December 27, 2023

Yesterday was David’s cath procedure. It ended up being a much longer day than we anticipated, but since David spent the night in the hospital, I opted to catch up on some sleep rather than posting details. We ended up bringing Eli and Anna to the hospital for the procedure, and they did so well! David was a champ too. I expected to have a super fussy baby who was going to be demanding food, but for the most part he was just a sleepy baby. If he started to get a little upset, it was nothing a few snuggles couldn’t solve.

First the procedure got moved up by a day for scheduling purposes. In the event that a stent becomes dislodged, the cath team cannot remove it, instead that must be done surgically. Looking at the schedule, it looked like the surgical team was busy until quite late the next day, so despite David’s procedure being scheduled at 1, they would not have felt comfortable to start it until the surgical team was available. Therefore, they would not have started his procedure until evening which would have been a really long day for everyone. 

We still ended up waiting for the surgical team to be available, but not nearly as long. We didn’t realize we were waiting on them though an thought we would be getting lunch while David went back for his procedure so we were a little unprepared when it came to food and Eli gave a constant reminder of how hungry he was. 

It was almost 5 hours before we got word that the procedure was finished. We got updates along the way, but I was still feeling rather anxious at that point. For some reason, I had it in my head that it was going to take an hour or two. They were able to balloon his atrial septum stent, but not quite as large as they would have liked. That stent is only attached at one little point, and the fear was ballooning it further might dislodge it. After several balloon attempts they got it up to 8.2mm and it started at 6mm. This will allow more blood flow between his two upper chambers. 

Afterwards, they moved their attention to the PDA stent. The size of this stent still looked good, but the pressures were disagreeing. Imaging then showed that David had quite a bit of tissue growth inside the stent. So although the stent was a decent size, his tissue growth made the flow through it quite small. I believe they tried a balloon but that wasn’t going to help remove the tissue that had formed inside of it so ultimately they ended up placing a second stent . Now David has two PDA stents and one atrial septum stent. The hope is that this will buy David another 7-8 weeks (much like his first cath procedure). At that point he may finally outgrow his stents or PA bands and be ready for another procedure or surgery. We’ll continue to monitor his progress every week in clinic to determine when we need to take the next steps forward. 

While David was undergoing his procedure, we were doing our best to keep Eli and Anna busy. While David was being prepped, a member from child family life came by and let us know that there was a child’s play area they were welcome to use. She learned a bit about them and pulled out some paw patrol toys, so Adam was able to take them down the hall and they could play while I snuggled David in the room. After a while, Eli really wanted some lunch. We were afraid to go far before David left so Adam ran out to the car and grabbed a few more snacks and I tried to distract Eli from his growling tummy by letting him watch the new Paw Patrol movie. That seemed to work pretty well. 

Finally around 1 PM, the surgical team finished with their surgery, so the cath team was ready to take David back. We all walked with him down the hall and gave him a hug and kiss goodbye and told him how brave he was.  Then we continued on down to the cafeteria to find some lunch and Anna kept shouting “bye bye David”. After lunch, we went to the children’s play area. Anna did some “bowling”, painting, and played with some Paw Patrol toys. Eli did some painting, played basketball, and once he found the paw patrol toys, he was set for the remainder of the time until they closed. After that it was back upstairs to the waiting room which we had all to ourselves at this point and they watched some Disney Jr – and saw my favorite Bluey. We eventually ordered some dinner and returned to the cafeteria to eat it. On our way back up we got word that David’s procedure had finished so we were eager to meet with the doctor to find out how it went. 

After meeting him and waiting around some more, we finally were greeted by his nurse who brought us over to his room. I’m so grateful that David won’t remember these days. By this time Anna was exhausted and just wanted to go home, and since David was sedated it was a brief visit to tell him we loved him and were proud of him and wish him good night. 

I returned today by myself and was happy to see he was off the high flow air. They said he ate well overnight, and were going to do rounds and begin with him because they wanted to discharge him this morning. They adjusted one of his meds and we spent the rest of the morning waiting for a new label to be sent over for us to put on the bottle. I thought this was a little odd since his meds had been adjusted in clinic and we didn’t get new labels, but I remembered we needed new labels before we left the hospital last time (with the drugs in hand). After a few hours, they just discharged us since I had already spoken to pharmacy and knew the new dosage. 

We are so happy to be back home. I was reminded of just how difficult it is to hold David and feed and burp him when he’s attached to so many monitors. David doesn’t like it either. Especially the blood pressure cuff that goes off every hour. He’s been pretty sleepy today, but that rest is good for him. Although, as I’m writing this, he’s currently awake and moving his limbs all over the place. Tomorrow should be a day of relaxing at home before returning to the clinic on Friday.