February 25, 2024

Today was an okay day. We started and ended pretty much in the same place, yet there were lots of procedures in the middle. 

David’s chest X-ray this morning showed improvement on his right lung, but his left lung remained unchanged. His pulmonologist is taking credit for the right lung. She was back to give him another bronchoscopy, and this time rather than using a saline solution, she was going to use a different solution that is better at breaking up mucus. She said she was really going to focus on that left lung, and she would leave some of the solution in the lung so that when he was suctioned later, it would hopefully help the suctions be more productive as well. 

After his bronch, vascular came by to place a new IV. The other day, he had one in each arm and leg/foot, but they have slowly been failing. His nurse said the one where his sedation meds are administered started to fail and he started to wake up a bit. It was good to get a new IV placed so that there is always a good access point.  

Throughout the morning, they had been weaning his ECMO, and around noon they were going to try to pull him off to see how he handled it. I did inquire what would happen if it turned out the 6mm shunt that is now stented open sends too much blood to his lungs. His surgeon said that was a concern for him as well. There were two possible solutions – one is to put a band (much like the pulmonary artery bands) around the shunt. The drawback with this is that the shunt is known to produce clots when narrowed, so they would have to really increase David’s blood thinners, which they don’t want to do with the blood that’s in his head. Another possibility would be to treat David for heart failure by adding or increasing heart failure medications. 

It turned out none of this mattered. They closed the ECMO circuit without pulling him off, and his body reacted much the same as it did last week. I did inquire later (it’s hard to think of questions in the moment), whether that meant his body acted like it did on Friday when they tried to close his chest, or last Wednesday when he came off ECMO. The perfusionist who runs the machine said it was like last Wednesday, although it sounded like his saturations were in the 60s or even high 50s. Regardless, this was not where they wanted him to be coming off it, because it does not set David up for success when his chest is closed again and we’ll be right back where he is now. 

His nurse did inform me that there are basically two camps right now about why his saturations go so low when he’s off ECMO. She said the lung people say that there is a problem with his heart, and the heart people say there is a problem with his lungs. I kind of got the feeling for that already. The pulmonologist said his lungs look good, and the surgeon once again says we’ll wait another day for the lungs to try to improve. So tomorrow, David will have another bronch to try to get his lungs opened more. Then instead of his room becoming the operating room, David will be transported to a real operating room to try to get off ECMO once again. If it doesn’t work tomorrow, his surgeon said it will be time to try to think long and hard about what the next step is. Does David really need a 7mm shunt? That’s unheard of and seems unlikely. So then he’s wondering if the Sano shunt is just not working for David and perhaps he needs a central shunt. However, these are discussions to be had at a later point if it turns out he cannot get off ECMO tomorrow. There are also clots forming in the veinous line of the ECMO machine. There was discussion of replacing that today, but ultimately, it was decided to leave it for one more day. It is very jarring to the body to replace that, and she would rather not disturb him if he’s going to be disturbed again tomorrow. 

In other news, neurology still has not seen any seizure activity. The date of the EEG removal keeps getting pushed back (probably due to him being on ECMO and hopefully off soon). His daily head ultrasounds have not shown much change with the blood in his head either (so it’s not growing it seems). David also tolerated quite a bit of massages and movements this afternoon. Usually he gets hypertensive with too much, so hopefully he’s heading in the right direction. He was on 50% ECMO today after the attempt, but tonight they put him on more ECMO support to try to give his body a lot of rest so it is in as best shape as it can be tomorrow for the next attempt. 

Otherwise, Eli and Anna played in the Endzone again. They made a little aquarium craft, played with a few toys and then spent the rest of the time building with magnatiles. Eli built a huge tower and then Buzz Lightyear’s garage that holds rocketships. They got a nap in during David’s ECMO attempt, and then played outside for the afternoon. 

We’re preparing for another long day tomorrow. Hopefully David tolerates being off ECMO, but I honestly don’t trust him.