December 14, 2023

It took about a week but I think we finally have fallen into a routine and a schedule that works for us. We’re starting to anticipate which drugs are due next, and remember the times for each – it just makes it hard to find much time during the day to rest since I don’t want to miss a dose. We’ve also had to set some alarms around the other kids’ bedtimes since those can distract from a medication for David. 

The last few days David has been more fussy than usual – especially while taking his bottles. He seems hungry and then has a bunch of spit up and won’t accept the full feed and starts screaming and fighting the bottle. The home nurse was out here yesterday and she thinks David has a bunch of gas making him uncomfortable, so we’ve started giving him gas drops with every bottle to see how that helps. Since we’ve started that, he’s finished all his bottles. I have found some comfort in having the nurse visits now as I’m hyper-sensitive about every little thing regarding David, so it’s nice to have someone either put my mind at ease or validate if something is off. We also have his care team wh is just a call away too, but it’s just nice to have a set of eyes without having to bring him anywhere. 

David continues to gain weight every day. Today we had our weekly cardiology visit. First we went to lab, but they were unable to get blood out, so he went for his echo while they waited for vascular to come up to do the blood draw. He was pretty calm in his echo and I believe the lady who did his echo when he was born preformed it again today. She couldn’t believe that he is already 6 weeks old! He had a few moments of agitation or being startled, but she paused and I held his hands and he quickly calmed and slept through the rest. 

After his echo, we went back to lab where a different phlebotomist was going to try to do his blood draw. We were pressed for time due to needing to get the draw done in a certain window for his anticoagulation test and there was still no word from vascular. It was the same phlebotomist who did his draw successfully last week, so I was hopeful. She was mostly able to get it done; however, she was having trouble getting all the vials filled, so David ended up with a heel stick as well to finish off the labs he needed. 

After lab, we went back to our room where we waited for our cardiology team to come in and discuss the week, echo results, and make a plan for the next week. Well, our echo results this week were not as cheerful as last week. The first question that was asked was if he was agitated during echo since he was currently agitated and making a fuss after getting his vitals checked. That answer was no, he mostly slept through it with a couple startled moments but quickly returned to calm. Well, last week those pressure gradients in his upper chambers of his heart were at a 5 which is good, but today they were back at a 9. This will need to be closely monitored. Had it been a 9 last week, David would have undergone a cath procedure tomorrow; yet with those good results last week it was decided to postpone it until mid-January. We’ll be back next week for another echo, so we’ll check the pressures again, but that cath procedure may end up being pushed up. It’s a delicate timing thing with the holidays approaching and I’m guessing there are considerable amount of staff taking some time off. This was something that was mentioned last week when discussing when they may move his echo. 

Another thing that was brought up from the echo is there is some flow that they are unable to determine where it is coming from. Last week the cardiologist thought it may have been coming from a leaky aortic valve, which is not ideal but it’s not terrible either. This is because as David undergoes further surgeries, that valve will not be needed as they make his heart into a single ventricle heart. However, this week she thought it looked like it may be more of an issue with the tricuspid valve. She’s hoping that an esophageal echo during his cath procedure, whenever that will be, will be able to take better pictures and shed more light on where that flow is coming form. If it really is the tricuspid valve though, she said that will make his next surgery riskier and more difficult, and it would likely change which options are on the table for the next steps. We’ll have to be patient for now, but we were really hoping for a more stable echo with not many changes from last week. 

Otherwise, I think we’re going to keep everything the same with David. His oxygen saturations haven’t dropped much so there’s not need to adjust meds for that, and his blood pressure still looked good. We will adjust his dosage for his blood thinner though as those numbers came back slightly below an acceptable value and we’ll see how they look again next week. For now, we’re just hoping David’s discomfort subsides with the gas drops and we’ll try other tricks they brought up in clinic today. We’re also hoping his heart remains stable through the next few weeks.