Christmas Eve Day 7

Ian got on the floor (with a blanket) today to play with a cool train set--not Thomas but still very cool. The track could probably go all the way around his bed but we set it up as to not be in the way as much as possible in the small PICU room. He got on his tummy to play with the engines even--I have a picture of this that I will post when I can download them. I am amazed at how well he is recovering. The physical therapist was with us and she said the best thing that we can do for Ian to "rebuild" is to just play really. He is up and walking to the bathroom now and he is in big boy undies. Clothes are still a bit of a problem just because of the wires and tubes but we are going to try special Christmas jammies tonight.

Ian knows tonight is Santa--still asks about the chimney. I've told him that Santa is so smart that he doesn't always need a chimney. We have his stocking, etc. We are going to leave his Santa presents at the nurses station until he is sleeping to bring them in.

He did OK today with meds by mouth--still a bit of a struggle. We've mixed a few in chocolate milk and yogurt to help them go down so Mary Poppins was right about a spoon full of sugar :) He doesn't seem too keen on the grape flavoring suprisingly and does better with chocolate milk dilution so we're sticking to that.

We'll be decorating a tiny tree I got at Target (which was a mad house today) and reading the Christmas story before I have to leave the PICU tonight. There is magic in the air even here in PICU.

Is it Christmas yet?

Ian is doing very well so far. His bilirubin level keeps falling and he looks less yellow all the time. It could be a month for him to completely normalize.

I've ordered him lunch today and his favorites have returned to the top of the list so today he is having yogurt, string cheese, bread, chocolate milk, cheetos, and a rice crispie treat. He had 45g of protein yesterday and 1200 calories which is great. I have to write everything down that he eats--part of making sure his NG tube can come out.

Ian struggled a bit iwth the steroid this AM by mouth but we're going to try grape flavoring this afternoon to see if that helps.

He hasn't complained about pain really at all which is huge. The nurses comment that he is a tough and brave boy and we know it. They also say that he is super smart. I am sneaking in some "preschool" type things with him each day--looking for letters and numbers on things etc. We play I spy in his room and are starting to run out of things to see.

We're going to try to get him into undies and clothes of some sort today too.

Ian has asked if it is Christmas yet and if Santa will come down the chimney? So sweet and innocent. He doesn't know he already received the best gift ever just a bit early--a new liver! So yes Ian, it is Christmas.

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.