There was a slight change of plans today for MRI day. They didn’t have an appointment time available where both Dr. Park and Dr. Abicoff could meet with us this afternoon after the MRI, so we will be going back to the hospital tomorrow morning for the results of the MRI. Not ideal, while we sit on pins and needles wondering what the MRI will show, however there weren’t really any other options. Alex was able to go with me today, he turned his sleep schedule around so that he could, which I really appreciate.
The last few days with her on this higher dose of steroid have been so draining and hard. Madeleine has been very fussy and not sleeping well. Two nights ago, I finally gave up and called the Dr on call after she screamed for an hour and wouldn’t sleep in the middle of the night. Eventually the only thing that worked to calm her down and get her to sleep was cuddling with me in our bed. We dozed on and off that way for a couple of hours until she was calm enough to sleep again in her crib. Mommy doesn’t sleep well at all with the baby in our bed, and since she was calm, she went back down.
One nasty side effect of this steroid is fussiness, but another is sleep troubles. Poor baby is so darn tired that she falls asleep briefly when I lay her down on her changing table. I will be so glad when we can get her off of this steroid for good. With that thought in mind, I am very anxious to find out the results of her MRI from today, because if the tumor is shrinking, we can start stepping down the steroid again. Fingers crossed for that!
Last night was a bit better, but she was up at 5 am and wouldn’t go back to bed until about 6:30. Poor girl. We couldn’t feed her any solids after 4:30 this morning and couldn’t feed her any breast milk after 6:30, so when she woke at 5 and wanted more milk than I had, we just had to try to calm her while more milk was produced by yours truly.
Needless to say, she was a very upset girl this morning while we waited at the hospital for her MRI, and she is so tired, she actually fell asleep on my chest. For those of you who know her, you know how unlike her this is. I can only imagine perhaps her red blood cell counts have dropped and that may explain her super sleepiness. We just tried to keep her as calm as we could and she kept falling asleep, waking up, crying, repeat. It was truly heartbreaking to watch. 😦
We finally got called back (over half an hour late) at around 10:20 and waited while they took her vitals, took down information about her, etc etc. The anesthesiologist came in and spoke to us and became concerned about anesthesia, given where her tumor is. She was concerned about pressure from the tumor on her trachea – so she ordered an x-ray to make sure that this was not a problem. It wasn’t, so finally at noon – her scan was scheduled for 11am – she was taken back to go to sleep and have her scan done. We got to stand with her while she fell asleep and then went to the cafeteria for a little bite of lunch.
We were there in the recovery room waiting when they brought her back (crying) from anesthesia. She woke up fast and was ready to eat! After some breast milk, some solids and a happier baby all around, we headed home. Baby girl passed out in the car and slept even more after we got home. She’s still not sleeping superbly, but is better than a couple of nights ago.
In good news about her legs, she is moving them more again. Her right leg is straightening pretty regularly and her left leg she sort of tries to rotate up. And yesterday when I was getting ready to feed her, she pulled her leg up as she struggled to get to the milk source (ie. ME!). Seeing that she is capable of it if she wants it made me feel very encouraged, but I am trying not to get my hopes up too high. This morning (or was it yesterday? My internal clock is so screwed up) she was much more apt to roll over and was showing quite a bit more movement, including rolling over, even with her leg braces on! 😀 Good girl!!
I’ll update tomorrow after we hear about the MRI results and have an action plan. We also had blood work done today, so we should have the results of that tomorrow as well.