February 7, 2024

We were very frustrated yesterday and drilled the team with questions today during rounds. They believe David is in a position where he could have gone home today, and we disagreed for a variety of reasons. Mostly, it seems like he will be going home in a worse position than when he arrived and we still have no future course of action. His weight was back down to what it was on Monday today (a loss of 20 grams), which doesn’t make much sense since he’s still not really eating orally and his volumes have been increased. I’d prefer that he would show some weight gain before leaving. His minimum goal is 150 grams per week and so far we are at 80 grams gained from when we were admitted last Thursday. His other goal is to gain 20-30 grams per day, so it seems highly unlikely he will hit his weekly goal tomorrow even though he’ll have had that tube for a week. So, we came in with David eating most of each bottle orally but not always finishing them, and ever since his cath last Friday David will only take a bottle if he’s asleep. Additionally, we haven’t seen the weight gain that I would expect using the tube just about exclusively (especially with an updated volume). 

Yesterday afternoon one of the residents stopped by with what came of the Tuesday conference. Basically, they decided to discuss David more fully at the Friday conference. We had really hoped to have a timeline and idea of what his future interventions would be. We did call his main cardiologist today to seek her opinion and we also found out more about those conferences. Tuesday conferences seem to be a high level conference on all the different cardiology patients. Of course, David is a bit more complex and not quite so clear cut. His cardiologist has asked for a further in-depth discussion on David at the Friday conference where they could give him the time and discussion that he needs. Apparently Friday conferences are where they really dive in deep on more complex cases. 

During our phone call with his cardiologist, we also learned that once she got the news of his left upper pulmonary vein stenosis on Friday, she immediately started calling several other folks she knows to seek their opinions and today when we called, she was pulling up some research papers. David, as are all heart patients, is one of a kind and it’s a struggle to figure out how his body might respond to each thing it needs fixing, and how fixing one part now may affect the timing of other things he needs later. It sounds like they are trying to balance lots of moving pieces – they don’t want to have to delay future treatment, but there are some things that cannot be postponed either. Basically, David’s case is very complex and she wants to give it the time, thought, and energy that it deserves so that they come up with the best solution for David.  

We have continued to work with speech every day. David has shown them now that he’s a little rascal and won’t take the bottle for them anymore. He still seems to take it very well overnight. From our point of view, he seems to be having some bottle aversion if he’s awake, but if he’s asleep and doesn’t realize what he’s doing, then he eats well. So, he will come home with a feeding tube. We have been instructed to try to feed him for 5 minutes, and if he won’t calm down to eat, then into the tube it goes. We’ll get training on his pump tomorrow when the home medical supply company stops by. Hopefully we’ll feel more comfortable coming home with that, but I would feel much more comfortable if I knew how long that would be. After his next surgery, he will have a longer recovery and will likely be needing to relearn how to eat anyway, so we just want him to have some good experiences until then. 

David has also started to see OT again while inpatient. Speech thought he could benefit from some of their massages for gas management. We got a few more tricks from them (and apparently, I remembered the ILU massage backwards), so it’s been good. I guess we’ll see where David’s weight is on Thursday and take it from there. I want him set up to succeed before going home. Otherwise, from a clinical perspective things look good – he sounds good, his saturation levels are good, and his blood pressure is mostly good (depends on how upset he becomes during the process). He also needs his anti-coagulation blood test before we go home. That was supposed to happen today, but after sending out a page to vascular from 3 different sources, they never showed up within David’s window. Hopefully that can occur today because this is the end of the two weeks since his last draw and I’m not sure what happens if he misses that window.