David has had an up and down day. Overall, I think he’s still in pretty good shape, but he has definitely not given his nurse a lot of down time today (or ever really). David’s big goals of the day were to continue to work on getting his lungs opened up, diurese him (lose some fluid), and keep him in good shape so that his chest can be closed up tomorrow. His chest has been open for more than a week at this point, and his surgeon starts to get worried about infection when it’s been open for so long.
David of course didn’t make it easy. He was off his paralytic for a bit today, and we saw him slightly move all his limbs and head. At one point he didn’t like the lung shaker, and his heart rate, blood pressure, and oxygen saturations plummeted. They had to stop that lung treatment, and tried using the pacer wires to pace his heart rate. They eventually stopped pacing him later when it didn’t seem to be working and David’s native heart rate was competing with the pacers. He still has his swings and it’s hard to know how to control him to keep him happy. His nurse is trying her hardest to anticipate what David will do next and adjust his meds before he swings, but David loves to remind everyone that he is in charge.
This morning, he also got his EEG wires removed from his head. It’s nice to see his hair again, although it’s quite covered in glue. His room is slowly getting bigger and bigger as equipment is removed – yesterday ECMO and the ECMO cart left, today the neurology cart left too. We spoke to neurology, and found out that he’s back down to two seizure medications. We also learned that those medications come in IV and also oral forms, so if he does go home on them, he won’t have to change meds. David also tolerated his OT visit today, which was excellent. Once again, David won at Bingo! Thursday Bingo is definitely the highlight of the week.
Eli and Anna visited the hospital for a bit this afternoon. I played with them outside, we got some dinner, and then Adam took them to the Endzone for a bit before I took them home for bed.
By the time I left today, I don’t think David had made much, if any, headway on his goals today. His output was slightly more than his input, but not as much as they wanted. His nurse did remind me that he still had 16 more hours to work on that goal before he is scheduled to be closed up. His ventilator settings may actually be providing more support now than at the beginning of the day. David did not tolerate the PEEP wean well and in order to try to stop one of his swings it was reset to yesterday’s value and the percentage of oxygen provided was pushed up as well. So, although this morning his lungs looked better than yesterday, I’m not sure if it remained that way throughout the day. Also, David continues to have his large swings. So, it hasn’t really been a day of progress, or steps in any direction (forward or backward). I guess we’ll see tomorrow if his surgeon still thinks he’s in a position to close his chest, or if he wants to give it another day.
It is good that David is letting his team know who’s in charge ❤️ He is so adorably cute how could one not encourage him to be in charge! This update is very encouraging on David’s progress. He’s definitely teaching lessons in patience, love, how to let people know what you need, faith, the power of prayer, medical terminology, but most of all….FAITH. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
David sounds like a fighter to me! You don’t know me but I have been praying for David and your family. My niece Leah was David’s age when she had to be hospitalized and all those doctors and nurse’s were such a life line to Leah’s family. Please know that you are all being held in prayer as you navigate each and everyday! Take care.
Sigh … there are days that none of us can seem to accomplish anything no matter hard we try … may today be a better day. Praying for God to hold you all close in his love.
Thank you for the update on yesterday’s stresses and gains. Glad your family could all be together… Your kids are all so cute. Love the one of Eli in his heart glasses! Praying for David as he goes through many levels of healing, and for all of you who care for him to be held in God’s strong love yourselves.