So Brittany is going to watch her as long as she is not sick. It's so ridiculous that it took many people and many phone calls to get a straight answer!

Update

2010-03-16T11:45:00.001-07:00

She has been having tons of seizures. They have her on Ativan now. She has had fevers of 103. That would explain the seizures. The seizure meds have been low in her blood stream for some reason, so they are loading her up today. They got the Miralax does wrong. They were giving her 5 times as much as she should get! She was pooping her brains out! How do multiple nurses and Dr.s miss that? I was sooooo mad! I kept my cool because I want to work there someday, so I don't want a bad reputation. I was ready to rip someone a new one though! They say she may come out of the PICU in a day or so and go to the "floor". I don't want her there after our first experience. That nurse was an idiot!

Were baaaaaaaack!

2010-03-12T17:33:00.000-08:00

Trini is back in the PICU. She has been doing really well up until she got the crappy cold the whole family had. It hit her hard. She has had tons of secretions and lots of seizures. She was breathing very rapidly yesterday so I called the Dr. and they told me to take her to the ER. We had a very rough night! She went to the regular floor first. They transferred to the PICU at about 4:30 am when she was seizing every 5 minutes and they couldn't control it. They were so unorganized on that floor. I was getting irritated with the nurse who wasn't very friendly and didnt' seem to know what she was doing. If we go back to the floor, I am requesting we not have her. Trini finally settled down about 5 am. and got some good sleep. They haven't fed her since yesterday at 2 pm. I feel sooooo bad about that! Why make her go hungry too?! Hopefully this visit will be shorter than the last! I had to go down to the ER because of chest pains. It turned out to be stress...well they didn't know what it was. They gave me Ativan that makes me feel good, but I am still getting sharp pains. Well at least I know I'm not having a heart attack! I am under just a little stress!!!

Sick again

2010-03-05T13:22:00.000-08:00

Trini finally got over her ear infection and was doing great. Now her and I are both sick. Tristan shared. How nice of him! Before this cold, Trini was smiling up a storm. She was super happy. Why does she have to get everything?! I was just told that Brittany can't watch Triniti. If she does, I could get in a lot of trouble. I asked the person who told me (the nursing supervisor) who told her and she got this dumb look on her face and fumbled. I'm not sure she is right. So, I put in a call to Trini's case worker. I remember her telling me that for someone to watch a child on a ventilator, they have to be over 18. Well, duh! I can't wait to find out! Once again, I have no nurse. Our new one that was driving me insane with her talking Friday, called in three times this week. That was every one of her shifts. Needless to say, she is not invited back. I am so tired of these nurses!! Why can't they all be like Charolyn?! LOL She's great! Trini is still on O2. I think she will be until she gets over this latest crap. :-( We were so close to coming off! She could be off yesterday with low sats. Now today, I take her off to suction her and she desats immediately. Hopefully she will get rid of it soon!

Ear infection

2010-02-25T22:39:00.000-08:00

Triniti's ears started bleeding yesterday after her nurse cleaned them out. At first, we thought it was capillary blood, but then they started to bleed really bad by last night. I was freaking out just a little. I thought about going to the ER. It wasn't really an emergency though. So, I called the Dr. this morning when she woke up with pools of blood in her ears. We brought her in right away and there was so much blood that her Dr. couldn't see her ear drum. She thinks they are both perforated (holes). She said it was probably trauma that led to an infection? What kind of trauma would that be? I don't think her nurse went in that far! After thinking about it, I realized that Trini had very dark ear wax. Like bloody wax probably. I think she had a double ear infection that we didn't catch and it burst her ear drums. The blood had been there for a while and when the nurse got the wax out, out came the blood. So she is on ear drops to clear it up. If that doesn't work, we have to see an ENT to suction out the blood and see what is going on. What a scare that was! She is still on oxygen. It is probably because she is still on Ativan to get her off the heavy duty sedation in the hospital. I can't think of why else she would need it. Hopefully it is not a permanent thing!!

Update

2010-02-18T21:46:00.000-08:00

Ok...I am a little behind in my blogging. Where to start? Brittany had a Dr. appt. on tues. so I had to leave. I hated to leave. She was doing so good. I asked the Dr. before we left if she could try being off the vent. The Dr. said she wasn't ready for that. I thought she was. Oh well. I came back hours later to find her off the vent and doing great! The RT, Debbie, that I really like said she twisted the Dr.'s arm. Yay Debbie! I was shocked! They cut her sedation in half so she was awake too. They said if she did good over night she could go to the "floor". She did great overnight. Wednesday they decided she could home the next day! I was shocked! :-) I was talking to a different Dr. later who said it would be a few days. I mentioned that to the nurse and he said she wasn't the Dr. in charge and Trini would go home on Thurs. I was so excited! So, today Troy, Tristan (the 18 month old) and I went to get her. We got there, packed up and that was it. The nurse had her all ready. As soon as I put her in her wheel chair, Tristan started pulling her out of the room. He wanted to take his sister home! It was sooooo cute!!! He pushed her all the way to the van and helped me wheel her in. She smiled when she went in. We got home and went to the park. She got to go in her swing. Then I held her for hours. That felt sooooo good!! Tristan keeps going over to kiss her and rub her head. He is so happy! She had a nice bath and is in bed resting comfortably now. What a roller coaster that was! We almost lost her three times! They did chest compressions twice when she turned blue. Scary! I am so greatful for the Dr.s, nurses and RTs at Doernbecher! They are wonderful!

Doing Great!

2010-02-14T11:47:00.000-08:00

Trini is doing awesome! They have weaned down the vent a lot. She is on 45% o2...down from 100%. Woo hoo! The other night she was smiling and I was rubbing her head. When I stopped, she did the cutest little squeak like, "Don't stop Mom!" She did it three times. How cute! I got to hold her yesterday for the first time. It was awesome! Our friend that we met at Papa's showed up yesterday unnanounced with a ham, chocolates, a balloon and a stuffed animal for each kid and a crate of oranges. He didn't know Trini was in the hospital and was very disappointed not to see her. That was so sweet! Today, I"m going to get Trini some cute Valentine's socks or something that she can have at the hospital. I can't wait to see her! I am spending time with the other kids for a while today after being with Trini over 24 hours yesterday.

Doing good

2010-02-09T13:19:00.000-08:00

Triniti is continuing to improve. After a blue episode and doing really good with bagging, they have decided to switch her to the "smaller" vent. Yay! Finally...a step in the right direction!! :-) Yay Trini!! Her eyes were open yesterday. It was good to see her awake. At first I thought I was seeing things. I'm not used to seeing her awake! She has been sleeping ever since. She keeps coughing and needs sedation. Hopefully that will get better soon!

Scary

2010-02-07T15:06:00.000-08:00

Trini had an ok night. She had another bad episode early this morning when they tried to move her. Now they are going to give her a paralytic every time they need to move her. Then, later after I got here the vent was chirping meaning there is a leak. I tried to fix it a few times to no avail. The RT came in to fix it. She had to take her off the vent and someone else bagged her. That is when all hell broke loose...again. Her heart rate went down to 44 and she turned blue. The pulse ox said she was at 100%. Her lips were totally blue. It finally caught up after about 5 minutes and she was at 25%!! Pretty soon we had two Dr.s, a few nurses and two RTs in here working on her. They gave her a paralytic and that finally calmed her down. They did a chest xray to make sure she didn't have an air pocket in her lungs...or the side of it or something. If she did, they would have to do a chest tube. How scary! Thank God she didn't! She has calmed down now and is doing fine. What a scary day this has been! Her CO2 is going up again. One step forward and two steps back!

Doing great!

2010-02-06T18:02:00.000-08:00

Triniti is doing really good. Her vent is continuing to be turned down and her sats are staying up. She has been needing a lot of oxygen though. The nurse was cleaning her mouth and Trini started coughing. She went down to 2% on her sats. It was soooo scary!! Her heart rate dropped too. We talked to the Dr. and told them Trini is now a full code instead of not restarting her heart. Her heart stopped once when she desated and she turned out fine. So I can't imagine if she desated and her heart stopped and they just let her go. Tues. was different. She was very very sick and if her heart had stopped, it would have been her giving up. It is different now that she is feeling better. She is very sedated to prevent her from trying to breathe over the vent and to keep her from feeling pain. The bad part is she doesn't wake up and look at Mommy. :-( I think she knows I'm here though. She has made little noises when I'm talking to her or kissing her. I love that! Just a little bit ago her heart rate was up to 139 and climbing. It has been down around the 90's. So, I think she was waking up and uncomfortable. I asked the nurse to give her more sedation. I hated doing that, but she needs to be comfortable! I am ready for this to be over! I want her home now! I miss my sweetie!!

:-)

2010-02-05T12:15:00.000-08:00

Triniti is continuing to good. She did have a desat episode though. The nurse turned her and she went into the 60's. That was scary. She had to turn her oxygen up to 80%. That was dissapointing because she was down to 60% on her O2. We think she had a plug that came loose when she was turned. So the nurse is going to suction her later with the respiratory therapist. Hopefully they can get some good stuff out! It's her usual...two steps forward and one step back. That's ok.She is doing great! :-) She is continuing to amaze everyone that knows her!

Doing Better

2010-02-04T18:14:00.000-08:00

Triniti is now down to 55% oxygen and is doing absolutely awesome! They keep lowering her oxygen and she goes down to 90%, but then she goes back up to 97% after she adjusts. They are pushing her and she is responding. I am sooo excited! The Dr. and the nurse are surprised. We thought we were going to lose her yesterday. She is proving she is a fighter and will not give up no matter what a virus throws at her. She is the most amazing little person I have ever known! I love my baby girl so much! :-) The nurse said the earliest we would go home is 2 weeks. That is a long time. I don't care as long as I do get to take her home!

Still here

2010-02-04T10:44:00.000-08:00

Triniti had the worst day so far yesterday. When I left the night before, she was doing great. Then the nurse called me on the way here and said she was not maintaining her temp. and her blood gasses were not good at all. I got really really worried and drove like a bat out of hell to get here. Her temp. went down to 95. Her CO2 was up to 90. Normal is around 30. Her oxygen was up to 100%. Room air is 21%. She was almost maxed out on the vent...the heavy duty vent. The nurse said the Dr. wanted to sit down and talk to us. I knew it was bad then. I knew what was coming. We had the dreaded talk and the Dr. said Triniti was getting sicker and they didn't know why. She said she could die. I knew she was going to say that. They are doing everything possible. We had the entire family and friends come to see her. The room was completely full all day. Triniti is very loved. Troy and I slept here because I was afraid to leave. I thought it was only a matter of time before we lost her. She started improving last night. Her CO2 was going down slowly and her sats were up and heart rate was down. This morning, her heart rate is staying down around 90, going to 87 at one point. Her sats have been 100%. I am so proud of her! They have turned the oxygen down to 75% and her sats are 94% which is still good. Her heart rate is good too. I think she has turned the corner. I am still cautious though. Anything could happen.

Scary day

2010-02-01T16:50:00.000-08:00

Triniti scared me today. I came in and her sats were at 88% to 89% and would not go any higher. They had her on 100% oxygen. Room-air is 21%. She then desated into the 80's. I had to bag her through it. Then the respiratory therapist came in and took over. She couldn't get her over 74%. She stayed there for a long time. Pretty soon we had a room full of nurses and two Dr.s in here. The Dr. was bagging her and still couldn't get her sats up. She went down to the 50's a few times. They tried different things to no avail. It was very scary! Grandma Rhonda was here and I thought she was going to start crying. She looked terrified like I was. Finally they got her sedated so she would stop coughing and got her on a different vent that shakes her. Her sats went up to 95% after a while. I had to leave so they put in a central line (a major IV). When I came back, she was at 99%. Yay Trini! I feel much better now after that horrible scare!

Still here

2010-01-31T13:31:00.000-08:00

Trini is still in the PICU. She has taken a turn for the worst. Her lungs are plugging and they keep having to give her Bicarb to loosen the stuff up. The Dr. said this is expected for what she has and they aren't too worried. I am! She has had a few seizures which is amazing..only a few! So the nurse gave her Valium and that really knocked her out.She has been sleeping for days now. I got her to look at me the other night. It made my day! I asked her to open her eyes and she did! We have no idea when she is coming home. They were saying maybe tomorrow. I doubt that. That is ok. She needs time to get strong and all better! Troy is going to pick the kids up today and bring them here. The boys can't come in because they are under 12. That sucks! I wonder what Tristan thinks happened to her. He's only 18 months, so he doesn't have any idea. He won't sleep in their room alone. It's so sad! No one but Mommy and Daddy have come see her. I am a little disappointed. Maybe today we will have some visitors.

In the PICU

2010-01-28T21:48:00.000-08:00

After calling Trini's Dr. and getting no where and the nurse bagging her most of the day, Trini went to the ER on Tues. They admitted her to the PICU. She has pneumonia and RSV. I was surprised that she is that sick! I had no idea! Her trach is too small, like we suspected. So, they gave her a bigger trach. The vent is working much better now. She has been sleeping for two days straight. This sickness is really taking it out of her. I feel so bad! At first they said she would come home on Friday, now they are saying Monday if she continues to do so well. Her temp. is going down. That is good! This morning she was at probably 101. I can't remember what the nurse said in celcius. It sounded high. Later tonight she was at 100. That is better. Hopefully she will continue to get better and come off the vent when she finally gets to come home. I'm sure Tristan is wondering where the heck his sister is. Poor guy! It's so hard on the other kids. I feel so bad!

Sick again

2010-01-25T10:26:00.000-08:00

Triniti is sick and on the ventilator. I had to bag her for 30 mins. last night while Troy set up the vent. Then, we couldn't get her stable on the vent. I almost called 911. I was scared! I had a bad feeling when I went to bed. I thought something was going to happen. We had an ok night though. Only had to get up a couple of times. I have a call into the Dr. to see what we can do for her. I hate it when she's sick! I feel so bad! The whole family has been sick. One by one we got it. It sucked! Troy and Brandon got it the worst. Tristan has had a cough for a while. This one really kicked our butts! Brittany hasn't gotten it...so far.
Trini went for an EEG last week. It is the same...burst suppression pattern. She has the same brain waves as someone in a coma. It was like getting the news all over again. I really thought there would be some improvement since she was doing so good and seeming to respond. She had more activity when the bright lights flashed. I wonder what that means? We see the neurologist on Feb. 19. I have so many questions for him! I just want her normal!! I know it is probably impossible. I can hope though, can't I? Trini is down to acupuncture once a week and is doing good. She seems to be doing better actually. Hopefully that is a good sign. She definately is a stubborn little fighter!

