All of Ally’s labs came back good and she had a good Wednesday night at the hospital, so we got to come home today as planned. HOME SWEET HOME!!!!
Unfortunately, right as we were getting ready to leave the hospital, I first got in a BIG argument with the valet guy while I needed to park and load Ally and her things up in our handicap van. Then, Ally threw up 2 times. Her tummy is really upset and she has off and on been fussy. She slept peacefully the ride home and then threw up again soon after getting home. She also had a low grade temp of about 100 this evening, but it is back down. These are very common side effects of her pamidronate infusions (for the first couple of rounds and then usually go away). I’m not sure if it will last a day or much more. It just makes me a little nervous since the symptoms didn’t start till we were discharged and they are the same signs of the flu. We are rotating tylenol and motrin, and also giving zofran to help her tummy. Plus, we slowed her feeds. I’m really, really hoping its just a reaction to her infusion (which she had some small issues last October after her first infusion).
Luckily, we had home nurse, Anna, who helped out a ton this evening with Ally from the second we pulled up home (4pm) till a little past Ally fell asleep. She did two breathing treatments to hopefully clear Ally out in case she aspirated any vomit and got her all comfy in her bedroom. This allowed me some time to slow down, catch up on some personal things, eat my first meal of the day, and try to prepare mentally for tomorrow’s school meeting.
Hopefully Ally will have a restful night, but I’ll be up here and there checking on her. The school meeting is at 9 am and luckily we have a great home nurse, Josie, to take care of Ally so I can attend. Hoping we can begin to make some progress in getting Ally a great new school, consistent home school with therapies when she can’t attend and more….. It will probably take more than one meeting, but I’m super lucky to have lawyers advocating for Ally with me!!!
I’m off to bed to rest a little.
Hope everyone has a good end of your week and a nice weekend!!!!
Tina
Angel Ally Blog - SMA Type 1 
So much!!! I hope it’s not the flu. I hope you have help tonight and are able to get some rest. Ooooh, I’ll be thinking good thoughts for you tomorrow! Update somewhere tomorrow, ‘k?
huggies to you and your gal ❤
Glad to hear everything is going good. Praying that she feels better and does not throw up anymore… Praying for you to have a good visit with the school and your lawyers …..
Thinking of you! I’ve been a bit out of the loop but just caught up on your last few posts. We are sending good thoughts to Ally and your family. Good luck with the school!