Today marks 2 months since David’s Norwood surgery. Two months in the CVICU. Two months with a nurse dedicated to only him all hours of the day (and some days two when he was helping train in some of the new/newer nurses to the unit). Last night David did not tolerate his SCUBA, so after a couple hours of crying they let him be on RAM and he tolerated that the rest of the night. He’s been showing he doesn’t need SCUBA anymore, so starting tonight, David now has to share his nurse with one other patient. He’s in a good spot since he doesn’t require as much care, so hopefully he doesn’t mind sharing, and hopefully he sleeps well through the night.
Otherwise, there are not many changes for him. Another wean to his methadone (withdrawal med). Tomorrow he will get another x-ray to see how his lungs look. They have sounded good so far, so hopefully they are looking good as well. If all is well, they may reduce his respiratory treatments and continue on his path of weaning the support.
It was such a gorgeous weekend. We found a park (Riverside Park) that’s about 2 blocks from the hospital and loaded up the stroller or wagon and brought Eli and Anna there. They were quite entertained since it is something new. Adam took them there in the morning, I took them there in the afternoon for a bit before Adam took them there again. They definitely had a fun day and needed a bath when we got home before falling asleep very early and quickly.
David got in a lot of cuddles with daddy and his nurse today, and I got a lot of playtime and book reading with him. One thing I forgot to mention yesterday is the cardiologist that was working this weekend stopped in after rounds. He is concerned about the left upper pulmonary vein stenosis, so he was going to chat with David’s main cath doctor this week about potentially getting a CT scan to look at it more. There’s only so much they can see with the echos, so this would provide them further details. He said that the research shows that the patients that received aggressive treatment early on for it fared better than those who did not receive aggressive treatment. So, stayed turned.
I’m happy to hear that David is doing well on RAM and weaning off methadone…..👍🏻 Prayers that his lungs will look good to reduce his respiratory treatments and that his left upper pulmonary vein stenosis proves to be of no concern 🙏🏻🙏🏻 The new adventure at Riverside Park must have been so exciting!!! Enjoy more cuddles and snuggles with David….and Eli and Anna 💙🩷💙 Blessings for a wonderful Monday to you all 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Love the smiles on all three kiddos! David’s happy personality is returning. Such joy! We continue to send our love & support for continued progress. ♥️
It looks like Eli and Anna had a grand time at the park. I am praying for the day David can join them 💕
So glad David is letting everyone know he’s ready for the next step! All three kids have wonderful smiles. I’m continuing my thanks to God for all the good progress and hope for more. Hugs, love, and kisses.