Doing Great!

2010-01-09T21:10:00.000-08:00

Triniti is really doing great! She is getting acupuncture once a week now. That is down from twice a week. We have tried it in the past and she didn't do so well. But now she is doing great after missing a day last week. So we are going to try it and see how it goes. It's going to be weird not seeing Dr. Johnson twice a week. We have gotten so used to our routine. She changed the day this week and we ended up going in on the regular day. We were a day early. LOL Trini is smiling a lot more lately. She is so happy! Her nurse said she is on a schedule now. She knows when it is time to do switch toys. At 12 pm the other day she started moving her hand like she was pushing her switch. Then the nurse got her toys out and she went right to it. Smart girl! She is starting school in April. I'm excited and sad. She is growing up. My baby is going to be 3 and in preschool. She is going to the early intervention school where she will be other kids like her. She gets picked up by the bus and goes two days a week for two hours. How exciting! :-)

Merry Christmas

2009-12-26T11:07:00.000-08:00

Trini had a wonderful Christmas. She is just amazing! She knew something was going on. She was asleep when I brought her out to the recliner. She immediately woke up and started smiling. She got some cool toys from Santa. She got an optic light that is a mirror with lights that chase each other. It looks like it goes on and on because of the mirror. She got a lady bug that lights up and shines stars on the ceiling. She also got a DVD that shows kaleidescopes and plays nice music. It put her to sleep. She was awake until we got to Great Grandma's house at 9 pm. She slept in Grandma's lap and was so happy. She woke up smiling this morning. She's so cute! Merry Christmas!

Stander

2009-12-22T11:20:00.000-08:00

Trini got her new stander at Shriners. Yay! She seems to like it a lot. The therapist said maybe later we can try a motor. Then she can run over her brothers! LOL I put her in it last night with her tray and Tristan got her switch and put it on the tray so she could play. How cute! Trini is just getting over an infection and now she has a cold or she is teething. My poor sweetie! Can she just stay well?! It's not fair!

Update

2009-12-20T11:49:00.000-08:00

Trini is doing so great! She doesn't have seizures at all for the first time in her life! I love it! She is pushing her buttons on her switch toys a lot more. She knows what it is. When I bring her out to the couch in the morning, she turns her head and her eyes move. She is looking around! I am so happy that she is doing so well! She got to see Santa on Friday. She liked him. Little brother hated every second of it. It was funny! Then she got her ears pierced. She got CZ white gold studs. They are very pretty. I felt so bad doing that to her. I almost chickened out. She was asleep, so I was hoping she would just sleep through it. She opened her eyes 1/2 way and her tongue moved like she was interested. That was about it. I think it surprised her more than anything. She looks even more beautiful with her earrings! :-) She got sick last Sunday. She had green goop in her trach. I was surprised. She hasn't had an infection in months. So she got antibiotics and she is fine now. She is such a strong little fighter! She is getting her stander at Shriners tomorrow. I am so excited! We have been waiting probably a year for it. It takes forever to get anything approved through the state. Of course Kaiser would never pay for it! Thank God for secondary insurance! It has been a life saver! Kaiser is ridiculous! They won't pay for anything! God forbid you need something extra! I am so greatful for OMAP! Trini now smiles a lot. It is not the automatic smiling when she smiles every three seconds. She gets excited and smiles at things. She is so cute! Today I was sitting on the couch next to her and she kept nugding my arm. It was awesome! I am so proud of my little sweetheart! She finally has a good nurse. We have always had a good one that works one day a week. Now we have one that fills in the other days. She spends all day right next to her playing and talking and snuggling. I get a little jealous sometimes. I don't have that kind of time. Tristan keeps me very busy chasing him everywhere. I have chores too. We get our snuggle time at night. I still worry that she thinks the nurse is Mommy. She says Trini knows I am Mommy. I hope so!! I am excited for the new year. I can't wait to see what comes. Trini is doing so good and making improvements every day. I think her nurse has a lot to do with it. She needs lots of attention! Of course acupuncture is a huge help too. We don't take Tristan anymore. So now it can be nice and quiet and she can focus on the needles instead of Tristan. We have seen an improvement since he stopped coming.

ER Visit

2009-12-03T21:26:00.000-08:00

So on Tuesday Triniti was having a seizure every five minutes. After about 50, we decided to take her to the Er. By the time we got there she had about 70. Poor girl! She was so exhausted. She wanted to sleep so bad, but couldn't. They gave her Ativan in a shot. She hated it. I guess that is a good thing that she had an opinion about that. They gave her a new med to help her out until the increase in her seizure med kicked in. They don't know why she was seizing so bad. I went to the bathroom and when I came back she had the sweetest smile for me! I loved it! So I took her home and she slept very well. She hasn't had a seizure in two days. Yay! Before all of this, she started having more cognition. I think they are related. I really liked her being more focused so it was really hard to increase her medicine. It supresses brain function. We can't have the seizures though. Can't they make a medicine that doesn't affect her brain like that? So now with her new med she is sleeping most of the time. It really sucks! Hopefully she won't be on it too long and her Topamax increase will kick in. She was pushing her button on her switch toys a lot. She would light up when a toy went off. It was so great to see! Troy noticed that she knew what the switch was when he put her fingers on it. She would get excited. I hope to get more of that when things settle down! I talked to the neurologist's nurse yesterday. She asked if Trini was getting her 2 year molars. I didnt' think about that. She must be. She has been a drool factory. That must be what it is causing the seizures. She has been very warm too. Poor girl! Hopefully my sweetie will feel better soon!

Fundraiser

2009-11-16T09:27:00.000-08:00

The fundraiser was a success! We only had about 60 people show up. But the people that did come were very generous! At the fundraiser we raised almost $2,000. So the grand total is $7500!!! Wow! People are so generous! I am so greatful for all of the help Triniti got. Troy's work did a raffle on very nice baskets and raised $800. Then, 5 of the 6 baskets came back to us for the silent auction! One lady gave us $1,000 and the owners gave us $500 for a total of $3,300 from his work! What great people! :-) Johnson RV donated $1,000 on top of the 2 3 day RV rentals they donated. Troy's parents gave $500. My parents played in their pipe band and donated all the utensils, drinks and other things we needed for the fundraiser. Troy's Grandma had all her artist friends donate beautiful artwork for our silent auction. Most of it sold, but we still have some left to sell if anyone is interested. One painting was taken out of the gallery window to be donated to Triniti! Wow! The performances were just great! The pipe band was wonderful! Takohachi was very loud and energetic. I loved it! They were a Japanese dance/drum group. Tristan fell asleep during this and slept through the pipe band. Silly boy! The pipes woke Triniti up right away. LOL The magician was just great! The janitor that was helping us, Diana, was wonderful. She went up and beyond. She even donated a ruby ring! I couldn't believe it! What a sweet lady! I am overwhelmed by the love and support we got for our sweet Triniti! So of course I went shopping already. I got her a timer for her switch toys. This is something she really needed but we couldn't afford. She got a special swing for the park for when the weather gets nice again...in 6 months. She also got an MP3 player with jeweled Hello Kitty headphones. I bought some relaxation and orchestra cds to go with this. She seemed to really like it. I am going to pay for a year worth of acupuncture on Tues. I can't wait! :-)

Toys and Equipment

2009-10-24T12:17:00.000-07:00

Troy suggested I have a wish list on here for items that Triniti would like. So if you are the type that likes to buy things instead of donate, here you go. :-) Most are pretty spendy, but you can at least get an idea of what we need and maybe find something cheaper.
Swing $175 Headrest for swing $38
http://www.flaghouse.com/Full-Support-Medium-Swing-Pommel-Seat-item-4699
Massage mat $110 or Vibrating pillow $15 or Vibrating tube $16.95
http://www.flaghouse.com/Full-Body-Massage-Mat-item-37540
Patient positioner $135
http://www.flaghouse.com/Full-Body-Massage-Mat-item-37540
Powerlink Box $299.95 (Really need this one!)
http://www.flaghouse.com/ABLENET-PowerLink-3-item-32468
Head tilt switch $28.95
http://www.flaghouse.com/FLYING-COLORS-Head-Tilt-Switch-item-35264
Gumdrop Switch $26.95
http://www.flaghouse.com/FLYING-COLORS-Head-Tilt-Switch-item-35264
Versaform Pillow $188.95 Pump $62
http://www.adaptivemall.com/verforplus16.html
Disco Box $82.95
http://enablingdevices.com/catalog/toys_for_disabled_children/music-vibration-lights-sound-effect-toys/disco-box

Enablingdevices.com is a great website for toys and equipment. There are lots of (expensive) toys on there that she would love. She likes light up toys and we need head switches and gooseneck adapters. If you would like to buy her something and are not sure about it, please email Mere at tagrp@netzero.net
Thanks for looking! :-)

We have gotten her a great toy from generous donations. We got her a "Dalmation Chase" toy that is adapted for a switch. She hits the switch and it makes it go. The dalmations climb up the hill and slide down it. She is going to love and I can't wait to get it in the mail! :-) Thank you Millie, Doris, Patricia and the other lady that I can't remember her name (I'm sorry!!).

Awesome donation!

2009-10-13T23:32:00.000-07:00

Trinit's Grandpa Mike works at Johnson RV. They donated two 3 day RV rentals for the silent auction and made a monetary donation. They are so great there! :-) I am getting really excited for the fundraiser now. We met a really nice guy at Papa's pizza last night. He talked to us about Triniti for a while. He had a boy that had a bad accident at 9 and was at Shriner's for 10 years so he knows what it's like. He teaches at a Four square church...where they have 18 pastors and 6000 members! Troy gave him a flyer and asked him to come. He is doing better than that. He is going to make 100 copies and distribute them all over town and his church! He said he is well known in the community and can get some interest in it. Yay! I am thinking I am going to need more than one cake. LOL
Triniti took a bath with me in the jacuzzi tonight. She got to float. I held her head. She really liked it. She relaxed and just floated there. It was nice for both of us. :-)

Triniti rolled a ball!

2009-10-11T19:02:00.000-07:00

I think I posted a blog about this before. Well here is the proof! Hopefully this works! This is Trini rolling the ball two days after starting a chinese herb called Ligaplex. It is absolutley amazing!!! This is the girl that they basically said would be a vegetable. Can you say, "WRONG"?! :-) I'm so proud of my little angel!

Fundraiser

2009-10-06T17:47:00.000-07:00

The fundraiser is coming along. I have the Pipe band, a magician and possibly a japanese dance troup. I'm getting excited! We still are in desperate need of silent auction donations. I don't have anything yet. I don't want to have to cancel that part. Hopefully I can get some items! I sent out a bunch of donation letters to local businesses. Hopefully that will generate some donations! I am just waiting to hear about the venue now. It is in the approval stages right now.

Tunnel by Third Day

2009-10-03T21:54:00.000-07:00

My friend Pam had this on a video of her daughter. It is the most perfect song I have ever heard! I can't figure out how to get the song to play. I will do it though!
Well I won't pretend to know what you're thinking
And I can't begin to know what you're going through
And I won't deny the pain that you're feeling
But I'm gonna try and give a little hope to you
Just remember what I told you
There's so much your living for

There's a light at the end of this tunnel
There's a light at the end of this tunnel for you
For you
There's a light at the end of this tunnel
Shining bright at the end of this tunnel for you
For you
So keep holding on

You got your disappointments and sorrows
You ought to share the weight of that load with me
Then you will find that the light of tomorrow
Well it brings new life for your eyes to see
So remember what i told you
There's so much your living for

There's a light at the end of this tunnel
There's a light at the end of this tunnel for you
For you
There's a light at the end of this tunnel
Shining bright at the end of this tunnel for you
For you
So keep holding on
Keep holding on

So remember what i told you
There's so much your living for

There's a light at the end of this tunnel
There's a light at the end of this tunnel for you
For you yeah
There's a light at the end of this tunnel
Shinging bright at the end of this tunnel for you
For you yeah
There's a light at the end of this tunnel ooh
For you, for you yeah
Shinging bright at the end of this tunnel
For you, for you
So keep holding on
Keep holding on
Keep holding on now

You got your disappointments and sorrows
Im gonna try and give a little hope to you

Fundraiser

2009-09-28T21:03:00.001-07:00

So we are one step closer to Trini's fundraiser. I got a magician! I am so excited! I saw him at a neighborhood picnic. He was great! He is really funny and a lot of fun. He is going to do the fundraiser for free. He just wants to pass out flyers. If anyone wants him for a party he is at partymagicandballoons.com I have heard his prices are very reasonable. I am so nervous about this fundraiser. I just want it to be a success. I don't want people to be bored or it to be unorganized. Hopefully all will go well. :-)

Triniti rolled a ball!!

2009-09-21T21:43:00.001-07:00

She rolled a ball smiling every time she did it. She was proud of herself! :-) I was in shock when I saw her do it. She did it every time we told her to. She tried really hard to roll it back too. That was harder for her. I am convinced it is acupuncture that did it. She has come so far! I can't imagine where she will be this time next year! The stupid video won't load. I will work on it...

Triniti fund

2009-09-19T14:26:00.001-07:00

I opened up a bank account for Triniti. Anyone that wants to can make a donation for her at any First Tech Credit Union. Even $5 would help! You can also mail it to First Tech CU PO Box 2100 Beaverton, OR 97075-2100. It is in her name...Triniti Gossett. We are getting closer to her fundraising event! I'm excited! We have a venue. Brandon's school lets people use the gym. This is coming together! I have a letter almost ready to go out to businesses. Make a donation to her account and I will mention you in her blog. :-) http://trinitiannelisegossett.blogspot.com/

Good day!

