Small changes for David today. His feeds had increased fortification added to them – from 22 kcal to 24 kcal. He was on a weaned vent setting for SCUBA last night and did well (12/6) – reduced PEEP even. We know his lungs really appreciate a PEEP of 8 though, so he was on RAM today on 12/8. He’s doing so well with these weans. Tonight they are going to try SCUBA with CPAP rather than BiPAP. I think this means no additional PEEP will be supplied. The last time David was on CPAP after two days his lung started to collapse, so hopefully all this slow movement has strengthened his lungs so he doesn’t have to take too many steps backward again.
His other changes for today were medication changes. They did a manual step on one of his withdrawal medications (methadone) today – his autowean is still paused. David seems much happier with these smaller weans. They also tweaked his diuretics by increasing one (bumex) and the frequency of the other (diuril). So far his kidney numbers (BUN and creatinine) are still looking really good, which is a concern they will go in the other direction as he gets fluid off. In fact, his BUN is the best it’s been in a long time – although, now that I say that, it will spike again tomorrow.
In case I haven’t mentioned it lately – David still has the best nurses caring for him. Today the nurse caring for him brought in a couple outfits for him to wear. He looks so good in the one she put on! She also found him some fun videos to watch – like a jellyfish live stream, an aquarium, and puppies! He really seemed to enjoy the jellyfish.
David also got in so many snuggles today. The awesome hospital volunteer came and snuggled and played with him on two different occasions today – each for about an hour. David really enjoys his time with him, and we are so grateful that David gets some time out of the bed when we’re unable to give him our full attention (like when we’re working or eating dinner with the other kids). I also got a long afternoon of cuddle and playtime with David. He also worked with his nurse on some OT activities – his coordination and strength are slowly improving.
Today’s activity for Eli and Anna was just reading stories together – lots and lots of stories. They also enjoyed playing with David’s new toy he got for Bingo today. David was the first player to get Bingo, and was very excited.
I love the photo of him sitting up. Thank you Lord
Love seeing David sitting up in his chair! I am praying for the nurses and all the medical team for their care of David and your family. Thank you God.
His smile!♥️ I’m thinking with his love of jellyfish & his octopus a future marine biologist! Grateful for continued small steps forward! Love to all of you!
Good Morning David, Jessica and Adam and Eli and Anna ☀️ What a wonderful day we have before us 🙏🏻 While they may be small changes for David yesterday, things are definitely going well for this special little guy 💙 Good morning care team 👋🏻 I am praying for continued progress for sweet David and thanking God for his continued blessings upon all of you 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
David looks up and alert and even enjoying himself in these photos, hurray! What a super community kid, with so many caring for him and holding him. So glad especially that you and Adam get to have snuggle time with David regularly now. ❤️ He looks adorable in his outfit… ready for school? (OT) We’ll keep praying for his continued growth and healing and all the weaning. And for David’s story-loving siblings and his Bingo helpers too!
David is improving every day. Too bad he is too young to go to vbs this year. The theme is scuba diving for Jesus which as a scuba divers already he could show vbs how it is done. He looks so good in that chair. Hope we will see more smiles soon. Love and prayers.