June 10, 2024

It is my turn to write a post. So there will probably be some mistakes, grammatical errors and things forgotten, but hopefully it will be ok 😀 . 

Overnight last night David slept ok except for a 2 hour stent between 12-2am where he woke up and did quite a bit of coughing and gaging before settling back down. After that they stopped his Amino acids but then restarted them in the morning.  He got his X-ray early this morning and the results said that he had “stable to slightly increased perihilar atelectasis/edema” or in normal English, his lungs have the same or slightly more gunk in them than his last x-ray two weeks ago. During rounds they decided to post pone any plans of going upstairs for the immediate future while his respiratory situation seems to not be in as good of a spot as we would like and there isn’t any clear cut reason as to why or improvement with the tactics used so far. The only change is that they are going to go with daily doses of metolazone to hopefully see more fluid coming off. With daily checks of his electrolytes to make sure he isn’t losing those too much. At one point during today he was on 70% O2 on 5L but eventually weaned to 40% O2 and 5L. The fluid he is holding on to is still the prevailing theory as to why his lungs are having the struggles and the increase in the other diuretics haven’t yielded the results they have hoped so far. Also one of the transplant doctors would really like to see the fluid off of him.  

Later David got to sit in his wagon again and got to do some speech therapy from the wagon! First he played with some food in a bag and then tried some butternut squash. It had quite the powerful smell and David wasn’t so sure about it. We will have to see how it goes is next time trying it. He didn’t like bananas the first time either but didn’t seem to mind it the second time. After speech a volunteer came by and roll him back and forth for a while so we could keep working with both hands instead of having one on a wagon. He said it gave him a good arm work out for the day! This volunteer is always amazing with how he checks in on David every day he is here and also has something interesting to talk about with us too. David looked like he might fall asleep any moment in the wagon but never did. He eventually went back into bed and fell asleep with some pats and bed rocking. 

After I left David got some OT working on his arms and from what I hear it didn’t go great and so she said that tomorrow she is going to try to make David first or catch him right after a nap so that he is fully awake and ready to go! Also while I was gone I heard that David had a new RT and he was wondering if David had a permit for all of the toys he has in his room, and that his tractor must have delivered them all haha. He also informed David that if he wants a hedgehog as a pet he will have to go to South Dakota to get one since they are an exotic pet and they cant be acquired here but he can have one. He knew this since he has had 2! I am not sure how good of an idea a pet with needles on it’s back is with a house of dogs and toddlers myself but I guess if the urge strikes us we know what to do now.

I brought the kids to the hospital after daycare and we had dinner in the room. It was a little challenging as David was watching Bluey and so Eli had a hard time focusing on his food at first. Shortly after they arrived they realized that their new stuffies, Bear and Pig with their tubes, were in the van so they had to run down to bring them up. They spent most of the rest of the time caring for them, giving them shots, Band-Aids, medicine in their tubes, and of course music therapy. David started showing signs of being tired but didn’t really want to sleep with his siblings around so Jessica took them home and he took a nap shortly after they left.  He did wake up just in time for is nightly chapter of Harry Potter on the hospital TV channel. Then after hanging out for a bit with me he went back to sleep.

I am contently amazed at how everyone who has take care of David checks in on him even if they are not responsible for him that day. It is rare that a day goes by that he isn’t visited by multiple members of his fan club just to see how he is doing. We are really lucky to be at this hospital with such amazing nurses, doctors, therapists(OT, PT, RT, Speech, etc.), volunteers, family life specialists, and I am sure more. I feel really blessed with all of them and also all of the support of our friends and family. 

Hopefully there aren’t too many errors or typos in all of that 🙂