May 14, 2024

A busy, but less exciting day for David today (thank goodness)! It was actually a really good day for him. He had two field trips off the unit and when he was awake, he was happy and wiggly and just seemed like himself. David kept his nurse busy today, but it was a good busy. Now for a quick recap.

When I arrived this morning, David was awake and was giving so many smiles. I freed his arms a little bit from his weighted hands and he was happy to move them all around – although he could not leave his face alone. He quickly showed that he could not be trusted to have his hands free. Yesterday, he had his NJ tube replaced (twice because the first replacement was kinked and did not flush), and we had it placed on his weaker left side so hopefully it would be safer from his hands. That was a mistake. Around 9 this morning, David took advantage of having his hands free while his tumbleform chair was being raised in his bed and out that tube came. 

So, David had his first field trip this morning down to radiology to have that NJ tube replaced by radiology. He had an appointment there this morning at 9 in case a nurse was unable to get it in yesterday. However, it was canceled since they got one in yesterday. Initially they said they could get him in at 3 to replace it, but then called a short time later with a cancelation so David went down this morning to get that placed. This was field trip number one. After he came back, they put a bridle on it so that he can not pull it out again. David learned that later this afternoon when he tried pulling on it and started to turn colors because it really hurt but he would not let go of it. 

This afternoon David had his second field trip down, this time to IR (intervential radiology). His PICC line has had a lot of trouble lately with blood draws and he’s needed clot busters at least 5 times in the past week, so he went down there to get it re-wired. David came back with a working PICC line again, which is excellent because he needs a lot of blood work done over the next few days to start the transplant evaluation process. So this evening his nurse spent a lot of time organizing which labs are most important to start with and balancing that with how much blood is safe to be taken at a time. David should have some blood in the blood bank saved for him in case he needs a transfusion with all the blood that will be used for these labs. It was saved from his last transfusion so it’s blood he’s already been exposed to and has antibodies from, so at least it’s not a new source. 

David got some very nice cuddles in with Fern and her mom after his bridle was placed. They read some stories, and then provided him support while speech came in and worked with him. Neurology also came in to see him during those cuddles as well. Everyone was happy to see how well he was doing. Then OT and music therapy came in, and David went back into bed for that therapy. He got a break from the floor mat due to all of his excitement the last two days. 

Early this afternoon, we also had our care conference. Due to the impromptu meeting yesterday, there was not as much to go over. The subdural hemorrhage really changed things up. No one is quite sure yet what caused it or what signs we missed, but everyone is very encouraged with him today. David now has super close eyes on him so hopefully he can’t be so sneaky again. Neurology went over some of the long-term brain results since yesterday we were so focused on this new bleed we didn’t get there. It seems likely David will have cerebral palsy but it’s unsure to what extent at this point. Also, the sicker he is and the less he’s able to start doing this, will inhibit his development down the road. We’ll just keep working with David and see what he does, and hopefully he’s full of more positive surprises. At this point, she does not see anything that would cause her to think a transplant is not in his best interest! 

The plan today initially included a quick brain MRI. However, when the neuro-surgery surgeon stopped by, she said that was fine but she didn’t feel as if he needed one today but if other teams thought he needed it then go ahead. All the other teams thought they were compromising with neuro-surgery by getting one today and then maybe later this week. However, since neuro-surgery did not feel he needed one today, it got canceled. I’m not sure if anyone came up with a schedule for his next MRI at this point. Neuro-surgery sounded like next Monday would be fine, neurology says this Friday or Monday may be fine – they just don’t want to wait too long. After that, it’s unsure what the frequency should be. Should it be weekly? Monthly? Weekly for a while before going longer between? It sounds like neuro-surgery will mostly drive that. Neuro-surgery would like to not have to do surgery if possible, because many times the surgery in this case ends up doing a lot of stuff to only end up back where we started. 

David was also started on some valium today. He started off happy today, but it’s unsure if his continued happiness throughout the day was because he’s feeling better or perhaps his new medication. This evening he’s back to getting a small volume of feeds again too. 

Tomorrow we have a big meeting to learn more about the transplant process.