David’s big change is he was on CPAP all day and all last night! After seeing the ventilator today, I realized he still has a PEEP of 8, which he adores, and CPAP just doesn’t add any additional PEEP like BiPAP does. BiPAP has a pressure support that’s higher for inhaling and a different pressure support for exhaling, on CPAP both of the numbers are the same.
Otherwise, it’s the same sort of changes for David today. Increased his fortification again so that they could stop his lipids. Another drop on one of his withdrawals medications today (his ativan I believe). And they are still trying to get fluid off of him. David loves to hold his fluids, no matter how much diuretic he gets (unless it’s his metolazone, which they have not given him yet). Today, his fluid status was up quite a bit, so they are going to try an IV diuretic (diuril) tonight.
For the most part, David tolerates being awake for short periods of time, and his smiles are becoming more frequent (unless you tell someone to come see them, or try to photograph them). He also did a better job of leaving the tubes on his face alone today. He got to play with OT and music therapy again and keeps improving so much every time. Speech also came by this morning. David was in his chair and pretty much slept through the whole thing. I mentioned we did a couple paci-dips yesterday with his bear and his milk, and she was thinking he should do more of that, not that we remembered today.
This evening, the kids wanted to hang in his room again. Eli really loves the new art mat that David won in either trivia or bingo last week, so that’s what he spent the evening doing. It just takes water and has paint brushes and markers that fill with water, so it’s mess free mostly, and when it dries it goes back to a blank canvas. Anna did that with him for a while, but also wanted to engage with David. She picked out toys to play with him and books to read to him. When we left, Adam got to cuddle with him, and said David enjoyed looking at the artwork Eli and Anna have done that we have put up on the walls.
When I came in this morning, it turned out David and his nurse were busy yesterday doing some artwork of their own. Little peeps to match his outfit yesterday. It was absolutely adorable! It’s on his door for all to admire as they walk by.
Jessica, your post tonight sounds full of excitement! That has got to be just so incredibly heartwarming to see more smiles coming from David😊 The pictures that you were getting of him are so adorable, especially the ones where he is focusing on something important! David’s care team is certainly doing a great job! It’s comforting to know that all of your family is cared for as well at the hospital. I couldn’t remember where he is staying at but when I drove through St Paul on my way down to Lakeville, I said a prayer and sent it on its way to wherever you are at 🙏🏻 I pray that you will always feel God’s presence and that you can give him your concerns and He will guide you through when you are worn……🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Thank you, Pat! We’re in Minneapolis at the University Childrens Masonic hospital.
Love the Peeps picture 🐥 David is learning so many skills – art, bingo, trivia – what a bright little boy. And it is so sweet to hear how Anna cares for her baby brother. Praying for continued slow and steady steps forward.
God has a special plan for the future. He is responding positively to just about everything. Especially the extra holdings. Glad that was added. I can’t wait to see him grow up. Both his siblings are and will be instrumental in his progress. I think he is forming a bond with them that form doesn’t develop between regular families . I pray it will always be there. Prayers and 🫂
I’ve heard this song so many times and tonight it made me think of David and how strong he is for such a little guy And what an impact he is making on countless people. I think oftentimes we learn the really important lessons in life from God through children. I pray that I can meet my giants with confidence and the faith that I have in God my Father, because little David certainly does🙏🏻 Confidence Song by Sanctus Real I’m not a warrior, I’m too afraid to lose I feel unqualified for what you’re callin’ me to But Lord with your strength, I’ve got no excuse ‘Cause broken people are exactly who you use So give me faith like Daniel in the lion’s den Give me hope like Moses in the wilderness Give me a heart like David, Lord be my defense So I can face my giants with confidence You took a shepherd boy and made him a King So I’m gonna trust you and give you everything I’ll be a conqueror ’cause you fight for me I’ll be a champion claiming your victory So give me faith like Daniel in the lion’s den Give me hope like Moses in the wilderness Give me a heart like David, Lord be my defense So I can face my giants with confidence I’m gonna sing and shout and shake the walls I won’t stop until I see ’em fall Gonna stand up, step out when you call Jesus, Jesus I’m gonna sing and shout and shake the walls I won’t stop until I see ’em fall Gonna stand up, step out when you call Jesus Give me faith like Daniel in the lion’s den Give me hope like Moses in the wilderness Give me a heart like David, Lord be my defense So I can face my giants with confidence, yeah Give me faith like Daniel in the lion’s den Give me hope like Moses in the wilderness Give me a heart like David, Lord be my defense So I can face my giants with confidence
I love that song. Loved it before he was born, but ever since having him in our lives, it has taken on a new meaning and I now think of it as David’s song. One of my prayers before he was born was that he could conquer the giants in his life, like David in the Bible.