February 24, 2024

David had quite an exciting overnight, and then he’s been resting since. Since Adam spends the night with David, this is what he detailed. At around 9:30pm his nurse noticed a puddle of blood on his bedding. He changed David’s bedding and then found it was still bleeding and not left over from earlier in the day. At 10:30pm David’s surgeon returned to check on his ECMO attachments and his open chest. It sounded like there was a loose tie which needed to be fixed, and then David got cleaned up. A little after midnight Adam was allowed to go back into the room. By morning, David’s nurse said he had his best night he had seen with him, and he has had quite a few nights with David. I’m not sure if he meant the best for this stay, or going back to November as well.

When I arrived in the morning, his day nurse had him cuddling (well, holding hands) with his new otter stuffy. I forgot that about this nurse – she likes to find personal items to place near the child. David looked so peaceful holding on to that otter. He also looks like he has been having good urine output, because he’s not looking very puffy. I then read him the otter book since he was holding onto the otter, and then I read him his book he got for Valentine’s day. Soon after that, I got to help clean him up – he had some iodine and blood around on his body and he looked so nice after he was all clean. This was in anticipation of his IV dressing changes. Once those were changed, he looks so clean. 

David also had his bronch this morning. His pulmonologist that we see in clinic performed it this time. She explained to the room that she first met David in clinic as an outpatient, and told everyone he most definitely does not have nutmeg lung. It was really good to hear that again. I’m always worried for some reason that it is dormant and going to come rear its ugly head later, even though I don’t think it works that way at all. It’s still on his chart as a diagnosis so I’m always nervous. As she was doing the bronch, she noticed some parts of his lungs were in a slightly different spot than normal, but it was not uncharacteristic of a cardiac patient. After the bronch, they did another chest x-ray to see if there was any improvement. It did not look like much, but it may take a little bit of time to see it on x-ray. They’ll see how he’s doing and may do another bronch in a few days. 

David’s nurse helped to make some handprints this afternoon. She’s really good at finding ways to keep us involved and feeling connected to him when there’s not much else we can do. I also gave him a manicure by clipping his nails and massaging some lotion into them and and his hands look so much better now. 

Neurology stopped by this morning. They have not seen any seizure activity as of yet, but they will keep the EEG leads on for another day. 

David’s big goal of today was to rest and to try to get some improvement in his lungs, so that when he’s ready to be off ECMO again, his lungs are working very well. I guess he rested as well as he can in a hospital where he’s being disturbed every hour. Depending on how he’s doing, they may try to wean the ECMO tomorrow, otherwise maybe Monday. They don’t want him to be on it for too long, but also they want to set him up for success. 

Adam brought the kids to the hospital this afternoon. Anna created a turtle in the Endzone while Eli wanted to read a book but did eventually play with some legos. When that closed, Eli continued reading while Anna and I played outside. She got cold, so we found her mittens and then we all played outside. Afterwards, we ate dinner. Before we left, David’s nurse brought out this huge balloon thing to show the kids so we walked the kids past David’s room so they could see it and meet his nurse. I don’t think they saw David – he’s probably hidden behind the ECMO machine, but that balloon was a huge distraction. They then took the valentines balloons home.