Today has been a long and eventful day! It started with a 6 a.m. attempted blood draw. Followed by an 8 a.m. attempted blood draw. All in all, there were 4 sticks and lots of rooting around with the needles, and all to no avail. They will try again tomorrow :(
From there, things took a much more positive turn. Magnus got his chest tubes out, and then at morning rounds, the doctors decided to switch him off his last IV medication and said that he was ready to go up to the step-down unit! Woo-hoo!
Shortly after that, we had a visit from Magnus's school friend Vida and her parents. Magnus was not feeling too happy after all those pokes, so I was a little uncertain how he'd react to having a visit from a peer, but they greatly enjoyed playing with Magnus's new Peppa Pig figures together (speaking of which, these arrived from amazon.com without any note in the package...if you sent them to us, please let me know so I can thank you!)
Towards the end of Vida's visit, we got permission to go on a ride in a little car they have here in the hospital. The only other times Magnus had left his room since arriving here on June 9th were to go to the cath lab for his fluoroscopy study and then to have his plication surgery, and both those times they just wheeled him in his bed, so it wasn't much fun. We took a lap around the floor together.
After that, I left the hospital to take a shower, change clothes, and grab lunch, and by the time I got back, Magnus had been transferred out of the ICU. The downside of being out of the ICU is that the nurse to patient ratio is much lower so it can take a while to get help, but the upside is that we have a lot more freedom: we can eat and drink in the room! I can sleep in his room! We can have as many visitors as we want! And of course we are one step closer to home. The nurse practitioner came in to examine him and the first question I asked was what we needed to do to get out of the hospital. She said that the main concern was his oxygen levels. He's still on 2 liters of supplemental oxygen, and they want to wean him off that, obviously. Also, his oxygen levels when she came in to talk to us were in the low-to-mid eighties, and she said that she wants them in the high eighties/low nineties, which is actually what they are right at this moment, but they kind of trend up and down.
After we saw the N.P., we were given leave to go to the playroom for the first time! Magnus hadn't walked since before his first surgery (the physical therapy team had him standing, but not really walking, yesterday) but my mom and I figured that a trip to the playroom was a powerful motivator to get his legs going. We used the little car to get there, but made him take a few steps to get into the car, and then once we got to the playroom, he walked around a little bit again, and even stood to play at a rice table for a few minutes (he did then get tired and said he had to sit down). But overall lots of progress today!
6 months ago