Not much in terms of an update. David is off of oxygen with dips here and there – especially when he gets upset. He still is not eating orally – but he did eat about 20% of one bottle today and took a couple sips of another. They are still hoping to get a CT scan scheduled for tomorrow and so that they will have all the info they are looking for at this point. The cardiology team holds weekly conferences on Tuesday and Friday, and they plan on discussing David at the Tuesday conference since it is the soonest and most attended one. David will continue to be here until Tuesday after that conference when next steps will be decided. If he needs something urgently, he will likely stay inpatient. If they schedule something for next week, then he may get to go home for a few days. Regardless, they don’t want his left upper pulmonary vein to be restricted for too long because it can affect his long-term lung health. These next few days in the hospital will also give David a chance to start eating, figure out any medication updates and hopefully become happy again.
Eli and Anna have been enjoying their time in the hospital this weekend – with lots of time down in the endzone (the indoor children’s area), the outside playground, and the library when it was open on Friday. They’ve played hockey, slid down countless slides, lots of painting, other crafts, played with toys and read many books. Today was the first time they took a nap here! Early on they slept in the car either leaving or coming or both depending on if we allowed them in or not, and full days here they have always skipped it. Tomorrow they will return to school and we’ll figure out how to balance our time yet again. David is getting older and knows when familiar faces are not around, so it’s harder to leave him – especially when he’s upset. We definitely love soaking up the David cuddles when we’re here though even though it’s hard when he’s connected to so many things. So hopefully they get that scan tomorrow and that David decides to start eating orally.
Sending love as you wait. Such a challenge to watch, wait and continue to juggle family time. Hoping David ends his food strike today! Love you all so much!♥️
I love the picture of the “big kids” napping. Visiting little brother is hard work … My prayers continue for you all to be held closely in God’s care.