May 28, 2024

Today was a restful, but also quite a busy day for Mr. David. He was laughing up a storm this morning, but neither Adam or I can remember what was so funny, before he fell asleep again. After he woke up, his nurse was going to do all the things she had postponed while he was sleeping when OT & PT came into the room. The floor mat was set up and he was getting ready to start when echo showed up, so they had to allow echo to go first. After echo finished, vascular arrived to do his weekly PICC dressing change. When they finally finished, OT & PT came right back in, and by this point, David was exhausted and sleeping very soundly. They asked whether they should wake him or just let him sleep, and today I decided he needed his rest, so they will try again tomorrow. I don’t think I had ever seen his room have a line of people waiting to come in before, and neither had his nurse – she said she felt like she was David’s personal scheduler today.

I was in meetings through all of this, but apparently Fern (and her mom) were in the room during these procedures providing comfort to David. Once my meetings finished up, I realized Fern was laying down so I went over to pet her. A short time later, David finished his PICC dressing change, and Fern got up and played tug with me for a moment – that was great fun! We love that Fern knows that she can also be a dog and have playtime when she sees us now. We saw a little girl who used to race through the halls when David was first born had come back for a visit, so we let Fern go off to visit her old friend (at least I think it’s the same girl – our stay was much shorter then and we didn’t meet many other families). 

When David finally awoke from this nap in the afternoon, it was finally time for all the vital checks that were unable to be performed earlier – like checking his weight, measuring his noggin, getting a soap and water bath, and changing his outfit and bed linens. During this time, we pulled off David’s helmet. He gets an hour break from it daily, but lately it has started to leave some marks that do not go away after an hour. The orthotics guy comes back on Wednesdays to make adjustments, but after consulting OT, it was determined to not put that helmet back on his head until after the adjustment tomorrow. OT says the last thing David needs is to be getting an infection from the helmet, and his skin is already breaking down due to the helmet. They could put in some padding, but it will not help due to the current breakdown. I think David is going to like this extended break. 

After his bath, he got to sit up in his chair where he enjoyed the view and watching different things. He was giving smiles and just being a happy baby. His nurse was so excited to see him so comfortable and happy, because every time she has had him in the past, he’s usually going to or coming back from some sort of imaging, and not super happy. I had just started to read him some stories when speech showed up to do some messy play, and regular play. David moved into his high chair, and today he got a small taste of bananas. It turns out he’s just like his big sister Anna at that age – he does not like bananas. That was one food I never imagined a baby not liking, and now I’ve had 2 of them who do not like them (although, Anna did change her mind around age 2 and will eat them now). So after David did not like the bananas, they just did some playtime in the high chair with toys. 

When speech finished, she left him in his chair, and I played with him a little bit and read a story or two, but David was exhausted. I could tell he wanted to go back to bed, and rather than letting him fall asleep in the chair, we moved him back into bed and he quickly fell asleep. He continued to sleep until after I took the other kids home, and apparently was full of laughter with Adam this evening with a new game they started playing. 

As for medical updates, I don’t know why since David still very clearly has a lot of fluids, but they backed off of one of his IV diuretics today – switching it from every 6 hours to every 8 hours. The other was left alone at every 6 hours. This kind of surprised me as I thought maybe they would discuss adding in a one-time dose of metolazone. Perhaps they did not think he was as much fluid up as I did – especially since he hadn’t been weighed yet. At this point he is a full kilo heavier than his “dry weight”. 

David is also starting a new blood pressure medication today. It’s one he was on before when he weaned from the milrinone, so we know he tolerates it well. However, once he was started back on the milrinone, it was stopped since milrinone also lowers blood pressure (among other things). After weight-adjusting his meds, David’s blood pressures are still on the higher end, so he needs a little something more. This medication takes a couple days to take effect, so we’ll hopefully see some results in the coming days. 

Also, there was some discussion on David’s nutrition. Over the weekend, they chose not to fortify his feeds, and apparently they left that as a big question mark when handing him off today. The nutritionist would love to add those calories into his life, but I think everyone else is nervous that adding that back will bring about the return of bloody stools that have remained at bay so far. The dietician pointed out that he has had bloody stools without having fortification before, and also when he was NPO. Instead the team inquired about if his nutrition needs are being met since he’s actually taking in a much larger volume of feeds compared to other kids with his same heart physiology and size, and she said he’s at the minimum level. Although, since he’s receiving more feeds, that means he needs more diuretics – it’s such a balancing act. There was a bit of a compromise, and instead of fortifying his feeds, they will start him on MCT oil. This will allow him to wean off his lipids and it’s something that is given orally – so it’s much easier to go home with vs lipids which are administered via IV. The oil is given every 4 hours for now, so we’ll see how David tolerates it. 

As for the transplant decision – I think they still are waiting on a piece or two of information, but otherwise the current plan is to discuss David at their big meeting on Thursday afternoon. I’m hoping at that point, we’ll have some clarity about what to expect for David’s future.