Jaxson finally got discharged Thursday around 9pm. Since it was so late & still a 45 minute drive home, we decided to stay one more night at the Ronald McDonald house. So we officially came home yesterday- a day shy of 3 weeks! I could tell Jaxson was so excited to be out of the hospital & even more excited to be home! The look on his face when he woke up to me Friday morning was priceless! He opened his eyes, sat up still half asleep and reached for a hug.
Once we were home and settled back in, I gave him a haircut because he and I were both tired of it being too long and going in his eyes. 🙂
The rest of the day consisted of nothing but relaxation. His respite nurse stopped by to do resumption of care to restart services & also dropped off information for make a wish. Based off the info given, he will qualify but I’m waiting until he is old enough to make the wish himself & actually enjoy it! So that’s pretty exciting and something for him to look forward to. The rest of the day we watched movies, and tried to play with some toys. Friday night, i did our nightly routine of turning on his star machine (illuminates stars on his ceiling), turning on music and “tuck tuck tucking” him into bed, but I could tell he was still anxious. I turned on his closet light thinking maybe it was too dark for him and when that didn’t work I finally jumped into bed with him and let him cuddle me til he fell asleep. Halfway through, I thought it might have been a bad idea because I would for sure make noise getting out- but he stayed sound asleep!
He is still NG tube free for now since he isn’t allowed anything by mouth. It’s actually working out pretty well- before, he would drink water & pedialyte and get mad if he couldn’t have it. But now he seems to have forgotten about it. He’s also up 3 pounds and stooling less which is so good! He literally stayed at 20 pounds for what seemed like forever. We would adjust his feeds but his weight always fluctuated. Im happy to see that he’s been consistently gaining for the last week. But with good comes bad. Not having anything by mouth and being on TPN 24 hours a day 7 days a week & lipids 5 days a week affects his liver & bilirubin levels. I’m not sure if his GI Doctor plans on restarting feeds, or if she is just going to wait until after the transplant. We will know when we follow up with her in a week.
Today and the rest of the week will (hopefully) be pretty uneventful medically. We will have follow up appointments & he will have labs drawn sometime this week. He starts preschool again next Monday and I will be sure to write about his first day back!
I want to thank everyone for taking the time to read our blog, and thank you, thank you, THANK YOU for all of the positive thoughts that were sent our way! Please continue to share his blog as often as you’d like!