2009-09-15T21:52:00.000-07:00

So, an update on Trini's pulse ox. It is being sent back to be fixed or we get a new one (we are pushing for a new one). It was still under warranty. Stupid Apria lied and said it wasn't. We have another year. Grr! So that is taken care of.
Trini ran out of B-6 a few days ago. She has been getting it for myoclonic (muscle) jerks since she was a baby. She has gotten more and more alert since we took her off it. Coincidence? I think not. LOL I looked up the side effects. Nausea, drowiness, headache, fatigue. Oh really?! So we are staying off it now since the jerks are gone. Yay! One more step ahead!
She went to acupuncture today. Dr. Johnson said she is her favorite patient. :-) Her cutest too! She was really smiley. She looked like she was up to something. I said, "Yeah..she's going to fill her pants as soon as we get in the van." She smiled really big in response to that! LOL Silly girl! Dr. Johnson gave us chinese herbs. One is for her immune system. I have seen it work in one day. The other is for soft tissue and we are getting another for neuro. We then went to her neuro appointment. The DR. was very impressed. He was smiling at everything saying to keep doing what we are doing. He has no idea what is working, but it's great! He said she may be maturing. Yay! That was the best neuro appt. ever. She even gave him a half smile. He said the chinese herbs Dr. Johnson gave us looked really good. Yay! After that appointment we got my van. It got converted into a wheelchair van. It's so cool! I push the button to open the door and a ramp comes out and the whole van tilts. We just wheel her in and tie her chair down and put a seat belt on. It's so nice! It looks like it's lowered. There a few problems that need to be fixed, but they are taking care of it.
We are doing a fundraiser for Trini's acupuncture and special toys. My parent's pipe band, The Fort Vancouver Pipe Band will play and maybe a couple other bands. We are charging $10 a ticket. We are going to have face painting and balloon animals and a silent auction. It will be fun! My neighbor, my nurse and couple of friends are helping me. I'm very excited! We just need a venue to really get started. We are working on that now.
Things are really looking up! I feel like we have almost everything we need for Trini. It has been a long two years, but it's getting there! We just need to keep her healthy! Speaking of that...I am terrified of this swine flu. She would not survive it. I'm not sure Tristan would either. They are getting flu shots ASAP!!

Trini got her 2 year pictures done finally. She was smiley that morning so I made an appt. By the time we got there in the afternoon, she was 1/2 asleep. We got some cute pics. though. They did a great job with her. We went to Portrait Innovations.

Unbelievable!

2009-09-04T13:07:00.000-07:00

More pulse ox drama! Troy called GE, the maker of our pulse ox, to see what is going on with the warranty and the crappy repair. It is still under warranty...until June or July 2010! It has a 3 year warranty. Apria said it is not under warranty at all. So it is going in for repair again after Apria gets our name put on the serial number so we can deal with it. They have Apria listed as the owner. We want a brand new one. This is ridiculous! So the guy at GE told us they got the unit on May 7 and shipped it back to Apria on May 22 after testing it for 24 hours and updating software. That is all they did. They didn't even fix it! So anyway...we got it back two or three months later! Where the hell was it that whole time?! That is our equipment that Apria kept for months for no reason! So Troy has left a message with the equipment supervisor at Apria and is waiting for a call back. He is going to have a nice long talk with her about how freakin' stupid they are! I am soooo irritated!! Can I sue for them causing stress?!

Still sick

2009-09-03T21:46:00.000-07:00

All hell has broken loose. We got Triniti's appeal decision on her life saving pulse ox. The idiots at Kaiser denied it! Even after I said she could die in her sleep without it! They suggested this website with these crappy pulse oxe's that cost $50. A decent one is $800 (not on that site). Apparently they don't know what the hell it is and what it does! I am so stressed I have been crying all night. To top it all off she is still sick. The sputum culture came back and the Dr. took their time calling me. She has Staph and Pseudomonis and it is resistant to Cipro. She has been on Cipro to prevent infections. Well that didn't work, did it? So she got switched to Septra and Tobramycin. The Tobramycin is a pain in the ass to get because technically it is an injectable but Trini inhales it from a nebulizer. So we had stuff left over from a while ago that I was going to use. Well of course it expired August 1. The Dr. said to use it anyway while we wait for her new stuff. Kaiser had to order it. Trini had one good day after changing meds. and then went back to her same stuff. She has been having seizures like crazy. She has about 30 a day. Her heart rate is up and she keeps jerking and looking terrified. Her heart rate is up too. It is just heartbreaking! I want her trach out if she is going to keep getting these damn infections! What kind of life is it getting sick all the time? It makes it even worse when she was doing so good until this illness. She was smiling and responding. It was great! She didn't need oxygen at night anymore. She didn't really need the oxygen at night until a couple nights ago. We are back to that now. I am going to call the Dr. tomorrow. I am afraid she will have to go to the hospital for IV meds. :-( I am not too worried about it though. That would get rid of it! I just want her to feel better! I am so tired of this! I want my smiley happy girl back!
On a good note...we got a ramp for the house. So we just wheel her down the ramp to the van. I still don't have my van so we still have to get her into her carseat and put the chair in the back of van. I am getting my van in a few weeks. I can't wait! Maybe by then things will be better. How could they possibly get worse? I know all too well it can get worse.

Nursing company trouble

2009-08-21T21:30:00.000-07:00

She has been sick for about a week. She has a cold I think. She is having tons of secretions. They bubble out everywhere. It's gross. LOL So we have this new nurse that is new to nursing altogether. She just got her LPN license and started with us through PSA. She needs a little confidence. I asked if could have a little more orientation and the supervisor's answer was taking her off our case. I think she would have been fired. I told her no, we will deal with it. Nice attitude from the supervisor! So yesterday I was gone all morning. I came back and our nurse was frazzled. She said Trini was desating and turning blue with coughing. Usually she turns purple for me. She coughs so hard she can't breathe. We have to bag her sometimes while she coughs. So she said she called PSA and talked to the boss. She told her what to do. She even called her Mom who is an ICU nurse. I don't know why she didn't call me?! So anyway..I got home and explained to her that Trini won't do anything too scary unless she is super sick. She gets put on the vent at that point and that is when it gets scary. She might need to be bagged through coughing spells. That is a normal (yes..scary) thing. So she felt much better after that. I left for a while again. I came home with Brittany and saw a BMW in front of my house. That only means one thing. The nursing supervisor. I won't use her name because she is evil and might hunt me down if I do. LOL So I walk in and she is about to put Trini on her vent. I was beyond pissed! Trini was at 100% and her heart rate was 117. She was sleeping peacefully. I told her we don't put her on the vent unless we have to because she fights it and/or gets dependent. It is not worth it...unless she truly needs it. So the super got pissed and got an attitude like she knows better because she has a nursing license and I don't. Well I'm sorry but Trini is alive because of me not her! I almost told her where to shove her license! She told me Trini should be on the vent because she was breathing shallowly and needs a break. I told her as calmly as I could that she has a trach for that very reason! So she asked if I really didn't want her on the vent. I said no. So then she made it sound like it was great that she had it set up for me now. Well we take the tubing off when we store it because it can get dirty. So she wasted our vent stuff. She still acted like she did me a favor. Like it's so hard to set the vent up. I was so ready to tell her to leave. Then she sits on my couch and starts telling the nurse what she is doing wrong. I wanted this b*** out of my house! She finally left and my nurse starting apologizing left and right. She said the super had heard that she called in the morning and was in the neighborhood. I doubt that! She saw an opportunity to have a little power trip! That is why I don't like her. She has been nothing but trouble since the day she started. She fights with my other nurse, telling her everything she doing is wrong. It's petty and ridiculous! My other nurse is great!! My favorite person at PSA suddenly "retired". I think she was fired because the super didn't like her. It's very sad. So I have contacted another nursing company. It shouldn't be like this! This super doesn't even have kids!!! She has no idea what it's like at all. Ok...that was my little rant. lol

On a lighter note...
Triniti spent all morning today smiling. It wasn't the usual smile and stop. She smiled and actually held it! She was moving her eyes around and her head! She was looking around at where we were! I was so excited! My cheeks hurt from smiling! LOL Her first neurologist said there are seizures that make kids smile for no reason but she doesn't think Trini has them. The neuro at Dornbecher thinks it is seizures. I have always wondered because you can time them. They are every 3 seconds. Well today she got acupuncture. She was all smiley until the needles started going in. She got mad and threatened to hit the Dr. LOL Once the needles were in and they weren't bothering her she started smiling again. It's not seizures! Trini is doing so awesome! Even with a horrible cold. I'm so proud! I can't imagine where she is going to be in another 2 years. The possibilities are endless! I have incredible hope that I never would have had when this all started! Go Trini!!!

Udate

2009-07-30T15:45:00.001-07:00

Triniti is having the best week of her life!! She has been very alert and smiley. Her eyes have been moving like crazy. I think when she does that she is seeing things. She tried to splash in the tub the other day. She has only had oxygen at night twice in the last two or three weeks and that was after acupuncture. She may have been very relaxed. At acupuncture the other day the Dr. put a needle in her hand between her pointer finger and thumb (those hurt). Trini jerked hard and it came out. She tried again and she got it out again. She said we should skip that one. She had trouble with the other hand but got it in. Trini jerked and jerked until she got it out. It fell out of the floor. LOL She did not like those at all! We were laughing saying that one day Trini was going to hit her. Trini made a face and looked like she rolled her eyes! It was so funny! Last night her pulse ox went off. Troy went in to check on her and said she was just fine. There was no reason for it to go off. He changed her diaper and realized it was a little bunched under tush. Once she was comfy again, she settled right down and was fine again. We think she got upset when she was wet or that her diaper was bunched and got our attention the only way she knew how. She did the same this morning when she was soaked. She was wide awake and her alarm went off. I changed her and she went to sleep. She is such an amazing little girl! :-) I think it is the acupuncture! I 'm so glad we are doing it! I can't wait to see how much she improves overall.

Yay!

2009-07-20T11:03:00.000-07:00

Triniti is doing great! Last night her sats were 98% and her heart rate was 96! Wow!! No oxygen! She is doing soooo good! It is amazing what a couple of antibiotics can do. We may want to put her on them permanently. That is an option. She is always sick. She can't get better (brain wise) if she doesn't feel good!
Her van conversion got approved! Woo hoo! We are supposed to bring it in next month. No van for 4 to 6 weeks? :-( I am borrowing my Aunt's older van. It is great that is just happened to have a problem they dont' want to fix. They are donating it, but letting us use it before that happens. It is wonderful how things work out sometimes! We are getting a wheelchair ramp built too. Yay!

Vacation

2009-07-15T21:21:00.000-07:00

Before I get into the details of the vacation...the neurologist was great! He said we can try to take her off the Depakote and see how the jerks are. We are to wean her off over 6 days. If the jerking continues he wants to put her on some vitamin I have never heard of to get rid of them. We weaned her off and no more jerks! Yay!!
Vacation
She went to three states in 5 days. We were on our way to Chico, CA for a family reunion when we decided to go to Reno. We spent a whole day there. We arrived early in the am after sleeping on the side of the road for a while. Grandma and Grandpa Gossett were there too. Triniti went to Circus Circus where Daddy won lots of tickets playing games and spoiled her with stuffed things. It was so sweet! He's such a good Daddy. Then we drove to Chico for the reunion. She spent most of her time with Great Grandma or Grandma Rhonda. They just adore her. (Well who doesn't?!) We then went up to visit Daddy's friend Scott in O'brien, OR. She got licked to death by a mini doxie. It loved her. She didn't like it too much. LOL We went to a big cat park where they had like 30 different big kitties. Trini heard a lion roar! We then went to Winston, OR to the wildlife safari. She slept through the whole thing. It was pretty early for her. She woke up in time to go to the safari walk. She met a 5 month old camel named Vincent that ate her hair! He got all of it on one side in his mouth before Mom noticed. She really didn't like that! Her eyes got all big. It was cute! She met a mini donkey that stuck his head through a hole to sniff her and nibble her fingers. Then she got to pet a baby goat that did the same. The keeper brought it out just for Trini to see. She did great on her vacation. No problems at all. :-) She was so happy to be home that her heart rate went down to 117 from 140 while sleeping. She didn't even need oxygen while asleep! :-) She had a good vacation!

Triniti is home!

2009-07-07T17:54:00.000-07:00

She came home yesterday. Yay! She is doing great except for being a little more jerky. I think it may be her new medicine. It is very irritating! I want her off of it. We are going to the neurologist on Thursday. I am going to talk to him about getting her off of it. I don' t think she needs a second seizure med. just because she gets seizures when she's sick. We will see. We are supposed to go to Chico, CA for a family reunion on Thurs. We are renting an RV. When this all started I thought there was no way. Now I think she will be ok. I hope the Dr. is ok with it. If not, we are taking her anyway as long as we feel she is ok. She is our daughter!

Yay!

2009-07-05T22:06:00.001-07:00

Triniti is doing great! She has had barely any seizures at all. The ones she does have are tiny. She is off the vent and her heart rate is low. She should be coming home tomorrow! Yay! I can't wait to have my sweetie home. :-) I held her for 4 hours today. It was so nice. Her heart rate down to 106 at one point. She was comfy! They have her on lots of meds for her seizures. They kept her on Ativan. I am kind of irritated about that. It didn't do anything for her big seizures when she was having so much trouble, so why keep her on it? I asked them to take her off it before she goes home. They are going to wean her off because I said if she is going to have problems being off it, I want her to have them there and not home. They agreed. Sometimes it is so stupid what they do. I don't want her all drugged up. She is never awake. The neurologist is going to have to fix this! I will make sure of that!

Hospital update

2009-07-03T13:38:00.000-07:00

After having three horrible days of uncontrollable seizures every 3 minutes, she is finally calmed down and sleeping. She had no sleep for 3 days. It was horrible! They were giving her high doses of Ativan 'round the clock and it wasn't doing anything. Finally they gave her a Versed (pain med??) drip and some Depakote (seizure med). I am so happy to see her finally getting some well deserved and needed rest!! She had a CT yesterday that was totally normal. The Dr. said "she has lots of brains." LOL She is just wired wrong. It's so frustrating! While I waited for her Ct I was nervous and almost on the verge of tears. There was a nice couple there that asked me about her. That started the waterworks! I hate crying in front of people. Dangit! We talked about her until she came out. When I got up to go with her, the husband got up and gave me a big hug. How sweet! They made me feel so much better! The wife saw Triniti and burst into tears. So of course that got me going again. What a hard day yesterday was! Today is going to be much better! Her blood pressure is down, so they are giving her fluids to keep it up. She desats every time they move her so they aren't moving her as much. They think she has lots of mucous making plugs. The nurse got some 2 inch bugars out of her nose. Yuck! You know she's sick when she has bugars! They are usually in her trach. So, things are getting better. Thank God!!!!

