We made it through our first week at home with minimal excitement and activity and we couldn't be happier about it. Our week was measured by two things: A needs evaluation and his weekly clinical transplant visit
Hudson was evaluated to see if he required any special services (Occupational, Physical or Speech Therapy). Developmentally, Hudson is right on track and where he needs to be. He is very alert, aware and engaged. We will take that win!
Since Hudson is being fed via a feeding tube (NG tube) instead of by mouth, it is important that he maintains oral stimulation. This basically means they don't want him to forget how to eat because post transplant the NG tube will be removed. We accomplish this training by trying to feed him a couple mL's by bottle each day (if he will take it) and by using a pacifier (aka 'binky' as painful as it is for us to call it that). Hudson will suck for a moment from the bottle but overall he is not fan of the formula so we rely on the binky as the primary source of stimulation. This has created a hate/love relationship between Morgan and I and that stupid binky because although it is helping him, we have this overwhelming urge to strap or glue that thing to Hudson's face. We're good parents, I swear.
Doctors would like to see most children be able to hold up their own heads and have a general "core strength" by 4 months. This time frame is most likely not realistic for Hudson since he must be on his back or side all the time to prevent throwing up. Keeping every ounce of nutrition in him is more important than working on his strength right now. Once he is able (post transplant) he will work with the OT or PT as necessary to catch up on his physical milestones - which they said would take no time. In the meantime, he nailing his motor skills and loves grabbing and holding on to stuff - including his NG tube. The OT will continue to work with us on a weekly basis to make sure he continues to excel at the things we are able to given some of restrictions. #nailedit
We are currently working on the vowel or 'front mouth' sounds with Hudson so you will frequently hear "what sounds do owls make? Whooooooooooo" around the Hill household accompanied by repeat readings of "Your Baby's First Word Will Be DaDa" by Morgan. Morgan is going to be so disappointed when those aren't Hudson's first words. Anyway, The speech therapist was happy with where Hudson was and excited to hear that this was our routine. No need for speech therapy.
weekly transplant clinical visits: week one.
This was our first time seeing the transplant team since our discharge from the hospital. At the weekly appointments, they check his blood labs, do a physical exam, weigh him and measure his body fat. They do this to understand how much of his weight is water retention from his liver decline versus body fat and muscle.
His blood work this week was better than it was in the hospital. That means his infection/illness is continuing to improve and give his body a much needed break from working overtime.
When Hudson was discharged from the hospital he weighed 4.51kgs. This week, he weighed 4.70kgs (I have learned to appreciate the metric system so I need to apologize to my middle school and high school teachers when this whole thing is over and done with)
Although one would normally be happy that his weight is increasing, it turns out that his body fat percentage pretty much stayed the same. That means that any increase is most likely fluid retention.
The positive thing is it did not go down! In these situations, maintaining is almost as good as gaining. Almost. So, the plan is to continue with the same routine this week and see how Hudson's measurements look next week. Fingers crossed that he gets nice and chunky.
Overall, Hudson's labs and bilirubin levels are on cruise control at the moment so our main focus is to fatten this kid up and make sure he is continuing to grow. He has some mild itching from the increased bile in his system but overall, he is comfortable. We understand that pre-transplant, Hudson will eventually hit a plateau and stop growing but we all agree that we are not quite to that point yet. We will continue to pump Hudson with calories he can tolerate and think nice plump thoughts for him.
quick note from us:
Words cannot convey Morgan and I's appreciation to everyone who has signed up and sent us food via Meal Train over the past week. It has been incredible and allowed us to devote 100% of our time and energy to Hudson. There isn't a day that goes by that we don't mention and recognize how lucky we are to have the support system we do. Thank you. Thank you. Thank you.