January 26, 2024

Yesterday was another reminder of how quickly time is flying by. How are we already approaching 7-8 weeks since David’s last cath procedure, so he’s due for another one soon? It had completely fallen off my radar as something he had coming up, but when it was mentioned in clinic, my thoughts went back to December 26th when he had his last one. This next cath is likely to do the same thing – balloon those stents to ensure the passageways are nice and open so blood can flow freely. They may try to balloon his pulmonary artery bands (it was just mentioned as something someone might want to try), but it’s unclear whether that would do anything since those bands are fixed in size. They may also make this cath his pre-glenn cath; or at least treat it as such. This may not be his last cath before that surgery though, so whether it is truly his pre-glenn cath or not remains to be seen. 

We were in clinic yesterday for David’s weekly echo, visit with the team, and lab. He started off with his echo. It went well for the first half, but then after about 15 minutes of laying nicely, David decided he was done and and wanted to let everyone know that. His technician had asked prior to beginning if there was anything that helps him to be calm. I mentioned swaddling his arms to his sides, so he took out a large sheet, and we were able to get his arms swaddled down and legs covered. I think it did help for the first part as initially David was happy, smiley, and just looking around. Eventually though, David was done and continued to scream and kick for the remainder of the echo. I’m not sure whether they got the images of the pressure gradients across his stents while he was happy and calm or upset, but they said the pressure gradients across his septum were increased slightly from last week – up to a 7 from a 6. His pulmonary artery bands are also starting to get tight. We knew this would happen since they are a fixed size and David was going to continue to grow. The tighter they get will contribute to David’s oxygen saturations slowing declining. They are still within his normal range, but it’s an indicator that it’s approaching time to do something about it.

After echo David had lab. The lab phlebotomist checked David out and determined that she could not find a good vein for a blood draw, so they called in vascular again rather than have him endure an unnecessary poke. While she was examining his arms, hands, and feet for a vein, we think we figured out why David hates the blood pressure cuff – because it reminds him of the tight band they wrap around his arms looking for a vein. Anyway, his anti-coagulation results were a decent value again, so they won’t have to be checked again for another two weeks. That makes David so happy.  

After David’s vitals were taken, lab completed, and echo results received, David’s team comes in to discuss everything. They started off inquiring among themselves whether he had a date for his next cath, which triggered my memory about him needing one 7-8 weeks after his last one. Initially they made a note that said they would look into scheduling one for the end of February. However, after realizing his saturations have been on the decline and are now hovering in the high 70s decided they should move that up to February. It sounds like they will meet next week to come up with a tentative date for that procedure. In the mean time, we’re going to reduce his diuretic to once a day since that also helps to lower his saturations. 

I had inquired about the blood clot in his right femoral artery as well. He’s been on a blood thinner for a long time now because of that blood clot (and to avoid getting more – especially with the stents in his heart). That clot in his leg formed after his first cath when he was born, so he’s been on the blood thinners for a while now, and as of his cath last month, the clot was still there. She then informed me that after about 3 months, if the clot had not been resolved, it would likely never go away as it will have clotted completely over. I wondered what that meant for David – would it affect circulation to his leg or be painful? Well, she said it really only affects entry points for future cath procedures. The blood will find other ways to route to his leg, but it cannot be used for a cath. So, next week, they have added on some ultrasound appointments while we are in clinic to check out all the available entry points for a cath procedure and to determine which ones are open for him and which ones have clots. 

We spent the rest of the time discussing David’s eating struggles as of late. He gained weight, but it was not as much as they would like to see over the course of the week. He still continues to fight eating on some feeds. We have even tried to delay them a bit so he’s hungrier, but that doesn’t seem to matter. Adam and I decided to increase his overnight feeds again as well. We are hoping this helps him compensate for some of the calories he is not getting during the day. However, after one night of it, he had no weight gain this morning. It also took him a bit longer to finish each of those bottles because he wasn’t quite hungry from his last bottle yet. However, if David continues to struggle to gain an adequate amount of weight, or if he continues to fight and scream during his feeds, he will have to go back to the NG tube. They would prefer David figure out his eating issues instead of using the tube though since some babies become lazy eaters with it. At the same time, they don’t want him to continue to have negative associations with eating either. His reflux medication arrived from the pharmacy yesterday morning so we are hopeful that it will help him. One thought is he screams because of reflux irritation, and this should help with that. The jury is still out as to whether it will help with his spit up. We are also wondering if David has some FOMO (fear of missing out) when it’s time to eat. This would explain why he has so much trouble eating in the evening and weekends when everyone is home. Last night, Adam took him to a room by himself and he ate that bottle fairly well. We’re very hopeful that the reflux medication, removing distractions, and increasing his volumes overnight will help his weight gain. I keep reminding myself that fed is best if he needs to go back to the NG tube, and also perhaps it will provide an opportunity for a little more rest at night. I’m just trying to find some positives if we end up going on that route so it’s not as heartbreaking.