More Tests, No Answers

The Tiny Girl Medical Mystery Update:  Today is day two at the hospital with my daughter.   She was admitted after an evaluation under anesthesia to discover what was happening to cause her vision to suddenly and rapidly deteriorate.   At the end of the day, we still don’t have an answer as to the cause.

My daughter has had a head MRI, neck MRI, both with and without contrast and an angiogram added into the mix to look at vasculation.   She had an echocardiogram to check the structures of her heart and some chest X-rays to look at some things that wouldn’t be visible on the echocardiogram.   Blood was drawn yesterday and some tests were run but today more blood was drawn twice to run more tests.

She has been seen by teams from dermatology,  rheumatology and ophthalmology and genetics as well as by a collection of people from the ranks of medical student, resident, fellow, and chief resident.

Things have been ruled our, or marked as “highly unlikely” and new avenues are being considered.  Doctors across disciplines have been working together, to try and discover why my daughter’s eyes have two detached retinas and reduced blood flow.

Connections have been considered and looked into, although sometimes those connections are very tangential and weak.   Not unlike the same way you would say, “I like Mars Bars; maybe I’m from Mars?”   Then, after some cursory investigation, you discover humans have never lived on Mars and decide, “well, it didn’t make sense anyhow.”    There have been a lot of those types of ideas floating around.

The number of ideas, conditions, diseases, and defects considered and looked into has been impressive.   Everyone has our daughter on their minds and everyone wants to help find an answer so we can begin to treat her appropriately.

At the end of the day today Rheumatology was able to see her.   The lead doctor had come by three times and had waited until she returned before going home.  We have a plan change as of this evening as a result: intravenous high-dose steroids.    This is a preferred course of action but the decision was to hold off for some tests to ensure the results weren’t misleading as a result.

Tomorrow (and what will likely be three more days in the hospital) will see some more tests, although most of the main work has been done.   The reason for the extended stay is for the steroids.

As of now, we have some preliminary findings that are good:
- MRI’s are fine (no neck or head issues causing restriction of blood to the eyes, such as a clot)
- Angiogram is fine (would show blood flow issues)
- Echocardiogram is good (would show heart defects)

One other point to bring up that I had clarified to me today is the type of retinal detachment my daughter has.  It’s termed “serrous retinal detachment” which means the retinas didn’t tear away from the eye.   The serrous fluid builds up between the retinal layer and the layer below.  So her retina isn’t torn, which is good.   Hopefully it will reconnect when the underlying cause is addressed.

And one other thing: I didn’t know how many readers I had.   I think it says I have two subscribers, but it would appear I have more than the three of you out there I imagine when I write these posts.    Thanks for the messages and support.   We still are steadfast in our belief that this is something that isn’t permanent.

The Big Boy Update:  My son missed my daughter.  Not only that, he was worried about her.   He hugged her and was nice to her and was such a model child when he came to visit her tonight.  It made me smile just watching him.