February 21, 2024

So, there are certain words we don’t use around David anymore, and no one trusts him either. He likes to prove everyone wrong, both good and bad.  We are one week post-surgery today, and we made steps in the right direction – David is off ECMO! He’s maintaining all on his own his blood pressure, heart rate, and oxygen saturations, but there is room for improvement. His blood pressure spikes from time to time, his saturations sometimes dip, and his heart rate can get high or low. The surgeon would like to work on his lungs and getting them opened up. Then David’s saturations should improve and he’ll be able to be weaned from the vent. In addition to being off ECMO, they have not put him back on the pacer that controlled his heart rate. So far he’s maintained his heart rate in a reasonable range, but if it becomes a problem, the wires are still in place and it could easily be turned back on.  

We did ask his surgeon what he thought caused David to crash the other day since we heard he had a theory, but it is more speculative than backed by data. Basically something like that can happen when a valve is repaired in conjunction with another large surgery. In David’s case, his right ventricle was used to the leaky valve, so it didn’t have to work very hard to get blood to move from one location to another (it just didn’t know that it was not all going to the right location). So, after it was repaired, the right ventricle had to work harder than it was used to in order to get blood out, and this tired the heart out causing it to need a rest – which of course it demanded in the most dramatic fashion. We’re hopeful that his heart just needed that rest and time to grow stronger and that David will continue to make progress and not end up back on ECMO. 

Now that David is off ECMO, it should also give the bleed in his head a chance to stop and heal. We have not heart of him having any more seizures, but he will continue to keep his EEG monitor on until at least tomorrow morning, just to be sure nothing pops up after coming off of ECMO. His lungs are also improving with the shaking treatment and suctioning. I’m not sure if they will do another bronchoscopy to clear out more gunk.

Coming off ECMO was a whole ordeal. To do this, David’s room becomes a makeshift operating room. Before they began, they did an x-ray this morning (I think mainly to check on how his lungs had been progressing and whether they were in a spot to support him if he did come of). His stent looked a little funny on the x-ray, and there was some fear that the stent in his Sano shunt may have become pinched while David was receiving compressions on Saturday. If that was the case, then David would be escorted to the cath lab in order to fix that shunt before even attempting to remove ECMO. So, they were going to take another x-ray before beginning just to double check the stent. It turned out, that the stent looked good, so they were able to proceed. First they left all the ECMO equipment attached to David and turned it off (or maybe a closed circuit – I think we heard both possibilities). After David proved he could handle that, then they went ahead and surgically removed the cannulas from him, and cleaned up his chest. They left his chest open since there will likely be swelling and you never want to close a chest with swelling. There is a possibility that his chest could be closed on Friday, but that’s only if David is ready for it. That is once again a bedside procedure. 

While they do these bedside surgical procedures, we are not allowed to stay in his room. We went to a consult room to wait. While we were waiting in there, Fern and her mom came and stopped by for a visit. We made a space for Fern to cuddle on the couch and she came up and snuggled and started snoring on Adam. They also brought a beautiful handmade wooden box to put David’s Beads of Courage in. I didn’t do a good job initially of recording his beads, but I decided to start it up again starting on the date of his Norwood surgery. It has some beautiful colorful pieces in the wood that will look very lovely as the light from his window reflects off of it. They also brought a lovely book called The Invisible String about how our love connects us no matter how far apart we are. I read it to Eli and Anna tonight and Eli loved it. I was surprised when we grabbed it from me when we finished it because he wanted to look at it more. I’m not sure he fully grasped the concept of invisible though because he kept saying he could see the string. Before he even knew about the book though, he spoke about how he wanted to add a string to his new heart that connects him to David so that they would be more connected and so David could hear him. 

Here’s hoping tomorrow we make some more tiny steps in the right direction. David still likes to make others come running into his room. His nurse moved his pulse oximeter today and he had a beautiful wave form from it, but it was only reading 20%. We knew that was wrong, but 3 others came running to check on him. The wave form is usually how we know it is reading accurately so they were concerned. After moving it several more times (you don’t want to leave it in one place for too long), a good reasonable read was finally found.