Not many changes from yesterday. David’s goal is still to try to take off some of his fluids, but he’s yet to be negative. They continued the pause of the autowean of his withdrawal meds. He’s still agitated and going through withdrawal, so it’s not time to wean them yet. His vent setting was reduced on the RAM to match that of the SCUBA (14/8). He had an anti-XA lab and his lovenox (anticoagulation med) was not quite therapeutic this week, so that dosage was be increased. David also had an echo.
OT came by today, and David once again showed his poker face. He really seems to like singing songs like wheels on the bus and itsy bitsy spider, and he also tried out a new toy that lights up and makes sound. Since his wound vac was removed yesterday (I think I forgot to mention that), we ended by doing some modified tummy time – basically holding him in an upright position on our chests. It’s been so long since we’ve held David this way and he seemed to enjoy it, as did I. We then continued our snuggle in this position until it was time for his echo.
The echo didn’t show much of any change from last week. His tricuspid valve still has a moderate leak. They didn’t look at his pulmonary veins this week for whatever reason.
Eli and Anna had swimming lessons this evening, so it was just David and I hanging out. We had a really good conversation with his nurse. Yesterday was her first day taking care of David, but she knew of him because she was prepared to help with the cath lab in case he came early before he was born, and she has also assisted in his room from time to time. She’s been a great nurse for him this week, and she encouraged us to have some conversations with the cardiologists to ask questions about David’s plan of care – especially since his trajectory has changed several times since he’s been born. Adam and I really like it when others are truthful and honest with us, but we also try to not cause problems and let the team do their thing because they are much more knowledgable in these situations than we are. If they are not worrying, then we try not to either. We get most of our information from rounds – which just covers how to treat the patient for the day, so our nurse encouraged us to talk about future care and what his echo results mean. We’ll start those conversations tomorrow (if we notice the cardiologist in the room – sometimes they are sneaky).
David’s nurse also helped to give him a nice spa treatment bath. David wasn’t a huge fan, but it’s so nice seeing him nice and clean – and he was super cute!
David is certainly growing so rapidly it seems and he looks so very alert and aware of what is going on 👀👍🏻👍🏻👍🏻 I really look forward to your updates about all three of your babies 💙🩷💙 God’s blessings are abundant….. Hallelujah 🙏🏻
Prayers continue for both David and his family.
The photos of all your kids are so sweet, and the turban photo is terrific! But the sweetest one is of you holding David close. So great to see that can happen again. It must be good for his health (and yours!). I’ll keep praying. I’m so glad you have good people around you like that nurse, who know the system and want to help you navigate it and get what you need.
Love the modified tummy time pic of both of you❤️So so sweet! 🥰
What a cute little guy all wrapped up in his spa towels! I continue to be amazed by the care provided by his team, they do so much more than giving meds and watching equipment. Praying for support and insight as you start your conversations with the cardiac team.