Hospital update

2009-07-01T17:04:00.000-07:00

Triniti is having a hard day today. She was having big seizures every three minutes. It was horrible! The whole bed would shake. The neurologist finally came and watched her sieze. He told the nurse to give her 1mg. Ativan until she calmed down. She got up to 4mg. until she finally did. Now she is having them every ten minutes. Still shaking the bed. It is heartbreaking to watch. The asked the neuro. if it bothered her. He said adults say they don't have any memory of it so he doesn't think it was bothering her...just her brain. That made me feel a bit better. We might need to change her seizure meds. We will talk about that later. We are just trying to keep her comfortable now. A virus test came back positive. She has adenovirus. In adults it is like a bad cold. In kids like her with a trach it makes them very sick. Babies can die from it. That imediatley made me think of Tristan. The nurse said he is too big to make him that sick. Thank God! Hopefully we can avoid it altogether with him. I am going to keep him away as much as I can. So we need to support her through this nasty virus as much as we can and hope she gets over it soon. I am so glad this didn't happen when we were in Chico! We are supposed to go there in 8 days. I think that is out. Thank God it happened now! She got a picc line placed this morning so she can blood draws easier. I worry about infection with that. Hopefully she will be ok.

Hospital update

2009-06-29T15:49:00.000-07:00

She is doing better. She has a sinus infection with the bacteria going into her trach. She also has staph in her trach (common). My poor baby! They are trying to figure out which antibiotic is best. They have her a broad spectrum one now. She is still febrile but is on her home vent which is good. She started on the big hospital vent then went down to the smaller one and then her home vent. They are working on getting her stable enough to go home. Hopefully in a couple days. I hope so! Tristan and I got her a Tinkerbell balloon and an Angel worry stone (she collects angels).

Triniti is in the hospital

2009-06-28T10:53:00.000-07:00

Well the infection she started on Friday got a whole lot worse on Saturday. She had a little blood in her trach so I was considering calling the Dr. Then I noticed she was breathing really hard and her sats were only 90% with 2 1/2 lpm of oxygen. (Should be 100%) Not good! So I put her on the vent to give her a break. That made things even worse. She started desating. At one point I didn't know the vent had come off her trach and took a minute to get in there. She went down to 25%! So I bagged her and she came back up. I put her back on the vent and she was ok at 94% for a while. She started desating again to 86. I kept bagging her and trying to reposition her because she has a leak in her trach and repositiong often helps. That did nothing. I was getting very frustrated. I paged the Dr. about the blood when I saw it again. While I was on the phone with him telling him her sats were ok for now, she went down to 15, 10, 8, 7 and then 0. He very calmly told me to hang up and call 911. So I did while her Dad bagged her. They got here and took her to Dornbecher. This is a new hospital to us because we have Kaiser now. They are great there! It was not a 4 hour Er visit. More like 2 hours and they got her to the PICU. I even went right in the PICU with her! At Emanuel they make you wait in the hall while they get her settled which is so scary! You have no idea what is going on. They were having to bag her because the little vent they had her on wasn't working very well. She was going down the 40's. I was getting scared. At one point she had something in her airway and the Dr. couldn't bag her. I was so panicking. I wanted to yell, "Do something!" She had no breath sounds in her left lung. She went down to the 30's when they gave her something to break the mucous up and albuterol. I thought I was watching her die in front of me! I almost had to leave the room. I couldn't take the stress of watching her turn blue and watching that monitor go down and down. She would come back up and then turn blue again. I was agonizing! They were going to call and ENT to scope her to get the goober out. Finally they got her stable after I think about an hour. She did it again a while later, but not as bad. Troy came to get me and we went home about 1 am. I was soooo tired! So far I like Dornbecher a lot! They have a bathroom in the room, I can sleep there and there is no roommate! At Emanuel you have to leave to use a bathroom, can't sleep there unless you sleep in the recliner (if there is one) and they usually have a roommate in a tiny room. The nurses, RT and Dr. are great! I'm glad she is there instead of Emanuel. I talked to her nurse this morning. She said she had a good night and is comfortable. They are going to try to bring the vent settings down to let her breathe on her own. I am bringing her home vent to try (it is a huge step down from their vent). So hopefully she will be ok with her's. Everyone please pray!

Update

2009-06-26T10:41:00.000-07:00

Triniti has started acupuncture again after a little break. I just realized that her myoclonic jerks are totally gone! It's amazing! The only bad thing about that is she can't have a jerk and hit the switch to make a toy go off. She has to do it all on her own. The jerks were reinforcing the cause and effect for her. She tried a stander at Shriners. She absolutley loved it! She stood almost straight up for 30 mins. smiling the whole time. She even held her head up for about 5 seconds at a time. I was amazed! Now we have to get insurance to approve it. We already got a denial from Kaiser saying it's a convenience. How is a huge piece of equipment convenient?! It helps her bones grow and helps her bladder and bowel. We are going to appeal this stupid decision. OHP should pay for it if Kaiser doesn't. The therapist said we can try a stander with a motor and a head switch. Uh oh! Watch out everyone! LOL That would be fun! I can see her running her Brothers over for being pains in the butts! LOL I emailed her Dr. last week about some issues she has been having. She is always tired, has tons of secretions and is choking and coughing. She also gets fevers of 100.8 or so every day. I don't think she's sick. The Dr. emailed back and said she is probably dehydrated and to increase her water. She didn't say by how much. I was talking to her nurse about it and she figured it out. She needs 1180 mls. of fluid each day (including pediasure). She gets 800!!! I was so mad when I found that out! I emailed the Dr. back asking how much water. She hasn't gotten back to me. Then I emailed the nutritionist. She got back to me right away. She said Charolyn was right. She needs 1180mls. of fluid each day. So we need to add 480 mls! I asked how a Dr. and two nutritionists could miss this. She said she misunderstood the amount of water she was getting. My poor Triniti!! I feel horrible! I"m sure she does too! So she should be perky in a few days. You never know...she may be better than ever! We haven't increased her fluid intake in probably a year! You really have to know what it going on when you have a disabled child. You can't rely on others to do what is best for her! We are in the process of getting our van conversion approved. My Aunt is loaning us her van that they are going to eventually donate. Yay!! Thank God for Aunt Debbie! I would have had to try to get her into my tall Blazer. Not fun! The first bid we got was so high that the medically fragile department was shocked. They said they had never seen one so high. So we went to another place. Hopefully that one will be better. Keep you fingers crossed! I talked to the guy there about the changes it would make to the van. He said it will get slightly less gas mileage, will have more road noise and will have a higher center of gravity. That sucks! It will be worth it though! We can just wheel her in and lock her down instead of getting her out of her chair and into her carseat and then putting the chair in the back. It's heavy! So things are looking up. :-)

Acupuncture results

2009-06-11T15:00:00.000-07:00

The results of acupuncture have been nothing less than a miracle! She has been going twice a week for a few weeks now. She focuses on me now and smiles in response to things. Before she would do this "automatic smiling" where she would smile every 3 seconds. She would start it in response to things, but it would go on and on every 3 seconds until something made her upset. Now she will look me in the eye and smile once and stop! Then she will do it again when I say or do something she likes. Her eyes actually look different to me. I can't explain it. It's like the color is different or something... Maybe it is her being more "with it". I think I see it in her eyes. She has physical therapy a couple weeks ago and the therapist said she can feel her holding her head up better! That is amazing! She said her brain is improving. Some of her brain cells are taking over for the damaged ones. Woo hoo! Today I was playing with her. It was so cute. I had Tristan's monkey rattle. I shook it and she got the littlest smile. Then she smiled bigger and bigger until I got a great big one! Then we were sitting on the floor practicing head control. I had one finger under chin and a thumb behind her head and she did it on her own other than that! This time last year, she would have needed full support for her head. We just found out insurance doesn't cover acupuncture. It is $300 a month! Credit card here we come! Donations are being accepted!
;-)

Acupuncture

2009-05-19T13:53:00.000-07:00

We went for our first acupuncture session today. It was so weird! She started out with needles in her head. One of them made her arms move around a lot. We could actually see it working. The Dr. (she is a Dr., not just and acupuncturist) said that was a great response. She is very hopeful. Then she went to her legs. We got some eye movement and more arm movements there. Trini seemed to really like it. We are going to go two to three times a week for a month. The Dr. said there is a brand new study on cerebral palsy and tongue points. We are going to try it depending on how she does with the needles themselves. She said there was an immediate obvious change in the patients that had it. I am very excited! I am going to call her pinhead today because she had all those needles in her head. LOL

2009-05-18T18:08:00.000-07:00

Trini is continuing to amaze me. Yesterday she was sitting in her chair. Her head flopped forward and she tried really hard to pick it up! It got 1/2 way up and fell back down. She shook her head like dangit I didn't do it. LOL She is going to be in the Jr. Rose festival parade for Shriners! Yay! I can't wait! It will be fun! :-)

Triniti is doing great!

2009-05-15T16:40:00.000-07:00

She has been so smiley ever day. I love it when she smiles! It is so cute! I was talking to Troy about it. It seems kind of weird that she smiles when nothing is going on. I was thinking it was just twitch or something. He reminded me that she never smiles when she is sick, only when she is feeling really good. Good point Dad! It must mean she is feeling good and happy. :-) I got information on stem cell therapy in China. It is $17,000 to $34,000. That is a lot of money for something we don't know for sure will work. She is seeing an acupuncurist on Tues. I think this is the one that is a Dr. too. Insurance will pay for this. I'm excited! She called today to get her Dr.'s info so she can ask about her scans and things. That way she will know the best treatment. I'm excited! I hope it helps her! Maybe this is the miracle we have been waiting for. I am not getting my hopes up too high. But it just may do wonders. :-)

Trini is so fun!

2009-05-13T22:36:00.000-07:00

She has been really smiley all day. I love it! Tonight I was holding her and noticed her diaper was a little full. I asked her if it would be a one wiper or two. She shook her head as if to respond. She shakes her head no a lot. I think sometimes she is trying to communicate. So I said is it a one wiper? She shook her head. I said is it a two wiper? She didn't move much. I did it a couple times and got the same response. It was a two wiper. LOL Later, I was reading her a book and asked if she saw the bear. She shook her head no! I wonder if she really is trying to communicate?

Mother's Day

2009-05-10T21:52:00.000-07:00

I had a great Mother's Day! Triniti was smiling at me this morning when she woke up. That was sweet. I was telling her how pretty she is. She seems to really like that. She smiled. I asked for a big one. Sometimes I get it. She tried really hard this morning. I got some little quick ones. The miracle came later. We were at Aunt Debbie's house. I was holding her and she was sitting up with me supporting her head. I said something to her and she turned her head to look at me! I was amazed! I was even more amazed when Grandma came over and said her name. She turned her head to look at her and raised her eyes to look at her face! I couldn't believe it! She is such an amazing little girl! I am so proud of her! She keeps making little improvements. I love it! I truly believe that someday she is going to be pretty normal. She probably won't be completley normal, but close.

Care Conference

2009-05-08T23:17:00.000-07:00

We had a care conference on Tues. with her new Dr. I really this new Dr. I loved Dr. Palmer (her old one), but he wasn't good with the whole picture, just little things. Dr. Mcphee is going to manage everything. She asked who all her Dr.'s where and what they do. She is going to refer her to the therapy program at Doernbecher. Triniti's two nurses and their supervisor came. That was great! One nurse came on her day off. How sweet! I have a couple of great nurses! I am so greatful! Triniti has been pretty sick with coughing fits and low fevers. The Dr. said it's a virus. Will it ever end? Tristan has had it for a month! There is nothing we can do for Trini to help her get better. It sucks! Trini wore a mask to the Dr. to prevent getting swine flu. I am so scared she is going to get it! There were coughing toddlers everywhere in the waiting room. She looked so cute with her mask on! So today, Trini is still coughing. :-( I wanted to take her outside in the sun even though it wasn't real warm. She fell asleep after a bad coughing fit. That sucked! She has been coming in my room and watching tv with me at night. She is so snuggly! I fell asleep with her last night. :-) I met a lady on Facebook with an adorable little girl with CP. She did hyperbaric oxygen therapy and it helped. I have read about it before. I want to try it with Trini. If it won't hurt her it's worth a try, right?!

April 27

2009-04-27T12:47:00.000-07:00

I hate this day! On April 27, 2007 Triniti was home from the NICU for 3 days when she stopped breathing and turned blue for the first time. I did CPR for the time of many. It was the last time I ever heard her cry. She spent the next 2 1/2 months in the PICU at Emmanuel almost dying. This is when it all started. This is going to be a very hard day. I will never forget that day two years ago. I still remember the look on my neighbor's face as I was doing CPR. I remember exactly where everyone was standing (both Grandmas and my neighbor Renee), where my Mom was when she called 911. It is permanently imprinted in my brain! I remember her head flopping over on my lap and the vacant look on her face when I did CPR on my kitchen counter. I even remember my Mom laughing when she told the 911 operator that Trini tooted. She said it was a good sign. I wish I could erase these memories from my mind! Your child almost dying is not something you will ever be able to even come to terms with. I still have the outfit she was wearing that day. It is in her memory box. One good thing is that I have stopped blaming myself. For a while I thought what if I had just gotten to her sooner? What if I had the apnea monitor on her? There was no way of knowing this was going to happen. It was no one's fault. I am so happy she is still here with us! It has been two long years and she is going strong (except for her little cold or whatever it is). I love her so much! I am greatful for my special little Snookie!

Trini is doing much better!

2009-04-27T12:46:00.000-07:00

I got a smile today! :-) That must mean she is feeling better. She was off oxygen for the whole day yesterday and didn't have a fever until about 7 pm. Today she has no fever but is still on oxygen. We are taking it one day at a time. We might be able to go for a walk. She loves being outside!

