Tuesday, March 29, 2011

Not What I Expected

I am not my typical quippy self tonight. It has been a long day, but I know a few of you guys would like some real information so here goes...

Will and Caroline had appointments with Dr. T today.

Will's appointment was fairly routine. His reflexes have slowed, which is actually a good sign that the brain stem is no longer compressed. The bad news is that while the surgery was necessary, it really did not alleviate any of his daily symptoms. He is still fighting the infection in his toe, so tomorrow I get to make an appointment with a surgeon who will need to try something more aggressive, including the possibility of in office surgery and IV antibiotics.

Now for Caroline...The short answer is that yes, she likely has mito. Having seen her last set of labs and the similarities between hers and Will's, I basically knew that was going to be the case. However, the question that remains is do we have to go to Atlanta for testing or can we run some extensive labs that will be compared to Will's that will allow a clinical diagnosis. The insurance company may balk at paying for supplements or treatments if she doesn't have the muscle biopsy, but Dr. T is going to talk with Dr. S in Atlanta to see if he will provide insight.

Dr. T also highly recommended that we revisit Dr. Sharps for Caroline's shoulder that basically dislocates on command. She spent 9 months in physical therapy for the shoulder last year, so we may be facing surgery there.

The most difficult piece of news was that Caroline's lower extremity reflexes are lightning fast while her upper extremity reflexes are normal. While I expected the mito diagnosis, I was totally blindsided by the ordering of the MRI to diagnose a likely brain stem compression.

Regarding Caroline, I knew the Ehlers-Danlos existed, suspected the GI issues, and was certain of the mito. But I figured that we would wait and pray that there was no Chiari issue. No Chiari issue meant no brain stem issue and hopefully a much slower progression of the disease process. The news that Dr. T expects there to be a basilar invagination totally shocked me. If indeed this is true, then Caroline will be headed for the same surgeries as Will has had and may/may not have a similar progression.

Billy is quick to remind me that no one knows anything for certain, and that God is in control of all of this. I recognize that. But the thought that she may have to undergo the same surgeries and some of the same struggles as Will just crushed me this afternoon. To watch one child struggle is insanely difficult. But to be told that a second child will likely head down the same path was totally overwhelming to me. The emotional, physical, financial side of all of this is mind boggling to me. How do we survive a second?

Is this a certainty? No. The MRI is still being scheduled. But I have not known Dr. T to ever be wrong. And when she looked at me and said, "I know one has been incredibly hard. I have no clue how you will manage two." totally rocked my little world.

3 comments:

Rachel said...

I'm praying. I don't understand most of it (the what or the why), but God never needed my understanding to do His work. I'm praying for healing for Will and Caroline, joyful days for the other children, and peaceful rest for you.

Anonymous said...

I have no words. Only prayers. (And a washer and dryer.)

I love you!

Angie D.

jessi said...

Nancy, we'll be praying with you.
love, jessi