Breathing Treatments

Ian is getting breathing treatments every four hours round the clock to help get more air flowing. He is a doing a great job (probably b/c I let him watch an extra cartoon while he sits still to do it). He can even squeeze the med into the nebulizer himself and get it all strapped on. Go fighter pilot Ian. We should only need to do this for another day or two and then only as needed.

ER

Last night was a long night as we were at the ER. Yesterday Ian had been unable to keep anything down and that is one of the "flagged" symptoms that hte transplant team has told us to call them about. We called the team and were advised to take Ian to the ER based on his symptoms.

Brett went with Ian while I stayed with Livy. They had a battery of tests including a chest x-ray, blood work, flu swab, etc. Everything for his liver numbers in the labs came back normal which was a huge relief. That at least meant that we were not likely battling a rejection episode. Chest xray negative for pneumonia and flu swab negative as well meaning that what he has has been ruled a respiratory infection. Treatment is to use the neubulizer round the clock to help open his air ways so he isn't struggling to breathe.

Today has been much better for Ian in terms of less coughing, less labored breathing, and energy. Hopefully after a good night of rest he will be even better tomorrow. The doctor has OKed him to go back to preschool when he feels up to it so we'll see when that is.

We are so relieved that it isn't his liver directly although he likely contracted this as his immune system is weakened from the transplant and it will take a while for him to be fully back to himself for the same reason. I think Brett and I ran through a million scenarios of what it could be, etc. I have already raised an eyebrow at the suspicious timing of starting preschool and coming down ill--could be very very random but still. It just means I need to step up my guard even more.

Thank you to all who prayed for us. It helped immensely specifically that Brett and I could funciton on so little sleep.

Side Effect

Ian is doing great with the occupational (OT) and speech therapy (ST). He likes to go and "play" with the different things with Miss Molli and Miss Cora which is great that the thinks of it as play. I am working with him at home as a big part of the OT is at home and almost all of the ST is at home. We have been using scissors and gluing things and we learned today that we should try gluing some different things like beans or noodles so we'll do that tomorrow. For our ST we use his Big Backyard Magazine from national geographic to talk about all the cool animals and animal facts. I'm learning lots myself like why earthworms come out when it rains.




One of the side effects of Ian's meds is hair growth--speedy speedy hair growth. He has always had lots of hair and now it grows even faster if that is possible so yesterday I busted out our usual routine for cutting his hair. It consists of:

• Taking off shirt to avoid the scratchy factor
• Putting on cape
• Putting in requested favorite DVD (yesterday it was James and the Red Balloon {a thomas the train})
• Loading up with lots of sugary bribe treats (yesterday it was mike and ikes)
• Wetting down the hair (crying follows)
• Snipping begins

I try really hard to go fast and make it look decent and think I do an OK job but that is just me. Here's the picture of Ian in the cape yesterday :)


He is doing great all things considered and appreciate the love, prayers, and support.

Therapy Begins

We had Ian's evaluations for speech and occupational therapy on Wednesday. He is a bit behind due to transplant issues. We'll have to go for about 3 months every week and it is going to take some schedule wrangling as Ian's little sister really shouldn't be there so Brett is trying to be here to watch her.

Ian continues to do well and amaze me with how much energy he has. And I don't think that he could eat more string cheese...we go through 2 to 3 a day!

Future Doctor

With all of Ian's trips to doctors, etc. I think we may have a future doctor in the works. He gives a pretty good check up if I do so say myself. That one of his "toys" of choice; complete with waiting on the couch to be called back to the exam area. He's giving a checkup to "baby elizabeth" who had a "good strong heartbeat" and "no fever". Her weight was "thirty fourteen".

On a different note, Ian's transplant coordinator is leaving CHOA as she is getting married and we are sad to say goodbye to Miss Jill. She has been great to work with. We don't know who is taking her role yet. But thank you miss jill for all you have done for us! We will miss you. The picture below is of Ian with Miss Jill at CHOA during the transplant.

Actigall is going, going, gone....

We said goodbye to the last dose of Actigall last night and of course had to do a photo op for that one. Ian has been on this med since he was 3 months old so it is kind of like an old friend to us.

Ian is doing so well all things considered. We are needing to get some occupational therapy for his motor skills and that should start soon. His energy is ever growing as is his appetite. He turned four a couple of weeks ago and are thrilled at how awesome he is doing.

Six Months Ago 6/17/09

It is six months to the day and date that Ian received his gift of life liver transplant. Hard to believe in many ways that we are at our half way mark to our year anniversary. All day yesterday and today I have been thinking about what we were doing six months ago and how very different our timeline is now.

Ian is down to three meds in the morning and two at night. That is going to be our routine for a long long time now. We are hoping to get him on pill/tablets at some point but for now we are fine with the compounds. The pharmacy we are using is fantastic and we love them! We are still facing some of the side effects from the medications but are managing. So far, the meds haven't produced anything physically to tackle such as large gum growth or cushnoid cheeks.

Ian still has labs drawn every other week and today at labs, he didn't shed even one tear. He is really such a champ! When he gives me a pretend check up, he does labs and even gets the details of srubbing my arm clean before he "gives me just a little poke".

I continue to put special T ointment on his surgery site every night. He reminds me if I forget somehow. He is also very well indoctrinated about Germ-X at this point which I am grateful for.

He has so much more energy now and his appetite is amazing. He finishes dinner often before we can which is a total turn of events from pre-transplant life where dinner would take 2+ hours to finish for him trying to get enough meat/protein into his diet.

We are so grateful for the team at CHOA, for the donor family, for those who helped us fundraise, and our family, friends and our communities that have loved us, prayed for us and supported us.