The other day, I once again, felt that kick in the gut.
In the military, there is a program called the exceptional family member program, or the EFMP. The purpose of the program is to make sure that the base you are stationed at has sufficient medical facilities, or educational programs, for every member of your family.
So, for example, Zachy and Natalie are enrolled in the program. When we go to move, a red flag will go up in Matt's file saying we have special needs. The base we go to will have to be able to accommodate their needs, or we can't go to that base.
Since we are getting ready to move (PCS, permanently change stations), we have to update all their EFMP paperwork.
The paperwork requires letters from their doctor, stating what exactly, they need. Since we are PCSing, the doctor also gave us a copy of their records.
Since I always feel the need to read every report I'm ever given, I decided to read this one too.
I read through Zachy's. His diagnoses were, TAPVR, Sick Sinus Syndrome, and pacemaker present. Yep, all pretty straight forward.
I then went to Natalie's. Her diagnoses read TAPVR, and Pulmonary Vein Stenosis.
It also goes on to state that there is a chance, although slight, that she will need another surgery to correct the stenosis.
So here's where I felt the kick in the gut....we have always said, in passing, that one of her veins might be slightly narrow, but I never thought it was something that would be a diagnosis. I never really thought she would need another surgery. And, she probably won't. But the fact that it was written in her records, it just makes it that much more real.
I'm sure her nurse from the NICU, Jeremy, would be telling me she is doing everything that is expected. He was always good at telling me that. Still, even if it is to be expected, I just never expected to see it in print.
Stenosis is not something we ever dealt with with Zachy. And we know it is the main complication of TAPVR after repair. It's just not supposed to happen to us. She is supposed to have one diagnosis..not two diagnoses.
I know everything will be just fine, it was just another one of those times that took my breath right out of me.
2 comments:
I can understand the 'ouch' of reading it (((hugs)))
Isn't it funny how something that can be there all along has such an impact when we become aware of it for the first time.
I pray it's a complication that you never have to deal with!
I have to say that the EFMP sounds pretty impressive! That is awesome to know the support is there from the get go!
That's nice that the military is considerate of family needs. Interesting program.
I know it's not pleasant when the "what if" possibilities get brought to mind again. Consider it another faith building opportunity in returning it to Jesus.
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