Trini is still sick

2009-04-25T11:00:00.000-07:00

Triniti had a bad day yesterday. I came home from garage saleing and the nurse was bagging her. That was scary! Apparently she had a coughing fit and wasn't breathing. Then she was breathing only 10 times a minute. A kid her age should breath around 30. So we put her on the vent. I hated doing it. She has been doing so well. She hasn't been on the vent for months and months! So I called the Dr. thinking I would have to take her in. I thought maybe she would be hospitalized. The nurse wasn't too concerned. She said Trini just got tired and needs some help. The trach culture didn't grow anything out. No infection?! It must be pneumonia. Her lungs are tight, so the Dr. gave her Prednisone. That seemed to help. So Trini stayed on the vent all day and slept. I went to suction her and all hell broke loose. She desated all the way to 20!!! (She is supposed to be 92-100). She was completly blue! I yelled for Brittany to help me in a panic. I had to bag her. It seemed like it took an hour to get her back. I know it was maybe a minute, but it seemed like forever. I was so scared after that to move her or do anything. She has been fine since. We didn't get much sleep last night because she slept on the couch since that is where she was when the vent was hooked up. She kept jerking and pulling the vent off. So she would desat and her vent would alarm. She is doing great today. She is breathing over the vent. I am going to take her off after her prednisone. I hate it when she's sick! I get so worried!!

Poor girl!

2009-04-23T20:43:00.000-07:00

My poor sweetie is very sick. Tristan got a cold and shared. Such a nice brother. When she gets a cold it always turns into something much more. It is probably pneumonia. The Dr. never sees her anymore. He just gives her Cipro over the phone. Last night she had a temp. of 104.5. That's nothing for her. She has been 106 a few times. So I gave her a bath to cool her down at 11pm. It went down to 102 so I put her bed with oxygen, cough medicine with codeine, Tylenol and Ibuprofen. It seemed to help. She finally calmed down and slept until 5:45 am. She started gurgling again so I went in to suction her. The worst part is the coughing fits. She coughs so hard she turns purple! I had to bag her earlier tonight. Her fever has been lower today. I think it was up to 102 at one point and then she got down to 98.8. I hope she gets better soon! But it seems like it takes a month to get her all better. I miss her pretty smiles. :-( I'm glad I have two good nurses to take care of her!

Dentist

2009-04-16T20:18:00.001-07:00

Triniti went to the dentist yesterday. I was excited and dreading it at the same time. We thought she had teeth in the roof of her mouth. I was also concerned that she would have a hard time with someone looking in her mouth. She doesn't like it. She is getting better though. She has no cavities! Yay! The dentist said she won't get cavities as long as she doesn't eat by mouth. He said there is no bacteria being fed sugar. Her teeth are crooked because she doesn't hold her lips tight like normal. There are no teeth in the roof of her mouth. It is the normal bumps everyone has. Her's are just more prominent and white. She had a great visit. She was perfect. She made a horrible face when he tried to brush her teeth. She made a fist and acted like she was going to hit him. LOL Silly girl! She doesn't have to go back for 6 months. It was a good visit. :-)

Yay!

2009-04-13T17:16:00.000-07:00

Triniti belongs to the medically fragile program. It is absolutley wonderful! They give us things to keep her healthy and other stuff. We get hand sanitizer, Tide, paper towels, tp (for our nurses), hand soap and anything else she needs. They pay for the nursing care also. She gets the Oregon Health plan because she is on this program. So our Kaiser insurance pays and then OHP picks up whatever is left over. Well we needed to do an update. So I thought since she was doing so great she wouldn't qualify. I thought she had to be on the vent for a certain amount of time to qualify. So I was preparing to lose my nurses and the health plan. She does qualify! Yay! I asked the lady how we can the van converted for her wheelchair. She said the state pays for it! All we have to do is get a bid from two places and they will put in a lift and tie-downs. If we decide to trade our van in for one that is already converted, they pay for the converted part and we would finance the van part. They will also pay for a ramp for the house. I am so excited! The lady asked me if anyone has talked about sign language with Trini. I never thought it would be possible. She said it might be! I will have to pursue that. :-) So we had a good day today!

Easter

2009-04-13T11:33:00.001-07:00

Triniti got up bright and early and went to church. She loves church. I think she likes the singing. As soon as I wheeled her into her spot she smiled really big. Her brothers and Dad even went! Usually it is just Brittany, Mommy and Trini. Tristan had a response to everything the pastor said. LOL Trini got blessed by the pastor during communion. As he was praying for different people, he mentioned Triniti. He thanked God for her 2nd birthday. He prayed for her Mommy, big sister and little brother. I don't think he knew Brandon existed. Brandon was pretty bent out of shape. I told him the pastor didn't know him. I made sure to introduce him. Trini had a special Easter dress and matching butterfly bows. She looked so beautiful! Pastor Holland called and said he couldn't make it to her party yesterday. He said he loves her and prays for her all the time. He is so sweet! :-) I let Triniti listen to the message. She perked up a little when she heard his voice. She really likes him!
Her brother had a matching shirt. They were soooo cute!! As soon as I put him next to her for a picture, he undid her bow. Silly boy!

She fell asleep in Mommy's arm later. She had another big day.

Birthday Party

2009-04-13T11:04:00.000-07:00

Triniti had a great birthday party! She woke up in the morning and wasn't too thrilled. She had a bath and was still not enthuised. I got her party dress on and she perked right up! I told her she was getting extra pretty for her party. She was wearing her fanciest dress. Her eyes lit up and pretty soon she was smiling. She was so excited! It got me even more excited! :-) Brittany painted her nails hot pink. She was smiling for that. By the time everyone was here I think she got a little overwhelmed. She wasn't smiling anymore. She started having some trouble after a while. I think it was a bit too much excitement for her. She had a devils food and an a angels food cake. We had "Birthday Cake" and "Goo Goo Cluster" ice creams. I blended some chocolate cake and some birthday cake ice cream and fed them to her through her tube.

She got lots of presents! She got some pretty dresses, cute tops, socks and a cd. She got a fancy adapted ball toy that she can activate with a switch. Her little brother loves it!

She eventually fell asleep in Grandma Jackie's lap. She was so comfy!

She was asleep when we got hamburgers for everyone, so I put her to bed. She didn't like that one bit! She woke right up and wanted to come back out. Then she got very smiley while Aunt Joann was holding her.

Here is Trini and Grandma Rhonda.

Newspaper Article

2009-04-10T17:21:00.000-07:00

Triniti's nurse gave me the most wonderful article she found in the paper. It reads as follows..

"I am often asked to describe the experience of raising a child a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo "David". The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
'HOLLAND?!' You say, 'What do you mean, Holland? I signed up for Italy! All my life I've dreamed of going to Italy.'
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say: 'Yes, that's where I was supposed to go. That's what I had planned.'
And the pain of that will never ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

Charolyn warned me it my make me tear up. I thought I was tough enough to read it without tearing up. Wrong! It made me cry! This says exactly what it is like, minus the hospital visits and the worry if she is going to live through the next one. There is a permanent hurt that will never go away. It is a gnawing hurt that will eat at you if you let it. It also hurts when others brag about their "normal" babies, but that is life. I am greatful for her the way she is. I love my little girl so much! I am even more greatful for Tristan after having Triniti. He is my "normal" baby that I watch develop like Triniti never will. I can focus on just Triniti being Triniti instead of what she isn't doing. I can focus on what Tristan is doing. I love my babies! :-)

Guardian Angel

2009-04-06T11:35:00.000-07:00

I don't know if I have blogged about the guardian angel. There is a 5 or 6 year old boy I have been seeing. I first saw him in the baby's room. I saw a full head of brown hair out of the corner of my eye. When I looked he was gone. Since Trini came home at 4 months old, we have had toys go off on their own and have seen shadows. Troy saw one cross the room under her bedroom door one night. We have found Triniti totally tucked in with the blanket over her trach. We don't ever do that! She has desated and we go in to find that. I saw the boy a second time in my room. He was wearing a coat and a skirt. I was talking to the same medium that told me about Triniti about this boy. She said he is from victorian times (without me telling her anything about the outfit). He died of smallpox. How sad! Anyway...I saw him a few nights ago. I was heading to the bathroom in the dark and almost ran into his shadow! He was 2 inches away from me. He disapeared as soon as I saw him. The next morning Troy found Triniti very neatly tucked in. The blanket was over her trach and the blankets couldn't have been any neater. She couldn't have done that. Weird! I feel good having him hear. The medium said his mother is here too and little brother. I have never seen them. Maybe it is the mother caring for her. She couldn't save her children, so she is trying to save Triniti.

Seizures

2009-04-04T18:18:00.000-07:00

She has had an increase in seizures. I really didn't want to increase her medicine. It can make her more out of it. We increased it by 1/2 a pill last week and she became more aware! She kept having seizures so we increased it again. She slept in until 2 pm. Hopefully she will get used to it. She is going to start Lactulose since the insurance has decided not to cover Miralax anymore. I looked it up. It is also for some kind of encephalopathy...not just constipation. So maybe it will help her. Lets hope!

Triniti's birthday

2009-04-01T22:29:00.001-07:00

She had a great birthday today! She really liked her fish light. I gave it to her this morning. She smiled when she saw the box. She was awake all day long! I was worried she would fall asleep before presents or before we got sing happy birthday. She managed to stay awake until 10 pm.

I put her cake on her wheelchair tray and we sang to her. She was 1/2 asleep.
Then we opened presents for her. She wasn't too excited. LOL

Troy let his parents we know we got a cake so they came over later for a little party. It made me feel better that we were doing a little more for her birthday. She really perked up when she saw Great Grandma! She really loves her! So we got the cake out again and sang again. This time Triniti smiled when we sang. She kept smiling when I was talking about it being her birthday. I think she was truly excited. I told her we were going to have a big party and invite everyone she knows. Her birthdays are extra special because every year we have her is extra special. She got very excited about that too. :-)

Smiles

2009-03-31T22:39:00.000-07:00

We went birthday shopping today. I was wrapping all her presents...well putting them into gift bags. I said to the sleeping princess, "Wow! You got lots of presents!" She smiled really big! It was so cute! I couldn't believe it! She smiled again when I got excited. I think she was peeking too. LOL We got her a xylophone that also has big buttons that she can hit. We also got her an aquarium light. It lights up and goes around and around with tropical fish. She will love it! Dad adapted it so she can turn it on with a switch. We have the wrong kind of switch so he has to make the right one. I got her two peuter angels. She collects angels. One says, "When I count my blessings I count you as two. " The other says, "May miracles find you." Hallmark has tons of peuter angels. I as excited! She will have to collect them all! They all have different sayings. I got her a ceramic gaurdian angel that is over a praying girl that reminded me of Trini. It is very pretty. We also got her a colorful Dora book with a music player. She should like that. She has a catterpillar book that she just loves. Her eyes move all over when we read it to her. It's a very cute book! :-)

Update

2009-03-31T11:54:00.000-07:00

Triniti has been doing pretty well the last week or so. She has had a lot more seizures though. I don't know if something has changed or if she has outgrown her seizure med. So we increased it by 1/2 a pill. It is working pretty well. She is still having some breakthrough seizures. So may have to increase it again. I hope not!
Her birthday is tomorrow! I can't believe it! She is going to be 2. I had my doubts at times that she would make it. Now she is doing so good I think she will live a long happy life. I hope so! We are learning to manage her illnesses better. So it up to us to keep her healthy and happy. We are doing better with this. Troy has been birthday shopping since I am stuck in bed after surgery a week ago. I have never not birthday shopped. It sucks! He is doing good though. He bought some stuff to make switches and to adapt some toys for her. We are going to get an aquarium tv that we saw at Hallmark. It is very colorful and pretty. I think she will like it. We can put it in her crib so if she gets bored at 2 am she can hit the switch and watch the fish. Hopefully she will get it and be able to do it. :-) I think she will. She is very smart! Troy got her a hot pink massager. One of her nurses massages her with lotion after a bath. Triniti loves it! So I thought a massager would be great for relaxing her. It will be great for brain stimulation too. I want to give it to her now. I have to wait until her birthday though. :-) She is going to have to wait for her party. I wanted to do it this weekend, but I can't have a bunch of people over when I am still out of comission. So the next weekend is Easter. So it will have to the weekend of the 18th. She won't know.

Medium

2009-03-23T22:39:00.000-07:00

I had a medium contact me on Myspace. I am always weary of these people. You never know what they are going to say. I belong to a ghost group and she contacted me about a post I had on there. I asked her if she could tell me anything about Triniti, wondering if she would tell me any of the same things the other medium we went to see said. The last one said Triniti was an Indian (from India) man in her past life and was a chovanist. He was not happy to be a girl this time. Ok...weird! As I am typing this her monitor beeped. Weird timing! LOL So Triniti decided not to come fully into her body. I thought it was kind of silly. She did describe Brandon and Brittany to a T. They weren't there.
This is what the lady on Myspace said,
"Your daughter physically is trapped, but her mind is advanced. She understands everything, you two have been tied together in a past life. Colors fascinate her, not sounds as much. She is and old souls. She is actually content, and understands she is where she is supposed to be." Troy and I have always thought she was more "with it" than anyone said. She is a smart little cookie! As far as the colors comment goes, I think she is right on that. When I showed her a book the other day with colorful caterpillars, her eyes went back an forth and her little mouth moved. She doesn't do much when you play a sound or music. But when she sees something she likes you can tell. This was strange and exciting that this lady said this! I am not sure how much I believe. But wouldn't that be great if she was right?!
Before I asked about Triniti, we were talking about another subject. She said this, "i am hearing a pot, like it is boiling sound. odd." It had nothing to do with the other subject at all. It made me think of her trach. When she gets goobers in it, it makes a gurgling sound that could be like a boiling sound. Very strange! So I am going to talk to this lady more and see if she can prove to me that she is for real. I am not sure how I feel about the whole psychic or medium thing. It is kind of hard to believe. But sometimes they can tell you something they shouldn't know. We will see....

