The all important eye examine happened today. Liisa called about 9:00am (Rach's appointment was at 8:00am) and the results were not what I was expecting. "The doctor completed the examination and didn't see any problems in the retina." Ugh!
It is such a contradiction, as a parent, to be disappointed that there were no problems, especially when the matter concerns the eyes. All the doctor said was she might need a stronger prescription. With Rach amped up from steroids, it's hard to get her to settle down enough for a good and complete exam for new glasses. Liisa figured they would return later.
Mentally I went back to square one, malignant MS. My faith has been strong that Rach is going to get better. I really don't understand it, I just know it, I believe it, that she will get better. Hope is a great thing.
Liisa called about an hour later. I figured she was back at the hospital with Rachael and was settling in for the day of therapies. While Liisa was with the eye doctor, she wondered why they hadn't taken "pictures of her retina". She had to explain what they were looking for and the doctor had never heard of Susac's syndrome. He called the neurologist and found that they wanted an exam that would consist of a series of pictures while dye was being injected to see if any blood vessels around the retina had been occluded.
Once the new exam started the dye flowed freely... then suddenly stopped in one branch of vessels. Liisa said it was clear, it was flowing along, then just stopped.
It's definitive, with the involvement of the retinal blood vessels, it is Susac's syndrome. I'm not sure of the official count of Susac's patients but I think that Rach is case number 202 in the world since this disease was diagnosed in 1975.
What does having Susac's mean? What happens now? Where do we go from here? First, Rach will be getting very aggressive treatments. She will be coming home Monday, possibly Tuesday. They are doing this to protect Rach from exposure to the "nasty infections" in the hospital while her immune system is suppressed. Beyond that, I have not a clue. I'll keep you abreast while on this crazy roller coaster ride.
4 comments:
I never thought I would pray for a disease process for anyone. But, in this case all I can say is Waaaa-Who! From all of our lips to God's ears. Now, let the healing begin. It is going to be a long haul for her. She has our love and our prayers forever.
We will continue to praise God in the Highest! He has his hand in Rach's life! She will get through it all!
It's nice to know for sure now!
Great news, and good to know for sure what you're dealing with. Let the healing begin.
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