Constant tweaks and medication changes seem to be the theme of the day. David’s arrhythmia returned overnight, so they tried the new medication (esmolol) and it seems to be working. However, it turns out that they no longer believe that the other arrhythmia medication (amio) caused his liver enzymes to skyrocket. The leading thought now is that those numbers were caused by everything that took place in the operating room, and his body was just slow to respond to it. This is especially because his numbers took a good dive back down today. They are still elevated, but are 1/3 of the level they were yesterday (yesterday they were 15x higher than normal).
Today they ended up switching David’s anticoagulation medication to a different one (Bival from Heparin). His lab results were all over the place on the last one, so they are hoping for some more stability on this new one. David gets labs every couple hours to check on everything (it’s less frequent than once an hour, but I’m not exactly sure the frequency – when he’s on ECMO then it is once an hour).
David was also tolerating his feeds well. The goal was to increase his hourly intake by 5ml every 8 hours, until he reached his goal of 27 ml per hour. However, as they were adjusting medications based on lab results, they eventually stopped his feeds entirely. He was able to get one stool out before that happened.
David’s blood pressures have also been on the lower end today. They tried pacing him to get them up, but that didn’t work, so they added one of his medications (epi) that had been turned off. That didn’t seem to have much effect though. They had stopped steroids this morning, so they may add a little of those back to help him as well.
His lungs are starting to collapse again as well, so they added back the patting that he received during his first hospital stay. Respiratory also retaped his tube today, and David had OT visit as well. It has been difficult to get fluid off of him today with all the medication balances, so he’s looking a little puffy again. They eventually gave him more blood which also doesn’t help getting fluid off.
Eli and Anna got to spend some time doing activities with Adam this morning (Anna’s gymnastics, Home Depot building project, and then some shopping), before arriving at the hospital early afternoon. They then spent time in the Endzone working on crafts, and building with magnatiles among other activities. After dinner they then went outside to burn off some energy. They were both quite exhausted when it was time to leave for the day.
The number of people in David’s room at once was never too high, but David seemed to have a constant stream of visitors trying to determine which changes he’d respond best to. Hopefully his liver numbers are back to normal tomorrow and David will have a nice calm day with less medication changes.
Thanks for the updates. So glad that Eli and Anna are having fun there (and that they sleep well for you after all that activity)! Praying for good outcomes for David with his blood pressure, lungs, medication changes, labs, and procedures to come. Praying also for his medical team and for you his family. Hope you feel the support of the many people caring for David in person and also in prayer, as you all are held in God’s love.
Sending love and strength to David & all of you as he continues his journey.
Thank you for all the updates on David. Poor little guy. I hope tomorrow is a much better day. Praying he will continue to get better from now on. Love from Rocky and me.
Always in our prayers, hope you feel the prayers of so many and that it gives you a small amount of peace. Jim and Karen
Continuing to pray and believing for the best outcomes for David.
So many prayers every single day are being said for David and your entire family and his entire medical team.
Sending prayers and love for all of you❤️