Went to the mall

2009-03-21T11:48:00.000-07:00

We went to the mall yesterday. The wheelchair really made it hit home that she is disabled. It is like when she was in the regular stroller I could pretend she was normal. In the wheelchair there is no pretending. People stared at her even more than usual. One teenager was turning around to stare. I was in a bad mood (because of Brandon) so I said, "Keep staring!" Do people not teach their kids manners? I tell my kids not to stare! I know people are curious, but you don't make obvious that you are looking! A few people said how cute she is. I liked that! :-) She is very cute! She could not have been any cuter! She wore a little plaid skirt with black leggings and tan boots. So cute! She was having tons of seizures so we had to leave. I had to give her Valium when we got home. I am going to have to call the neurologist on Monday. I think she may have a cold. Of course she can never have just a cold. It always turns into pneumonia or something else. But hopefully not. Hopefully she can fight it off.

Augmentative Communication

2009-03-21T11:21:00.000-07:00

Triniti went to aug. comm. on Thursday. There was an occupational therapist and a speech therapist there. They have these buttons called switches. When she jerks or moves she can push the switch and it turns a toy on. It will teach her cause and effect. She got to play with a toy there that made balls pop up. She seemed to enjoy it. So we are asking for switches and toys for her birthday in a month. This was good timing. No one ever knows what to get her. It is hard. I can't wait to get her toys! It will be fun!

Wheelchair!

2009-03-17T14:55:00.000-07:00

Triniti got her pink and black wheelchair today! She woke up smiling. It was like she knew what today was. She was very happy most of the day. We went to Emanuel to get it. We had her physical therapist look it over to make sure it was ok. Her head flops over a little because it isn't the right headrest. We will work on it though. I had a headrest in the stroller that I used. It worked great! Her chair has her name stitched in it! :-) She was pretty worn out when we got home. It was a big day!

2008 continued...

2009-03-08T15:43:00.000-07:00

I added pictures to the last post in case you didn't see....
This blog is not finished. I will finish it later....
So after Eyvonne we got Joyce. Just when I think it can't get any worse, it does! I really like Eyvonne. It was just the stupid things she did that made me mad. So anyway..Joyce was another nurse that used to work for us at night. I liked her a lot. We got along great. So I was excited to get her back. When the lady at the nursing agency told me she was coming back I couldn't remember her. The name sounded familiar but I couldn't picture her...until she told me she looked pregnant. LOL She was in her 50's and had this huge stomach and skinny legs. She never said anything about being pregnant, so we didnt' say anything. We didn't want to embarass her..or us for that matter. It turns out she wasn't. So when they lady told me that I remembered her and was excited to have her back. I shouldn't have been. She was a nut job! Apparently her last patient died (it had nothing to do with her). He was a little boy. She lost it and couldn't work for a while. So she came back is what they told me. Well her story was different. She says they wouldn't give her any work and the boss was lazy and all this stuff. I like her boss. She bath mouthed absolutely everyone. When Trini was sick it was ten times worse than it really was according to Joyce. She even had me freaked out when Brittany had a sore throat and a little weeze. I took her to the Dr. well Grandma did. It was nothing. Joyce thought she had strep and asthma or pneumonia! She told me all these horror stories about Kaiser that we had just switched to. She wouldn't do anything the way I wanted. I really liked her so I talked to her boss about it and told her I wanted her to stay but she had to change some things. Well big surprise she quit too. That was a relief though. So now we have Charolyn who was with Trini in the beginning. She is great! She is thorough and proffesional. We also have Rosemary who was with us in the beginning. We get along great. She loves Triniti like her own. That is how it should be! I swear they were sending me the wack jobs because I am so laid back and they know if they can't work with me they can't work with anyone! I was very rude to the agency one day when Joyce was here and that is what changed it. They finally figured out they can't do that to me. I am not going to put up with it. So I finally got the good nurses! Yay! There were a few nutty ones when she had her trach the first time too. One of the night nurses would not doing anything my way. It was her way and that was the end of it. You can't do that in someone's home! She was let go. Then we had another one that was so weird I swear she was drunk. I never smelled it though. She was good with Trini and we were always here so I let it go. They asked us this latest trach if we wanted her back. I said hell no! LOL Of course we had some great nurses too. We had another Jennifer that works nights. I used to hang out with her and talk for an hour every night. I miss her! We had a sweet girl named Jenna (my dog's name. LOL) She would play with the kids. They miss her alot! We had another one that would give her massages all the time. This is her enjoying one of those massages. She would play music all the time too which is very good for her. So that is it for the nurses for now. Hopefully we will have our two good ones for a while. No more nutty ones!

Thanksgiving 2008
She had a great Thanksgiving. We went to Grandma Donna's. She sat in her red chair with the big kids in the living room. She was so cute in her new plaid dress!

Halloween 2008
This was a scary night! Triniti was a little sick once again. She never really got over it from August. She is on meds again. She has gotten chest xrays and all that crap. Anyway, I went in there at like 2 am to check on her. She felt very hot. She was having tons of seizures and spitting up. I checked her temp. I was shocked to see it was 106!!!!!!!!!!!! I freaked out and called the pulmonologist. He is the one I call for everything. The answering service had a nurse call me back. I was irritated about that. Then a regular Dr. that had no idea who she was called. He didn't really know what to do. I didn't want to take her to the ER because they admit her whether she needs to be or not. I told him that. He said I just need to tell them she doesn't need to stay. He said it was up to me, not them. I ended up taking her in while Troy stayed with the kids. She was 102 by the time we got there. I took her with no coat. Of course they admitted her. I was too nervous to take her home. So she spent Halloween in the hospital with the same stuff she always has. Pneumonia, pseudomonis, staph.
I dressed her up and we went for a walk. The kids came in later to see her.

Wheelchair Clinic December 2008
Triniti is sitting her high chair right now watching me type. :-) (Today is March 14, 2009. Still catching up!) Triniti went to a wheelchair clinic on December 4. This is where they fit her for a wheelchair and decide what attachments it needs. I was really putting off the wheelchair. I didn't want her in one until we absolutley had to. This really meant she was disabled. After this clinic, I was very excited!! We got her in a wheelchair and she just lit up. She was in a perfect position. Her head was straight and she was comfortable. She started becoming very alert. It was awesome! I was telling the nurses and the Dr. how much she loves her big sister Brittany. She responds to her more than anyone...well maybe except Great Grandma Jones. She loves her! So anyway...a nurse was asking her about her big sister Brittany. Her eyes lit up and she smiled! She was very responsive. The rehab Dr. was totally shocked! She was so excited that she almost started jumping up and down. I have never seen a Dr. so excited! She said she didn't think augmentative communication would benefit her until she saw her respond in her chair. So we are going to that appointment March 19. They are going to put switches on her chair so when she moves she set a toy off. It will teach her cause and effect. The Rehab Dr. said she is beating the odds. I told her they didn't think she would make it when we first started all this. They said it didn't look good. She said she remembered seeing her in the PICU and it didn't look good at all. She said she can't believe the progress she has made. I was almost crying later when I was telling everyone the good news! So we are ordering her a wheelchair. It will be pink and black with her name stitched in pink on the back. :-) I can't wait!!!

I have the best nurse in the world!
We have the most wonderful nurse! Triniti is sick and has been for about 2 weeks. We got her on Cipro. We were going to go to the DR. today for a culture to see if she is on the right med. I can't get to Emanuel. My home nurse called today and offered to come get a sample from her and take it to Tuality hospital! That is above and beyond the call of duty! Isn't that great?!

The snow storm December 2008
I actually had all of this in my Myspace blog, so I just copied it. Yay!
We are having the worst snow storm I can remember. She has had a bad cough. I started out as lots of secretions in her trach. We know she is sick when she gets that. :-( Then it dried out and she started a horrible cough. Thursday she started coughing so hard that I had to bag her for 30 mins.! Brandon helped bag her so I could get her cough medicine. She was ok when that kicked in. So then all night she kept waking up coughing horribly and desating (oxygen level drops). We were up most of the night. I had to bag her once or twice. By the morning we knew we had a problem. We were going to take her to the er but thought we may get stuck in traffic or something would happen on the way. So we called 911 and they took her by ambulance. We spent like 4 hours in the er while they did nothing but give her albuterol. It helped alot but I thought they would be able to do more. They decided to admit her. Big surprise there. She had another bad night. I spent the night with her with Tristan. Not a good idea. He wasn't happy there and kept waking up. She kept desating and having trouble. I was up most of the night again. Why am I still up at this hour?! So the Dr. said she has staph, an ear infection and pseudomonis. It's not a bad staph, thank God! The bad news is that it could be whooping cough. I am so pissed off at her pediatrician! He said she can't have the vaccine for it (Dtap) because it can't make seizures worse. He says that is what the neurologists told him. Well it can, but for 48 hours while she has a fever. I thought he meant the seizures would be bad permanently. The Dr. said that was 10 years ago that that was true. So I am pissed! She can die from Whooping cough according to the infectious disease Dr. at the hospital. If she does have it they can treat it with an antibiotic. Tristan and I have to have too because I haven't been imunized yet (I was supposed to) and Tristan is fully immunized by 15 months. So that is great. The cough can last a month! She can't breathe when she coughs and needs to be bagged...basically CPR!!! So she on a ventilator at the hospital resting comfortably now. The vent seems to help the coughing. I had to come home because of the snow. I didn't want to get stuck there. We have to go back tomorrow. She can't be there without Mommy or Daddy! I need some sleep though! Troy is on Tristan duty tonight! We are probably going to bring her home by Christmas as long as she doesn't get worse. She has to wear her pretty dress for Christmas!!

She is doing better. She had a spell last night where they had to bag her. Other than that she is doing well. We are going to try to get the 4x4 Blazer out of the driveway to get to her today. That is the only vehicle our chains will fit on. For those of you that don't live here, we have gotten blasted with a major storm (we are near Portland, OR). We have 8" of snow. There is ice and they are predicting freezing rain. Chains are required. We came home from the hospital last night at 5:30 so we wouldn't get stuck. It was pretty bad. I hope we can get there today! What if they send her home today or tomorrow? How would we get her home? The Blazer is high and is a 2 door. It would be hard to get her in it. The Dr. was saying they won't keep her if we can do the same for her at home as they doing there. We have everything they have with the exception of Dr.'s nurses and RT's. We have oxygen, a ventilator, suction and meds. So we will see what happens. The view from her room.

Triniti is home!!!!

Yay! We brought her home last night. She is very happy to be home. She woke up in her crib this morning smiling. Her arms were up above her head and all stretched out while she slept. She was comfy! LOL She had some nasty virus. That is why she was in there. My poor baby! I am so glad she made it home before Christmas! She almost had to come home by ambulance. Chains are required here. We didn't have any for the van. We don't think we need them. That Odyssey will go anywhere! It's awesome! Troy found two pairs of chains at Joes. One fit my van. We were lucky! Trini is doing much better. She just needs a little oxygen and lots of suctioning. She will be over this crap soon I hope!

Christmas 2008
Triniti had a great Christmas. Christmas morning she must have known what was going on. She was all smiles! :-) She was sitting in her little red chair in front of the tree with the other kids. She got lots of fun presents. Tristan is happy. He gets to share everyt

Triniti

Shriners January 22
We went to Shriner's today. We saw PT, OT, a Nurse, a Med. Student, a Dr., got xrays and pictures taken. Phew! The Dr. was saying she is developing, just at a very slow rate. No one has ever told us that...not ever! I thought she was destined to be the way she was forever. She will develop slowly until she decides to stop. Yay!!!!!!!!!!! That is why she smiles, is seeing better, is holding her head up pretty well, moving more on her own, etc. The Dr. said she needs to get head control by age 4 or she never will. Then it is trunk strength and then walking. He didn't say walking was impossible for her. You never know! She just may do it. She has until the age of 6 to walk or she never will. We have some work ahead of us! He is an orthopedic Dr. so he couldn't tell me what is going on in her brain. That will have to wait until we see the new neurologist. He is going to regret taking us on. I am going to bug him until I get some answers! :-) There has to be more we can do to help her! She hasn't any MRI's or EEG's since she was in the PICU. I wonder if there has been any improvement. I think there has. We will see. So Shriners is going to help us get equipment that she needs and do PT with her. From what I understood, she isn't as bad off as we thought muscle wise and getting stuck in a certain position. The Dr. said we are doing all the right things. Good! I was so happy to hear that she is developing, even if it is super slow! From what her neurologist was saying in the beginning, she would never do anything and wasn't even aware we were in the room. That is totally not the case! :-)

January 25, 2009

So Triniti got really sick today. She was on her vent and desating really bad. She went down to 80% at one point on the vent and 3 liters of O2. That was scary! I was getting her ready to go to the ER. We had Grandma over to care for the other three. She had a fever of 106. This is the third time she has done this. Last time we took care of it on our own. She was fine after a luke warm bath. So we gave her a bath. After 15 min. in the tub her temp. went down to 104. By the time we got her out an hour later, she was 102 and her sats were better. So we decided not take her in. We know what would they would do at the hospital. They would give her tylenol and ibuprofen around the clock and keep her undressed. We can do that. So anyway...I thought I should call the pulmonologist since she is already on two antibiotics and spiked that fever. She has a horrible cold so maybe that is why. I called his answering service at 11 am. They had an advice nurse answering the phone. She said she would have a Dr. call back. At 1 pm I called back and said we hadn't gotten a call. The lady said, "The Mcqueston kid right?" (The Dr.'s name) That wasn't very professional. She said she would remind him. It is now 10:30 pm and we still haven't gotten a call. I gave up hours ago figuring it can wait until tomorrow since she is a lot better. The first time Trini spiked a 106 fever I called this Dr. and they had a nurse call me back who then paged a random Dr. I had never heard of. He wasn't even a pulm. He said to take her to the ER. We did. We saw Dr. Mcqueston later and told him. He was pissed! He was on call that night and no one bothered to page him. He said he would have had us stay home and treat her here. I am going to let him know they f-ed. up again. He is going to be pissed! I needed some advice today! Of course I would have called back if she hadn't gotten better. But they should have paged him! She is now in bed comfortably asleep with her sats at 97% off the vent and her temp. is 98.2. Yay! Troy and I are proud of ourselves! We don't need that stinkin' hospital!

First Haircut! February 28, 2009
Triniti got her very first haircut today. She is 23 months. Maybe I should have waited until 2, but I couldn't. I cut her bangs and trimmed her hair. She looks so cute!!!

