May 10, 2024

I know we initially planned on the cardiology team meeting today in conference to have an in-depth conversation about David’s next steps, but it did not happen. It was the planned before he had his brain MRI and cardiac cath scheduled for Monday, both of which will contain valuable pieces of information that could help lead those discussions and decisions. With that being said, we still plan on having our care conference on Tuesday since we’ll still have plenty to talk about at that time – we’ll discuss his cath and MRI results. We may not have next steps necessarily, but we’ll still have some answers to current unknowns.

David did get on the schedule for MRI on Monday. He’ll be the first case of the day. After asking politely for two days and not getting a response, his provider had to turn on her more stern mode to get that scheduled. The doctor said he was receiving calls non-stop as cardiac anesthesia, MRI, and all the different players were calling him to coordinate. However, it was better to get that organized and everyone on the same page today than scramble on Monday. It sounds like David will go to the OR where they will intubate him and get him sedated, then go to the MRI, and once he’s done there will head up to the cath lab for his cath procedure.  

David did not have any changes today. As he’s weaning off oral clonidine and transitioning to his patch, his heart rate and blood pressures are on the low end. Tomorrow he should be completely off the oral clonidine, so hopefully we see those start to come back up – I would feel more comfortable if they were a little higher. 

This morning I brought in all of the different brands of pacifiers we have at home to see if David would take one since he seems to be rejecting bear. He mostly rejected all of them, except one he tolerates in his mouth for a lot longer before it comes out, so I think we’ll work with him on that one.

David had a date with OT and with speech today. He worked on his tummy time and rolling and stretching with OT. Our homework for the weekend is to get him down to the floor mat and work with him on the same sorts of things. For speech, he refused to show her how he will take this new pacifier. He really likes to do things on his own terms. We did talk about next steps and what different things would look like for him. 

The nurse from cath lab stopped by to briefly talk about Monday. They will do a hemodynamic scan and grab all the different pressure gradients. Depending how those numbers look, and how stable David is, they may repeat that using nitric oxide to see how those pressure gradients look. After taking those pictures and grabbing those numbers, they will examine what looks to be a collateral on his echo. If it is an collateral (a new blood vessel that the blood is moving through) and blood in flowing to a place they do not want (in this case, into his pulmonary artery), they will put something in it to stop the flow – either a coil or a plug. They will also look for other vessels that may need action as well. 

Otherwise, David was pretty fussy this whole day. We are noticing that if he is awake, the only thing that seems to make him happy are his wagon rides. He was not paired with anyone today, so he had his nurse all to himself. So, he took an early afternoon wagon stroll around the unit. He did 4 laps and was just starting a 5th, when he decided he was done, so we went back into the room and he took a little nap. Eventually, he woke up and only went back to sleep if he was sitting in my lap. He seems to want to sleep in the seated position.

We tried another dance party to keep him happy today, but we did not have as good of luck with it, because David is on to me – he knows it’s my excuse for him to stretch and work out. He did raise his eyebrows when Blippi’s Monster Truck song came on – it seems he likes monster trucks. We eventually decided it was time for another wagon ride as folks across the unit hear his cries. While Eli and Anna went down to the Endzone, David smashed his lap record and did 10 laps! We got a low battery on his travel monitor as we started lap 9, but after we learned that 10 laps is a mile, we needed to do 10. David fell asleep during that ride, but woke up for the final lap or two. He’s becoming a wagon pro. Of course, he was unhappy to go back into his crib when the wagon ride was over. Since he seems to like the constant motion, his nurse placed an order for a mama roo – we’ll see if we get one soon. They were out of stock last time we placed an order for one. In the mean time, I found a video of a car driving through Rocky Mountain National Park, and we can shake his crib slightly, so hopefully David thinks he’s going for a car ride. It seemed to work for a little bit before I took the other kids home. I wonder if this trick will work again tomorrow.