Thomas the Train Day 5

Ian and I are watching Thomas the Train Holiday celebration for the second time this morning. The doctors came by for rounds and told Ian he had a new engine inside of him and Ian thought it was a new Thomas engine. Took some explaining to get that straight.

Ian had his central line tape changed today and that was not so swell. Even with the tape removal stuff it was still very unpleasant. I had to wear a little mask over my face when they did that. He also had some tape changed on an IV on his hand and that was actually better.

We've played Critter in the Candy again--a game I brought from home that I've had since my childhood. Ian loves it; especially when I find the Critter.

Ian's labs are still trending down. It may take over a month for him to not be yellow but we can see improvement even now. The doctors said that it usually takes for the bilirubin to get to 1 for them to notice the color change. The surgeon told me not to follow just one or two numbers or I'll go nuts.

Ian is now on a calorie count. If he can eat well enough on his own, he'll stop getting nutrition by IV. He had a pancake and a french toast stick this AM with a carton of chocolate milk. He can also get his NG tube out if he can take all of his meds orally. He hates that tube so we're using it as motivation that if he can do all meds by syringe then it can come out. We'll work on taking at least one med orally a day as he is on so many right now.

Many blessings have come our way and we are so thankful!

Chocolate Milk on Day 4

Ian got chocolate milk today--he is cleared to eat anything he wants! Chicken nuggets were also requested but he didn't eat any once they arrived. Now that Ian can eat in his PICU room, Brett can as well which is huge in terms of brett eating.

I washed his special blanket today--it had gotten some blood on it earlier--and will be bringing it back to him tonight. I hope to trim his fingernails tonight too as they are ultra scratchy and snipping nails is a "mamma thing".

I opened up his special Thomas the Train holiday DVD to watch today and I must say it was nice to see some new episodes myself! We also went to the thomasandfriends.com website where he helped Harold the Helicopter catch the balloons (his favorite activity choice).

Ian's labs continue to be positive so that is good. He had labs drawn again recently and we are awaiting results. He started prograf yesterday and the doctors are watching for dosage information, etc.

We are so thankful for all those who have been praying for Ian--thank you, thank you, thank you!

Day 3 in PICU

Ian is resting now and he needs it after kind of a rough night last night. He tends to waken a lot and not really remember or know where he is. Of course all the beeping equipment, etc. and frequent nurse visits don't help much either.

The doctors round in the morning and afternoon and nurses shift change AM and PM as well. Ian's nurse right now's name is Thomas and with a Thomas the Train fan--that works.

The liver enzyme labs are still trying to come into normal range--about 20% of liver transplants respond this way and right now it looks like Ian is in this category. He will get his next lab draw around 4pm.

I brought some Christmas decorations for Ian's room--just a few small things. I also brought pictures of Ian and our family for him too and his nurses to "see" Ian as he is in normal life and not with all these tubes and lines, etc.

Please continue to pray for all of us. We all need it.

I have a new liver!!!

Ian got his special call for a new liver on December 16,2008. It is his "Liver Day". We are so grateful for the donor family, for doctors and nurses and medical staff and all who have prayed and helped us in any way.

Ian started surgery on December 17, 2008 at 11am and came out doing well at 8pm. Doctors are pleased with how things went and are progressing. His labs are showing good signs of improvement and he has them drawn about every 4 to 6 hours at this point. His is able to have sips of water. He is wearing "hospital pants" aka a diaper which we are pretty sure he is not going to like being in a diaper again.

One of the big hurdles for Ian to cross is to be able to come off medicine that is helping his blood to vessels to be nice and wide and big for blood flow. That will be key. He is already off his breathing tube which is a biggie in terms of being able to move him and him to move.

Brett is being the primary care giver right now as Livia needs to be close to me for feeding purposes and she is not allowed in the PICU room. We are shifting in and out so that the other can eat, etc. One of us will be with him at all times and he didn't even like it when brett closed the door to the bathroom that was in his tiny room.

Ian's TV is operating quite up to speed which isn't too big a deal right now as Ian is sleeping a lot but will be major when he is more with it and wants to see Thomas the Train--particularly the "gordon with the jelly" epsiode currently in the DVD player. (I thankfully kept his travel bag packed with Thomas DVDs and books to just grab when we got this call--phew!) We have told the nurses that Thomas the Train is the big thing for Ian so to use it to motivate him, etc. I was playing our made up guessing game of "I'm thinking of an engine" where I give clues to him about an engine that he has to guess this morning and Ian was aware enough to play. His nurse on duty today knows Thomas really well to play with him too so that was wonderful! I brought a few of his engines with us but am bring the rest the engines when I go back tomorrow.

I'm posting to my own blog and Brett is posting to his as well so check those sites for more info.

Thank you to all--nurses, doctors, donor family, family and friends, anyone who has helped in any way!!!! God bless each of you.

Clinic visit

We went to liver clinic last week and a parent support meeting. Ian is doing better now (PELD is an 8 but he is still listedas a 14) although his abodmen is getting bigger--to be expected. He loved the trees and other Christmas things at the center but of course the butterflies were still the best to him. We didn't get to see Dr. Romero this time so Ian was sad. We did find out that we are near the record for longest pediatric wait time at CHOA. Not really a record we were aiming for......we've been waiting for 3 years now which is truly amazing as most kids wait just 6 months. Ian is just really stable and we know it is Heavenly Father helping him and us. We've started to talk to Ian about his transplant and what to expect. We got 2 books from the center to help us with that.....and Ian is looking forward to his airplane ride or daddy driving superfast.

Insurance woes

So I am calling the insurance company again about Ian's meds being covered or rather not being covered. I'm getting experienced at the menu prompts and think I can do it in my sleep. Oh for the red tape!

Ian is doing well otherwise. He will have labs in about a week so I'll have more to update then. He got his flu shot recently as did the rest of the family less his little sister.

We've had some comments about his skin tone recently that make my claws want to come out but I am trying to be civil about it. We worry about him being teased in school if he still hasn't had his transplant by that point. What is a parent to do?

We are especially mindful and express gratitude at this Thanksgiving Season to everyone who helped in anyway with Ian's fundraising campaign. It is a huge relief to us to know those funds are there to help our little boy. Thank you, all!

Waiting to swallow a pill.....

Ian had labs just after I came home from the hospital with our little girl, Livia Janene. He did a great job keeping the trend and went to get some french toast with Dad afterwards as a special treat. He loves French Toast and just to let everyone know...Waffle House does not have French Toast on their menu. Shocking we know and learned it the hard way.

Ian's lab values have fluctuated a bit, which is normal. His PELD is up just a bit but not too much. He'll need labs again at the beginning of November. He continues to be stable for which we are so grateful for.

We have a specialist visit in November at MUSC and then head to the CHOA transplant center for a clinic visit in December getting so see the beloved Dr. Romero.

While I've been somewhat out of commission healing from my c-section, Brett has taken on the medication dosing, etc. and has done a great job. He even reordered meds that were running low. I've been the one to do almost all the dosing, ordering, mixing, etc. and it was interesting trying to teach my mom how to use hte syringes, etc. as our backup medication person. I never realized that syringe technique is an art almost. I've just started on the medication tasks again for Ian and it has been nice to have a break. Oh for the days when Ian can swallow a pill!