Triniti got sick again. She was getting a lot fevers. It would start at 4 or 5 pm every day. It would be around 101 sometimes up to 102. I would treat it and it would come back the next day. This went on for about a week and then she started getting more and more secretions. So I called the Dr. and they had me come in to get a sputum sample and I was told to start her on Cipro. She needs stock in the company that makes it. She is always on it. We even have two bottles in the cupboard left over from when she was switched to something else. It usually doesn't work very well. After a week of the Cipro, she needed oxygen less and less. One night she fell asleep without the O2 and I thought we would just hook it up later. At about 2:30 am I think her heart rate monitor woke me up. That one scares me! That is the worst sound in the world. It means it is either below 95 BPM or above 185. She is either not breathing or has a horrible fever. I thought I was dreaming it so I ignored it for a minute. It went off again. I was too tired to get up. I was thinking all kinds of things that maybe she had been desating for so long the monitor just gave up and was just doing the heart rate monitor. I was about to get up and then Troy did. He said her heart rate was 95 and her sats were at 98%!!! She was sound asleep. I was so excited! I had tears in my eyes! I had to lower the low heart rate alarm to 85. The next day she did great too! This went on for days. One day she was asleep and her heart rate was 92 and her sats were 100%!!! She has had a bad day or two needing O2 for a few hours but other than that she has been doing great!!!!!!!!!!! I am so proud of her! She is more responsive too. I can tell she feels good. But I always have it in the back of my mind that she could get sick very easily and need O2 again. I get nervous every time she needs to be suctioned a lot. It has been a few weeks and she's great! :-)
She is getting her wheelchair on the 17th. I can't wait! Then on Thurs. she is going to Aug. comm. This should help a lot. I can't wait to bring her everywhere I go instead of leaving her on the couch or the floor. She needs to be with me. So I am finally caught up! This took weeks to do but I did it! Yay! So now I have to keep it current. Check back for more posts.

August 2008

2009-03-07T17:32:00.000-08:00

When Tristan was only a week old, on August 1, 2008 Triniti got very sick. We took her to her regular Dr. who said she had a little cold and sent her home. We went back a few days later. The Dr. said her lungs sounded great. We knew better. We pushed and pushed until he did a chest xray. She had pneumonia...again. So he put her on antibiotics and sent her home. After a few days she got worse. She eventually got too tired and just stopped breathing. I had to do CPR once again. Her O2 sats were down into the 50's. Not good! So Troy called 911 and we got her into the hospital. We thought it was just another routine emergency. We were wrong! This turned out to be a long horrible visit. They were trying to intubate her in the ER and knocked a tooth out! It wasn't just any tooth. It was her very first tooth! I was pretty upset. It took three times to intubate her. They had to call another Dr. to do it. Finally they got her intubated and on the ventilator. She went to the PICU and then to the regular floor. She was transferred back to the PICU one night when she wasn't doing so well. They had to reintubate her in an emergency. Troy was there then. I was home with the other kids. He said he thought we were going to lose her. How scary! She went down hill from there. She was having 102 fevers that they couldn't control very well. I was scared! I thought she was going to die! At one point I started to prepare myself to lose her. They kept telling me I should keep Tristan out of there. That was just impossible. I had to be there for Triniti! The nurses er. They told us she needed a trach to make it easier if she stops breathing again. I didn't want to do it to make it easier for them! That was a dumb reason! Why would we want to open her up to infection to make it easier for them?! After talking to them for a long about it, we decided to do it. I was tired of doing CPR and worrying if she was going to make it through the next spell. So on August 14 she got her trach back. I was convinced we were going to lose her. They could not get rid of the infections. I can't even explain in this blog the feelings we went through and how sick she was! It was horrible! I will never forget this month! The ethics comittee had someone come and talk to me yet again about letting her go. How could we do that? I told her trying not to be rude that I didn't even want to think about it. I don't understand why they keep talking to me about it. Do they not think she should be alive?! She deserves a life! I am getting tired of these a-holes!! After she healed from the surgery she was transferred to the floor. This was huge!She was still having lots of fevers though. I was still scared. She has shown in the past that just because she is out there it doesn't mean she is staying. She did stay though. We started going on walks every day with little brother.

Triniti went home on August 25, almost a month!
So Tristan spent his first month of life in the hospital. She came home with a ventilator that we would use only at night to give her a break. I was not happy about that, but she was home! That is all that mattered! She also had nursing care again. She got 8 hours a day. That is a whole other story that I will get into.
This is the day she went home. She slept until we got her inside. When she woke up, she smiled for hours!

Nurses
There were nutty ones and good ones. The first was Alexandra. She used to work for us at night when Trini had her first trach. So I thought she would work out great. Oh boy was I wrong! She sat on her ass all day and did as little as humanly possible! The first day she was with me we had a Dr. appointment. She thought she should butt in and tell the Dr. about her seizures when she worked for us last year. It was an endrcronologist. He had nothing to do with seizures and Triniti was totally different than before. I was a little irritated with her take charge attitude. I told her she could hold Tristan when she wanted to...meaning when Triniti was taken care of. She loved Tristan. She held him all day leaving Triniti for me to take care of. I let it go for a while since she was quitting in a while. She was starting school again. I figured I could deal with it for a while since she did help with Tristan. He was very needy. It helped when she held him all the time. But it was taking away from Triniti. One day I got out of the shower and Trini was in her high chair with her head flopped over on her shoulder. She does this sometimes. It will fall over and she can't pick it back up. Alex was too busy holding Tristan and watching tv to see that. I was pissed! She didn't say she was sorry! She missed feedings all the time too. She eventually didn't show up for a few days and got fired. I then told her boss all the crap she pulled. Her boss was mortified! So then we got Jennifer. She was great! We are now friends. She loved Triniti. She was very good at doing her exercises and whatever else needed to get done. She even helped with Tristan as much as she could. One weekend, she came over and babysat all four kids for free! We got her a box of chocolates of course. :-) Of course all good things have to come to an end. She lived in Washington so driving here was a bit far. She was waiting for her Washington license. When she got that, she got another job. :-( So then we got Keely. Nut job! She was a little intense...and stubborn. She wouldn't help with Tristan no matter what. I know it's not her job, but she could help out when she wasn't busy with Trini. She would argue with me and do other annoying things. Her first day, she sat in front of Triniti on the floor and stared at her for 30 minutes. She was so close to me I couldn't move. It was weird! I think I have blocked most of it out of my mind. I can't remember what else she did. She got fired when I told her boss I didn't want her back. I wasn't the only family to get rid of her. Another asked her to buy shoes for their house only or wear slippers. She flat out said no! She went to an appt. with another Mom who had another little baby. The patient needed a test and the mom needed to go. Keely refused to watch the other baby for a few minutes. The Mom had to reschedule! So then we got Eyvonne. She was very nice. She was always texting though. She fed Triniti the wrong amount of food. I don't even know where she got the amount! Then one day I went to say hi to Trini while she was having a bath. I noticed the water had a greenish brown tint. I asked her if she thought the water looked dirty, as she was pouring the water over her head. She said Trini had pooped on the way to the tub. I was appaled! I had to ask her to get clean water! What the hell?! Then she dumped a whole bottle of pediasure all over my couch. She didn't say she was sorry and I had to clean it up. It ruined my futon cover. I called her boss and complained about a few things. She was then "sick" for a few days. She ended up quitting at the last possible second.

First two years...1st birthday and beyond

2009-02-24T11:09:00.000-08:00

I added to the last post, just in case no one noticed that. So go back and read!

Triniti's First Birthday! April 1, 2008
Triniti had a great first birthday. We invited everyone. She had a crown that said, "1st Birthday Girl." She sat in her highchair like a princess. She had a cute Pooh bear cake. I put cake and ice cream in the blender and put it in her feeding tube. LOL I even put a little frosting in her mouth, which she hated! She got lots of good presents. It was a fun time.

Fundoplication April 24, 2008
She had a fundoplication today. They tied her stomach around her esophogus so she can't reflux or throw up. This is a good thing! This surgery saved her life! No more throwing up! Of course this didn't stop the choking on her spit. I still did CPR multiple times...everywhere. She has to be watched constantly! In fact on April 28 she choked and stopped breathing. She ended up in the ER once again. They gave her Robinul. It dries up her secretions. What a lifesaver that has turned out to be!!!!!!!!!!

May 1, 2007
Triniti stopped breathing once again. I took her to the ER. I had to do CPR in the Fred Meyer bathroom today. I can't remember if she went by ambulance or if I took her in myself. I do remember what happened when we got there. I was sitting in the ER room while they took her to radiology to do some kind of scope. I was pregnant with Tristan, so I couldn't go in. Suddenly I heard them call a rapid response (this is when every available person comes running) to radiology. My heart dropped into my stomach! Then they called a pediatric rapid response to the exact place where she was. It seemed like an hour before they came to get me. I called Troy in a panic who had gone to get food. He got there as soon as he could. He actually saw the ER Dr. in the parking lot who told him also. They finally came and got me and took me to her. She did one her famous desats and scared the technician. It really wasn't as big of a deal as I thought. They overreacted like they always did. I am so used to it that it doesn't phase me one bit. But the technician freaked when she went down to the 80's. They admitted her to the PICU once again. She went home 4 days later. We continued to have problems with her desating and doing CPR.
First Road Trip March 2008
We went to Mcall, Idaho to play in the snow. On the way there, she decided to stop breathing. We had to pull over on I-84 to help her. That was scary! Someone behind us pulled over to see if we needed help. That was nice! She was fine once we suctioned her and got her some oxygen. Brittany took this picture in the Blazer on the way. So cute! She went sledding and swimming.

First two years continued...

2009-02-23T17:48:00.001-08:00

May 27. She is back on the vent because she has a bacterial infection. We had a cranio-sacral therapist come to see her.
June 5.
She had a huge apnea spell. Her sats went down to 8! Scary! She was ok after some bagging. Then the nurse said the monitor wasn't picking up. We are learning how to change the trach and how to suction. She is having a muscle biopsy tomorrow. Another surgery. I'm scared!
June 6 Spinal Tap and Muscle Biopsy
She had her muscle biopsy today and then a spinal tap when she got back. Poor baby! Dr. Palmer came to see her. He mentioned hospice. He said she would die without the vent. I am holding on to what little hope I have. I am not giving up!
June 7 Trach change
I changed her trach today. It was scary! I met a nurse today that had a disabled son. We talked for a while. She made me feel a lot better. She said there were lots of programs to help with her. Her son died at 5 1/2. How sad! His disease was progressive. They have since figured out that Triniti's is not. Thank God!
June 14 Pneumonia
She has pneumonia with a micro collapse of her lower lobes, so they turned the pressure support up on her vent. Aunt Linda told me she has a friend with a trach that gets pneumonia all the time. I guess it is common with a trach. That made me feel better. I thought she was going to die!
June 27 Going to peds floor!
She is finally out the PICU! I carried her to her new room. It was so exciting! I couldn't believe we were out of the PICU! She has a window! Yay! While she was in this room, she got to go for walks. We went to the children's garden every day and sat in the grass in the sun. Below is a picture of her very first walk. We had to go with an RT (respiratory therapist). We didn't go outside. We were very happy to get out!

July 16, 2007 Home!!!!!!!!!!!!
My baby is finally going home! She went by ambulance. The whole neighborhood showed up to see what was going on. I was so excited to finally have my baby home! Even if it was on a vent! We had nurses 16 hours a day helping us. Some were great and some were just plain weird. We got rid of one that wouldn't do anything my way. It was by the book or nothing at all. We fired her so quick! We had a great night nurse named Jennifer. Day nurses were Rosemary and Charolyn. We had some other nurses that weren't so great. I was greatful for the nice ones! We had another night nurse that was very strange. I swear she was drunk. But she never smelled like it and she was good with Triniti...as far as I know.

First Outing
Her first outing was to Grandma Rhonda's house. We were very excited! Of course while we were there, she desated and scared everyone.

The Pooh Bear Story
This is a great story! We had taken all the kids out for dinner. We then went to Fred Meyer. It was one of her first real trips out. We were in line at the customer service desk. This jock looking guy was in front of me. He turned around to look at Triniti. She gets a lot of looks these days. I was going to get mad and then he asked about her. I like it when people ask instead of just staring. I told her what was wrong. He said he knows she will get better. How sweet. Then he turned back around and said, "Do me and my wife a favor." I thought what could I possibly do for them? He handed me $20 and said, "Go buy her a teddy bear." I said I couldn't take his money, but he insisted. So I bought her this Pooh Bear at Babies R Us a few days later. She seems to know how she got it. It is a special bear. I will never forget that guy. How sweet! The girl at the desk was talking to us too. To this day, I talk to her every time I go to Fred Meyer.

We started taking Triniti to the park. She loved being outside! We would lay her on a blankie in the grass with her vent. She really perked up outside! I even put her in the baby swing. She eventually got weened off the vent. I had them take the damn thing away when we hadn't used it in a month. That was huge!
Coming Home Party August 2007
I spent weeks planning a party for Triniti coming home. It had to be a huge celebration. We invited everyone she knew. Most of them came! It was so much fun! This is the picture I used for the very fancy framed invitations I sent. If I had a picture of someone with Triniti, I used that one instead for personalized invites.

Her first Halloween
She was a flower. What a beautiful flower she was! She went trick or treating with Brittany and Brandon. We gave her a Hershey bar. She held it the whole time. It was melted by the time we got back. LOL

I love this picture! She was getting a massage from her nurse and she looks truly happy!

Trach Removal November 26, 2007
The Dr. didn't feel she needed her trach anymore, so Triniti got her trach out! No more vent and no more trach! Yay! I am so excited! I was scared too. She was having another surgery. She made it through just fine.

