Quick Update

 Just a quick update, mostly to say that no news is good news. We're wrapping up Day +4 today and so far, Aaron is doing pretty well!

His feeding tube was placed on Friday (Day +1) which was a rough day. He was feeling pretty good that morning before the tube was placed, but the procedure itself was fairly uncomfortable. Before the procedure, he was given some anti-anxiety meds to help but they seemed to also knock him for a loop. He doesn't remember most of the afternoon or evening that day, but it was intense for the rest of us. Thankfully, it was out of his system by the next morning and he began to adjust to the feeding tube.

He had been told that the feeding tube (it's an NG tube specifically) would take a few days to feel "normal" - sort of like wearing a watch. You're super aware of it at first, but it begins to feel more common place after a little while. That was definitely true in his experience. The first day, right after it was placed, it was really uncomfortable and hard for him to imagine how he'd be able to tolerate it for the next month. But by today, it feels like no big deal and he's figuring out how to eat solid food comfortably with the tube in place. The purpose of the tube is to take the pressure off of eating while he doesn't feel very well because he can receive his nutrition by feeding tube and IV nutrition, but he's still able to eat when he feels able, but mostly as a bonus. He took that to heart and enjoys eating mainly dessert options at all three mealtimes. 

Rocking his feeding tube

Aaron would say he has up days and down days, which seem to alternate. On the good days, he has plenty of energy and eats well. On the down days, he feels more pain and feels really tired. Today was a good day! We try to take a few walks around the unit per day (gotta earn those BMT Bucks!) and today he even felt up to pushing the IV pole himself for our walks. Trust me, it's not as easy as it looks. He's loaded down with pumps, cords, and bags - but handling it all like a champ.

Rocking some sweet PJs and his IV pole

His counts are continuing to drop steadily, which we're told is good news at this point. From the doctors' perspective, it's all going according to plan so far. We are so very grateful for that! 

At home, life keeps marching on. Jacob is bounced right back into life at home after the transplant and seemingly has had no side effects from his role as donor. He went back to school today and is ready to finish up the last few weeks of second grade. We had Libby's first dance recital on Sunday and then Sam has a whirlwind of baseball games and band concerts this week. It's good to know that the kids are happy and staying busy in the midst of it all.

Thank you for continuing to pray! Your responses to our Transplant day posts here and on social media were so sweet and thoughtful. I thought that a blog would be a good way to keep everyone updated along the way but it has also turned into such a source of encouragement as you all continue to reach out with kind thoughts and prayers at every step along the way. Thank you for walking alongside us!

Please continue to pray for a successful transplant! While we won't know for sure if the transplant was successful for a little while longer, we're carefully watching his blood counts over the next few weeks. The doctors expect to see them to continue to trend down for a few more days, during which Aaron will probably feel the sickest, and then hopefully, they will start to climb back up in the not-too-distant future. Most of the same prayer requests from the last post still apply - it's just a waiting game at this point! One day at a time...