Thursday Update on Sam in hospital

Hi everyone, thanks again for your notes and calls. We're hanging in there, pretty sleep-deprived, but ok. We're learning how to convince the medical staff to coordinate their schedules so they can do their exams/treatments back to back (ie torture Sam for an hour straight) and then let him actually sleep for a few hours a a time. Last night they kept coming in and waking him up every 30-45 minutes. This morning he was very overtired and agitated from being woken up - and when he is agitated, he struggles to breathe. So, we've had a discussion with everyone and hope to coordinate things a bit more - right now we have a 2.5 hour window of no treatments/exams and are hoping he'll be able to sleep for a while now. Brad and I are sleeping overnight in the hospital with him and basically not leaving his side.

We had a very informative meeting with the pediatric pulmonologist who was quite helpful. They're going to do some tests to try to get a better handle on what has caused this (especially since it came on so suddenly) and how we can prevent this from happening again. We will definitely be in the hospital until tomorrow, most likely until Saturday or Sunday.

The good news is that they've taken him off the IV and just have the IV in his arm for medications. We hope to possibly remove the IV from his arm this afternoon. The high-flow oxygen has also been lowered. Originally we were at 100% oxygen at 10 liters. Now we're down to 35% oxygen at 3.5 liters. The goal is to be at 21% oxygen (room air).

The dosage of the albuterol breathing treatment has also been cut in 1/2 and is being given every 3 hours which we are quite happy about - the albuterol has made him hyper and then he crashes afterwards. But, during his hyper silly times, we are enjoying his playful search-and-destroy personality. He loves to throw things out of the crib and we played with golf balls for a long time on the floor.

He is still hooked up to 5 monitors and other cords which significantly limits his mobility which frustrates him. But, he's eating more (he devoured 1/2 a pancake and a big cup of applesauce this morning) and seems more alert. He continues to wheeze and use his chest/back/neck muscles to breathe, much more than we'd like.

Thanks again for all of your notes, it means so much to us to hear your words of encouragement and support.