February 20, 2024

We’ll take the wins where we can get them, and today we had some small wins. 

• David continued to have seizures last night. After adding a third seizure medication, they have not noticed any more since 11 PM last night. All the seizure activity has been isolated to the area where there is blood in his head, and that area is small and is either growing slowly or not growing at all. If he continues to not have seizures by tomorrow morning, then the EEG may be removed. 
• The blood in David’s head is not in the brain, but outside of the brain. It is causing irritation which in turn is causing the seizures
• David had a bronchoscopy this morning where they found a lot of thick mucus in his lungs which they were able to suction out. David has been able to breathe a lot easier since then. 
• David is slowly weaning off ECMO. Although, this is a double edged sword. The slower ECMO moves through the system, the more anticoagulation it needs to make sure it doesn’t clot. The anticoagulation isn’t good for his brain bleed, but we need to wean off ECMO too. 
• David has been doing better clinically – his native heart rate and blood pressure have improved 

Some fun things for today:

• There was a special Bingo game today. We played Broadway Bingo – a couple Broadway performers joined us and sang some songs from the musicals on the bingo card
  • David won a Bingo! We got some puzzle eggs for him to play with when he’s a little older
• Our child family life specialist stopped by (with Fern of course). She brought a slumberkins otter for David and 3 hearts. This way David can have a heart here at the hospital and Eli and Anna can each have a heart at home as a way to feel connected to him. The older kids gave their hearts a hug and a big squeeze tonight so that David would feel their love. The otter also came with a book about Otter’s Heart Family – a perfect book for David.

Other things of note: 

• After meeting with the neurologist, it sounds like David’s seizures should stop once that blood is no longer pooled in his head. However, it could take a couple months for that, so he’ll remain on those medications for a couple months, although the frequency of them may need to be dialed back. Also, I remembered on my drive home this evening is she said seizures are a sign of brain injury. I could not remember the word injury last night at all, so I said brain damage. We’re hopeful that David doesn’t have brain damage, but it’s hard to know for sure without a MRI. 
• With the bronchoscopy, David got a larger breathing tube – hopefully he can get more air into his lungs with it now
• David also receives lung shaker treatments every 4 hours. Between that and the bronchoscopy, his x-rays throughout the day have shown increased lung function. 
• He tolerated a visit from OT for the first time since pre-surgery today… well, mostly tolerated. After 3 of his limbs, he was done and his nurse promptly told OT he was done for the day.
• After being cleaned up yesterday, David looked so nice with clean chest dressings. By the end of the day, he was a little oozy again though. Part of it is due to coming off ECMO. 
• As long as David’s lungs continue to open up, the current plan is to take him off ECMO tomorrow morning. There are concerns with keeping him on ECMO due to the brain bleed, and there are concerns with taking him off. I’m not sure that anyone knows exactly why he crashed the other day, so we risk that happening again, but hopefully David’s in a much better place and stronger than he was the other day. They will wean down his ECMO support through the night, and have him on the minimum setting that the machine allows by 8 tomorrow morning. Once the surgical team has assembled, they will turn off ECMO and see how David handles that before removing any of the cannulas. I wish we knew why he crashed the other day to avoid that happening again, otherwise, it’s probably something we will always worry about. The ECMO specialist seemed a little concern with the tiny amount of flow they want to go to based on the amount of anticoagulation needed to maintain the circuit. We’re just trusting that everything is going to go smoothly.