First Week Home

Short version: Job has been home four days now and transplant-wise is doing great! Attitude-wise it's been pretty rough: he's grumpy because of steroids.

Long version: We had our first outpatient transplant (TX) clinic today and his cardiologist was very very pleased. His Tacro (main immunosuppressant) level was really low, so we're going up on his dose, and Job was vascularly dry so we're taking away one of his diuretics and adding more fluids.

We're also working to increase his calories and get some real food blends into him. Thursday is his swallow study so it's possible he'll get to start eating some foods by mouth after that assessment, but in the meantime we'll start giving fruit and vegetable purees by tube 6x a day. It's a lot of work to get his feeds ready and to make sure we're on time with them. Much more work than I remembered from two years ago when we were on tube feeds, actually.

It's hard to avoid eating or drinking in front of him - we have to be very calculated about who will go eat where and when and who will entertain Job while everyone else is eating. But it's hardest to avoid talking about food and drink in front of him! Wow - food is a common topic!! And we're all a bit dehydrated because we can't carry out water bottles around and drink from them all day.

Every day Job gets stronger and more active and can stay awake longer. He's actually sleeping pretty well at night - better than we were expecting!! We're starting up PT and SLP therapies next week.

His meds aren't very difficult. It's actually an easier schedule than we were on pre-transplant. Two of his meds are very time sensitive and have very precise blood draw times, so that is a bit of extra work, but it's not so bad. I almost have all his meds memorized by name and dose and bottle size/color and med color, which happened more quickly than I was hoping and makes life much easier. I could have drawn up his old meds with my eyes closed and was apprehensive about how much extra time it would take to learn his new meds, but for naught!

'Roid rage is the hardest part of post-TX life right now. Job gets so very angry so many times throughout the day. He's most grumpy with me but will play for moments of time with his brothers or dad or grandma and grandpa. He's really sad to not eat by mouth and keeps asking for food/drink politely... and then angrily. And he's deconditioned from surgery and all that bed rest, so he's irritated about that. But he just bursts into rages all of the sudden. Sometimes as (over)reactions to some provocation but sometimes completely randomly. We'll be off steroids on November 3pth and that day couldn't come soon enough.

He likes walks in the stroller outside and baths always but is rather fickle about other activities and people that he did like pre-TX.

It is completely understandable that he's this emotional. I can't even imagine how scary and sad and frustrating and confusing and uncomfortable his life is right now (and I am usually the one forcing him to do xyz)! But it's definitely hard to figure out how to encourage him and entertain him and take care of him right now.