December 29, 2023

Clinic day today. Our main cardiologist is out of the country for a couple weeks, so we met with a different cardiologist from the single ventricle team. I thought I had never met him before but he informed me that we had met when David was in the hospital the first time. I’m always amazed at everyone who knows David and remembers all the times they have met him. When he had his cath procedure on Tuesday, the receptionist mentioned she had seen his name but since we had never been in that waiting room before, she figured it must have been the times he had come over during his time when he was admitted. Then when we were in his preparation room (which was right next to the one I was prepped in for my c-section), one of the nurses said she helped prepped me for the c-section. She said she had said so many prayers for David and was so happy when she saw that he was admitted to the CVICU because it meant he survived, and that she continues to pray for him. After he was all prepped and they were finally ready to take him back, another said that he was the first person who held him when he was born and he was slippery little fellow. In clinic today, one of the nurse members of his team said she had to ask someone the other day if this was the same baby Tilly that they did not expect to go home from the hospital because he looks so good. David has touched so many lives and I’m always amazed at the level of detail that these various nurses remember about him considering they must see lots of babies and special situations all the time. 

Anyway, back to the clinic appointment. It sounds like everything is good for this week. I was worried about David’s left leg getting clots much like his right leg go them after his first cath procedure. However, this time David has been on blood thinners from the beginning. They checked out his leg and informed me that he still had good strong pulses in it and seemed like it was doing well. That is one less thing to worry about at the moment. If he got a clot in it, he would no longer have an artery from either leg that they could use for a future cath procedure. I wonder how long it will take for the clots to completely resolve in his right leg. 

I had also been wondering how longer David’s sleepiness and smaller meals would continue and whether that was normal so far. They didn’t seem so concerned yet as he’s still recovering and he still has put on weight since his cath. 

Otherwise, he had another echo today, which they looked at. They said the pressure gradient in his atrial septum stent between his upper chambers was at a 4 – the lowest they have seen in a while. Also the pressure gradients at his PDA stent were very low as well. This made them happy and they said the cath procedure was successful and they were happy that they were able to get that procedure done when they did. 

I did ask about the tricuspid valve and the echo he got during the cath. It sounds like they were able to get the pictures they needed, and there is some leakage; however, they advised waiting until his cardiologist is back to go over those in further detail since they affect future care more than current care. At the end of my visit when they brought in our paperwork from today, the nurse asked if I had all my questions answered, and then mentioned that he was on a different route than they thought he would take. That was news to me, as I guess I don’t know if his route has changed, but  quickly realized he already was on a different route than anyone anticipated for him by simply being here. I’ll try to ask next week what they are thinking the next steps might be, but I think they will want to wait until his cardiologist is back. Last I heard though, we were on the route of comprehensive stage 2 surgery with tricuspid valve repair. 

We needed vascular when it came time for his labs again. This time they really examined him before attempting a poke, and thought they might be able to get the blood from one spot, but when that didn’t work, they did put out the call for vascular to do the draw. It sounds like for David’s future visits, they will make the call to vascular right away so that David doesn’t have to endure any additional pokes. His draws have been mostly for his blood thinner medication. This afternoon we got a call from the anticoagulation clinic in which they said they just learned from the pharmacy that since David’s values were within range, they can actually do the next blood draw in 2 weeks as opposed to weekly that we have been doing. So, as long as the team doesn’t have orders for other blood tests, David won’t need any pokes next week, which I know will make him super happy. 

Before we left clinic today, the dietician came by to see David. I hadn’t seen her since he was discharged the first time. We talked a bit, she gave me some ideas on things to try for his reflux, but she said for the most part, she was proud of his progress since leaving the hospital. She showed me his growth. chart and in the hospital it was mostly a flat line, but since going home, he has nice steady increase. She’s thought about coming by other times we’ve been in clinic but didn’t really have a need, and figured she would just stop by today to see how things were going. 

I think that’s all for now. I’m hoping David starts to eat a little bit more, is less lethargic, and gets a little more comfortable every day post his cath.