Slow Going

Noah is getting better....very slowly. It seems like he gets better for a few hours and looks really bright and alert and is breathing easy, and then a few hours later he goes downhill and his sats drop again and he's not as comfortable. Yesterday we got him out of bed and up in his wheelchair for a couple of hours which really helped his chest a lot.

He got tired after a while though, so we put him back into bed. Yesterday they did another Xray using a portable Xray machine which they brought to his room. Today one of the doctors said that it looks like the infection is clearing but because Noah has fluid all over his body with all the swelling going on, he also has fluid on his lungs which is why his chest doesn't seem to be much better yet. She said once the fluid starts going everywhere, it should also start clearing from his chest.

While he was up in his chair he had so many seizures in a row - probably around 15-20. He has never had that many before in a row...he was coming out of one, then going straight back into it again and it just kept going on and on. The Drs started to worry that he would end up in a state of status epilpticus, and after his second lot of cluster seizures they decided to give him a loading dose of IV epilim and also increase his daily dose of epilim up to 800 mg twice a day which is a lot more than he was having. Once the IV epilim kicked in he really calmed down and was quite drowsy. It settled the seizures down, but he still had a few in the night while he was sleeping.

His afternoon/evening nurse was great. He is a very funny guy and always comes in and calls Noah 'little dude' and tells him off for misbehaving. About 9.30 pm he popped his head around the door with this on!

He's very funny and was telling me how he was one of the 'clown doctors' (or clown nurse in his case!) and had a ceremony and all to get his nose. I told him he was going to scare all the kids, but luckily most of them were asleep, so we were the only ones he had to entertain for the night. This was his pose doing 'nursey things' for my photo.

Kobe spent the morning with me at the hospital today and has been so good. He is quite happy to just sit and chat and watch the Wiggles all morning.

He loves it when the nurses, Drs and physios come in and out. He loved imitating the physio giving Noah's 'percussion and vibes' to help clear his chest and kept saying 'bang, bang!' and she was tapping on Noah's chest.

When Noah was settled, we ducked into the playroom for a quick play to break up the morning.

I wish they had the playground years ago when we were in and out of hospital a lot when Harri was little. It's nice to know that the boys now have somewhere fun to play when Noah is in.


It's been over a week now since we've been in and the days are starting to roll into one. I'm having to ask what day it is as I try to work out what the boys should be doing at school etc. It's been nice having lots of visitors drop in. This one obviously has his serious doctor face on :)

I'm glad we have a nice room (even though it's very cramped) where we can look outside to the courtyard. I didn't get out of the hospital at all on Monday and had no clue what the weather was even like, but it was nice to watch the rain come down this morning.