We, including Ryleigh, have met with her team of doctors and nurses. She had 7 medical professionals with her today to share what they know so far. The neurologist first spent about 20 minutes explaining to us (without Ryleigh)what has happened in her brain based on the 2 MRI’s she has had. He asked us if Ryleigh would want a similar explanation. Yes, of course.
I was so impressed by the manner in which he explained her MRI. Ryleigh was so focused and strong. She did not cry or get mad, she asked questions and then shared that she was scared.
Here is what they have told us and what is going to happen next:
Ryleigh’s first MRI showed some sort of lesion. They needed to do the second MRi to find out what it could be. Yesterday they thought the first MRi was evidence of a stroke but after the second MRI and consultation with the neurological radiologist they have determined that she has a type of inflammation on the mid to top part of the brain stem. They are confident that it cannot be a tumor which is a relief,
However they are not sure what it is, inflammation like this can be a variety of things such as infections, auto immune issues, or a cancer of some sort. The intriguing part is that the type of inflammation they think it is should not of happened or would have reduced the inflammation because she is on the exact medication she has been on for her Crohn’s disease. She has also not had a fever, vomiting, or other typical systems.
The next steps include:
A lumber puncture (spinal tap) to test for a wide variety of infections, check the spinal fluid for abnormalities.
Consult with other teams: hematology and cardiology.
She could get her lumber puncture tomorrow and if not for sure on Monday. Right now she is stable so they feel they can wait as it is the weekend. If she starts to show significant changes they will do it earlier. Right now she has the paralysis on the right side do her face, numbness and a heavy feeling in her left leg, chewing and swallowing issues, as well as some limited use of her right arm/hand and dizziness. She is a little confused especially when people are talking to her as she has a hard time figuring out what they are saying. Ryleigh is pretty well bedridden. She finds walking difficult and tiring. Her longest walk is about two meter and that is with assistance.
You can imagine how challenging it is to see our bubbly Ryleigh be so different. As a family we area trying to be positive.
It is a puzzle right now and we will have to wait for more results and information.
We are keeping an eye on her for any changes. She is in fairly good spirits and we try to distract her and help make the day go by faster.
Thanks for all the positive words, messages, and prayers. We appreciate it!
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