Horrible Day!! December 15, 2007
Triniti actually died this day on her bedroom floor. She choked on her spit and turned blue. This was a normal thing for her. This time it was really bad. I couldn't get her pink again. I was sticking suction catheters up her nose and down her throat trying desperatly to get the stuff out to no avail. I started CPR on her bedroom floor. Her heart had stopped! I had Brittany call 911. At first she refused. She was scared to talk on the phone. I had to tell her that her sister would die if she didn't do it. She finally did. The paramedics got here in no time. They took over CPR. I didn't want to stop even for a second to let them take over. I remember standing outside her bedroom asking if she was ok. They wouldnt' tell me anything. They finally rushed her to the ambulance and we went racing to St. Vincent's with the lights and sirens blaring. This jack ass on the highway wouldn't get out of the way. It was horibble! The driver was yelling on the PA and he still wouldn't pull over. Finally he did. It took forever to get there. She was ok by the time we got there. I found out a while later from a neighbor that they didn't get her heart started until she was in the ambulance! So we were back in the PICU. I hated that place! The Dr. came in and said that the blood work showed a very high white count which meant Leukemia. My heart dropped! How much more could my girl go through?! They re-did it and it was a false reading. Thank God! She only stayed a few days this time. After that incident we had many more...not as bad. I have done CPR in the Fred Meyer bathroom, at our house, at Grandma's. One time Brandon, Trini and I were in the car on the highway and she started vomitting (a normal thing at this point). I pulled over and did CPR in a panic. She was ok.
First visit to Church
We surprised Grandma and Grandpa at church. I didn't bring the suction machine because she had been ok. Big mistake! We went to Grandma's house after church. Aunt Megan was there too. Triniti threw up and turned blue. I ran to the sink so she could throw up there. All I had was a bulb syringe. It wasn't working! Aunt Megan called 911. She was ok by the time they got there. They told us to take her to the Er. Grandma and I went to get her checked out. They let her go home after suggesting she stay. I refused. She didn't need to stay there.
More Surgery February 11, 2008
She went in to get her trach closed because it wouldn't close on it's own. She also got a different feeding button put in. Sometime after this surgery, she went in for a reflux test. She has severe reflux! Poor girl! That is why she is choking on spit and vomitting all the time.

The first two years...condensed.

2009-02-23T15:37:00.000-08:00

Since I am just starting this blog I have to tell her whole story up to this date. So this may take several posts to get current since she has had a long complicated two years. These posts are from a journal I kept while she was in the NICU and PICU.
The birth-April 1, 2007 It was 4:30 am on March 30, 2007, the morning of my baby shower. They had the shower without me. LOL My water broke and we knew it was time. She was almost 5 weeks early. My due date was May 4, 2007. We went to the hospital in a rush. I found out later there was no reason to rush. I wasn't dilating, so they gave me potocin to speed up the process. I was having horrible pain so they gave me all kinds of drugs. I finally had her almost 24 hours later at 3:59 am on April 1, 2007. Her apgars were 6 and then 9. She was a little floppy and not breathing well. She was fine with some stimulation. Troy and I were exhausted! We fell asleep after everyone left. We woke up to the strangest noise. It was a baby crying! I was so confused! I finally figured out it was Triniti. LOLI tried to nurse her, but she didn’t really get it. She made a huge mess. She kind of drank a bottle. She spit most of it out. She was a sleepy girl.
Nicu Stay April 1-April 24, 2007
At 1 pm, they came in to tell us that she had jaundice and had to go to the NICU. I was pretty upset. Later that day they told us she had low calcium and her face was square. I thought they were related. It turned out they were two different things. She wouldn’t finish a bottle. She wasn’t sucking very well at all. She couldn’t get the suck, swallow, breathe thing down. So they put a tube in her nose.As time went on they told us that they thought she had some problems. They said her forehead stuck out too far, her face was square, she had no chin, her ears were too low and she a neurological problem because she held her fists tight. We thought they were nuts. She was a beautiful little girl! She was our girl! That was all that mattered. Her jaundice was pretty bad. It was 9.7. She had to be under blue lights 24/7.
We couldn’t hold her very much because she had to be under the lights. We could hold her for 30 minutes at a time. That was torture! Her level would go down and then the next day it would be up again. It seemed to take forever to get it down. We were worried about brain damage from it getting too high. Thank God it never got to that point.I went home without my baby on April 3. I hated going home without her! She was moved out of the serious NICU to the other NICU. That is a good sign.She had a heart murmur. So she had to have an echo to see if it was ok. There was a tiny hole in her heart. Scary! The cardiologist checked her out and said she was ok and to see him in 6 months. Phew! April 6 she got off the intense lights and is dressed for the first time! She wore a pink gown. Very cute! She smiled and laughed at me today! April 7 her bili level shot up to 14! She projectile vomited on Brittany. I thought it was funny and laughed at her. So Trini then got me who was sitting next to her. Yuck!
April 8 was Easter.
We dressed her in a little bunny outfit. Adorable! She was not a happy girl. LOL The nurses just loved it. They paraded her around the NICU.
April 10 her bili was down to 7.2. Yay! No more lights! April 11 she had lots of tests. She had a barium enema, and xray and upper GI. Poor girl! They were all normal. They found a cyst on her spine. The specialist didn’t think anything needed to be done. I spent three days in the hospital with severe mastistis. I had to be wheeled to the NICU to see Trini. She got an MRI done and a swallow study which was normal. She continued to have problems with eating. She would eat about 10 mls. at a time and would fall asleep. I pushed and pushed for them to do something. They couldn’t do anything. Then one day a nurse suggested trying cup feeding. We tried a little medicine cup. She drank it in 5 minutes! I was so excited! She took a little longer sometimes and other times drank it right down.
She had to have a carseat challenge to go home. She failed both times. Her sats went down below 90%.
I thought that would keep her there. We can’t take her home without a car seat. She ended up getting a car bed. She layed down in the car. It was cute! The Dr. decided to send her home after 3 ½ weeks. He said he has never sent a baby home on cup feedings. I asked for an apnea monitor. The Dr. didn't think she really needed it but gave us one anyway.
Finally Home! April 24, 2007
Our little Angel finally came home. It was a happy home coming! Barney the dog was quite excited. I will never forget that. He was wagging his tail and grinning. I spent the next 3 days feeding her with a cup.
By day two she was taking an hour at each feeding. I was getting no sleep and was exhausted! I didn’t know what to do. She was on an apnea monitor for about a day. It only went off briefly once so I took it off and left it off. Bad idea!

April 27, 2007
Triniti had a fussy night the night before. She was crying all night for no reason. Both Grandma’s were here and so was my neighbor. My neighbor was holding her. She was saying what a good baby she was. She said she was sleeping so peacefully. It was time to feed her but she was so happy being held, I didn’t take her right away. I finally asked for her. When she handed her to me, I noticed she was a little blue. I stimulated her while Grandma Donna freaked out a little. I wasn’t panicking yet. I put her on my lap and her head flopped over. I yelled for my Mom to call 911. I raced into the kitchen and did CPR on the counter for about 3 or 4 minutes. It seemed like hours. I was one of those people you hear on 911 calls saying hurry please! Of course they are going to hurry! While my Mom was still on the phone, Triniti farted and started gasping for air. That was a good sign! The paramedics got there in 8 minutes and took over. She was ok by the time they got there. We took her by ambulance to St. Vincents. They did all kinds of things to her. She was so mad!! She cried and screamed. They had to transfer her to the Children’s hospital. She went in an incubator and then my ambulance. She cried the whole way. That is the last time I ever heard her cry. To this day I wonder why that is. It breaks my heart. What happened between the ambulance and the PICU? What happened?!
We were met by Grandma Patti Jo when the ambulance pulled up. We got to the PICU at 7 or 8 PM. They had us wait in a little room while they got her settled. They intubated her and put her on a ventilator. Now that I look back, I think that was a bit much. They did a spinal tap to rule out meningitis. It was negative. She also got a transfusion because she was very anemic. I was so scared sitting in that little room just waiting for word on what was going on. I didn’t know if she was going to live or die. Every once in a while someone would come in and tell us something. It seemed like an eternity before we got to see her. I was shocked when we finally got to go in. She had a tube down her throat and was hooked up to a big machine helping her breathe. She had wires everywhere monitoring her heart rate and breathing.
They had sedated her so she was sound asleep. I remember sitting in the recliner exhausted and Patti Jo brought me a blanky. That was so nice. Dr. Lindsay was the Dr. that night. He was saying he thought maybe it was RSV. They had to do some tests to try to figure out what was wrong. We finally went home at 12:30 am. I thought this was the worst day of my life. Little did I know the worst was yet to come!
May 1 she had her first EEG. Dr. Pohowalla said it didn’t look good. He was very vague. She has started myoclonic jerks. A few days later her regular neurologist, Dr. Mettrick explained the MRI. She said she had unorganized brain waves. She could be mentally retarded later. That was hard to hear. I asked if lack of oxygen could have done it. She said it could have. I felt horrible thinking if I had just gotten to her sooner…

May 2 she went for her MRI. I was so scared! I was afraid of brain damage from lack of oxygen. It was basically normal. It showed a little decrease in grey matter, which could be normal for her age. I was so relieved!
On May 5 they suggested a new diagnosis. NKH (Non ketotic hyperglycinemia). I looked it up. How horrible! It causes low muscle tone, poor feeding, hiccups, lethargy, and apnea. It is more serious in girls than boys. 30% of babies die In the first month. It usually causes severe mental retardation by 6 months. What if she dies? Now I am scared! I have talked to a couple Moms on the internet about it. One had her daughter die when she went into a coma after not breathing. Another they gave her daughter 6 months to live. How sad! She lived though. She is about 8 and looks severly disabled. This is when I met Kimberly. She has two boys with it. One has it mildley and the other has it severe. She has turned out to be a great friend! I can always talk to her when I am having a bad day. She has been there too. It turned out to be negative. Thank God! But still no diagnosis.
On May 7 she got extibated. After about an hour her CO2 got too high and they had to put her on a CPAP machine. Her sats went down to 42%. Scary! She came back on her own though. Her CO2 didn’t stay down so they had to intubate her again on the next day. She is now not making eye contact which is strange.
May 9 Another EEG
She had another EEG today. We won't know anything until tomorrow. The nurse told me it is possible she could come home with a trach. I am open to the idea. I will have to see what Troy thinks.
May 10 First Care conference
I will come to hate these conferences! Her EEG is still very abnormal. The neurologist thinks it is progressive, meaning it will get worse. How horrible! They are saying it could be Cerebral Palsy. It does not cause retardation, so I kind of hope it is. That is better than other things it could be. They are going to insert a feeding tube in her tomorrow so they can get the tube out of her nose. They are saying she might come home on a ventilator. How would we deal with that? She has an infection in her central line and is getting fevers. She is getting a transfusion because she is very anemic. She got a pic line her arm to get rid of the central line. We went to build a bear and got her a cute teddy. The kids each put a heart in it with a kiss. Brandon named the bear Sara.
May 12, 2007
I got to hold her for 2 1/2 hours. Yay! She made eye contact for 30 seconds! Troy said she looked at him and then back at me. How exciting! She weighs 6 lbs. 8 oz. She is getting yet another transfusion.
May 13, 2007 Mother's Day
Troy proposed this morning! :-) It's about time! LOL Everyone came to the hospital to spend Mother's day together. We took up the lounge and Mom brought KFC. Everyone went in a few at a time to see Trini. It was nice. Mom got me a cake that said, "Mom my hero, Love Triniti" It made me feel great!

Triniti had a huge seizure while I was holding her. I panicked and didn't even know how to get help. She was jerking all over. It was horrible! They calmed her down and sedated her. Poor girl!

May 14
Brittany's birthday. What a birthday. :-( Triniti had a video EEG so the Dr. could see what is going on when she has spikes on the eeg. Still no NKH results! This is so nerve racking!
May 15 Stupid Chaplain!
The chaplain (who is no longer aloud to be near Triniti after this another incident) came in and talked to me today. He is on the ethics commitee. He said Triniti is not going to recover and will probably die. We need to decide if we want her rescucitated. I was devistated!!! I called Troy balling and told him to get there asap. He came and we both talked to the Dr. I was very mad because they didn't tell us any of this. The Chaplain had blindsided me. The Dr. said he didn't think she was going to die and had no idea where the chaplain got that idea. I felt much better. The Dr. talked to us about a trach again. He said we would get nursing care at home. I don't want some strange nurse in my house! I thought about it and thought it may be for the best. He said eventually she could get the trach out. The NKH test was negative. Yay!
May 16 Hand and Foot Molds
We got hand and foot molds done. Brandon got to help. They are so cute! Trini is getting her trach on Monday. They said she would be in the PICU for 3-5 days for recovery and then to the regular floor. I hope so!
May 17 Care Conference. Worse day of my entire life!
The memories of this day haunt my dreams. It was the worst day of my entire life! I wanted to die! The Dr. talked to us before the conference and told us a little bit of what was going to be talked about. He said it wasn't really anything we didn't know. We were blindsided! My parents and Rhonda were there. The neurologist said she is basically in a coma with asleep and awake periods. They said she probably doesn't have much brain function at all. Today, almost two years later I remember the Dr.'s exact words even though I didn't write it in my journal. He said, "We have two options and neither one is good." My heart sank! After talking to the pulmonologist the Dr. doesn't think the trach will work at all. They think she is too little. He said if they did do it she would have to stay in the hospital on a vent until she got bigger. The other option would be to take her off life support. He said she would most likely stop breathing and die. When he said this we all burst into tears and I didn't hear anything after that point. The damn Dr.s just sat there in silence looking at us. They could have left! I will never forget this day as long as I live! I really wanted to die! I remember the drive home. I could barely see because I had tears in my eyes. I shouldn't have driven. I remember talking to Troy on the phone. I even remember where I was when I said it. I was heading into the tunnel on hway 26 when I told him it may be better to let he go. He got mad and asked if he needed to get custody and take her.
May 18
I thought about her all night. How could we just let her die? They don't even know what is wrong with her. So, how can they say she won't improve? She is breathing over the vent, which is good.
May 21 Trach Surgery. Appointment with Dr. Palmer
I am so scared! They said anesthesia is more risky with her condition. If God wants her he will take her. I wish he would make the decision for us. That would make this so much easier. While sitting in the surgery waiting room I remember feeling numb. I didn't really care what happened. I was just heartbroken and drained. We had a 2 hour meeting with Dr. Palmer. He said if she was his daughter, he would give her a chance. He said they don't know what is going to happen and she needs every chance she can get. He made me feel a whole lot better!