December 9, 2023

David’s been home for a week now, and oh what a week it has been. I was really hoping for a more relaxed atmosphere at home versus the hospital room, but what I have witnessed so far is being home is anything but that. I thought I might post weekly updates after his weekly cardiology visits (or if anything big came up). As it turns out, at least this first week, there have been so many appointments and phone calls and trying to figure out a schedule and running on little sleep, we’ll see when I’ll actually get around to posting updates. David must be stressed too as his hair is falling out! 😆 He looks just like Anna at this age – an old man with no hair up front or on top. It will be interesting to see if his hair grows back like hers as well – blonde and curly. I also found that I usually cannot take many physical notes at these appointments (just mental notes), since I’m usually holding David and bouncing him around to keep him from crying, so I’m mostly relying on my brain-fog memory at this point.

The first thing we did that has been incredibly helpful was make a daily hour-by-hour calendar with all of David’s various medications and other tasks he needs. It has been incredibly helpful to see what is due at any particular time instead of us looking up when something was last given and then the frequency to determine when it’s due next. With the amount of meds he’s on, it was quite a juggling act until we did that. After a week, I’m starting to remember which meds are due at which time, but it is a great reminder and something I double check every time. 

Monday was pretty much a day of phone calls. One referral after another was calling to schedule follow up appointments. There are two (speech and pharmacy) I still have to call back to set up, but honestly, I needed a little room to breathe and figure out a new normal home schedule. 

Tuesday, a home nurse came out to check on David. They initially called as I was packing up the room on Saturday and I let that go to voicemail and thought I would call back after we were a little more settled. Then they called back bright and early on Monday and wanted to come out that same day! I was not ready for that, so we agreed upon Tuesday afternoon. Honestly, we were confused as to what the nurse’s purpose was since we report to our team David’s weight once daily and his oxygen and heart rate twice daily. The nurse asked if we knew why she was there and we conveyed we hoped she’d be able to tell us. She was also somewhat confused since David doesn’t have a feeding tube nor does he need the monthly RSV booster. I checked with the cardiology team later in the week and the home nurse will need to come by weekly to check his vitals. They just want another set of eyes on him by someone outside of their group to make sure they are all seeing the same things. He’s still high risk, and our cardiologist said an even higher risk than other kids with his diagnosis since he’s only had a hybrid procedure. Before covid when there were a few more nurses, they had the home visits occur twice a week, so I’m happy it’s just one time because our home is crazy enough with the other kids and their toys laying around and our dogs. 

Wednesday David met his pediatrician. They combined his one month well-child check with his after hospitalization followup. She knew about David from Anna’s well-child check and learned more when Eli was sick, so she was happy she got to meet him. For the most part she’ll let the cardiology team run the show, but she’s there for when we need her. 

Thursday, we were back down in the cities for his weekly followup cardiology appointments. We started the day with lab. His blood work looked good, so there are no changes to his blood thinner medication. After that he had an echo. This went really well, he basically slept through it. It took some energy to stay awake myself – it was a dark room with a shusher going making it a really relaxing atmosphere. After that, we met with his cardiology team to discuss echo results, go over questions, make adjustments, and talk about next steps. We’ll do this weekly. His echo this week looked really good. His pressure differences in his upper heart chambers was down from last week. They think the elevated numbers must have been because he was upset during the echo and they had trouble getting a good read on it (that’s what happens when echo shows up at the same time as his bottle and the boy is hungry).

When we were discharged last week, I saw the cath doctor and he mentioned that David would need another cath procedure to balloon his atrial septum stent since that could be a reason for the higher pressure difference. He said he didn’t think that the stent had narrowed yet though because David had hardly grown since birth, but the other reasons which I have since forgot were ruled out as well. Since the pressure difference needed to be dealt with though and that stent would eventually need to be ballooned, he told me he had penciled David in for a cath next week but it could change depending on what his weekly echos showed. Luckily, since this echo showed the lower pressure, David is now scheduled for that cath in mid-January. David should be bigger and better able to handle it as well. Doctor did go over the risks at the time of discharge as well, but said it was less risky than the first procedure he did on David since that one was all about survival and now it’s more about maintaining until he’s ready for the next step. 

Friday, we met with a pulmonologist. She thought David looks great, and said his CT scan looked really good as well, in fact I think she said it looked relatively normal. She also reassured me that David doesn’t seem to have issues associated with nutmeg lung on his imaging, and she pointed out that the highest risk for mortality with nutmeg lung is within the first 30 days of birth. Due to his heart condition, they would like to see him fairly frequently, which is every couple of months. They also want to monitor him closely whenever he has a procedure. She’s hopeful that his lungs developed mostly normally and he won’t have hypertension in his lungs as he grows, but they will watch that closely and have a clinic that deals directly with that issue. Our hope is that he never needs that clinic. I believe she said hypertension can develop when too much blood flows to the lungs over a period of time, but David’s PA bands should help with that, thus lowering his risk. 

The pulmonologist is also going to check some literature to see how frequently David should get images of his lungs taken and also the type of scans they should be, whether that be CT scans, MRIs, or something else. She’s also not sure whether they will do a biopsy or not at some point. It would be coordinated with cardiology for a time he is already sedated for a procedure, but it will have to be weighed whether that risk is even worth it for the knowledge gained or not. Before she left, she did make a point of saying she will watch David’s lungs over the course of the next several years, and she wanted to call that out and breathe it into existence. She emphasized years over weeks and months since she wanted to reassure me that she thought David has a good future ahead of him.

Before we left pulmonology though, she checked David over, and noticed it looked like he was having a little trouble breathing. However, he’d calm and it would go away and then come back. She asked me to watch it and if it persisted, call cardiology. I did let our team know but by the end of the day, his breathing seemed less labored. However, he was spitting up a lot. I’m not sure if it was because we decided to increase his feeds after his cardiology visit, or something else. If it persists, he is going to need to be seen by cardiology I think (we’ll have to call the on-call doctor and see what they think). I’m very nervous David’s short time home is coming to an end, so here’s hoping today he’s looking better than yesterday.