Tuesday, January 14, 2014

I'm just tired.

I think the most difficult thing to do is sit by and watch. I had to sit by and watch as they drew blood from Jeremy yesterday for a Complete Blood Count. I've had to sit by and watch, and have spent so many hours... days... in hospitals that the mention of an appointment anywhere just drains me. But nothing, not even open heart surgery 2 months ago, has been as draining as listening to a Doctor call us at night... late too... to tell us his white blood cell count was low, and his platelet count was low. Low enough that a reorder of labs was needed for the following day to double check their work. Nothing is more draining than sitting by and waiting for the unknown.

I know it may not seem like a big deal, but this lab work has been a huge deal. A dreaded deal. Ever since I found out Jeremy had Down syndrome, and I read whatever I could get my hands on, I knew this blood work would eventually happen. At 6 months it didn't... but now he hasn't gained any weight... not ONE single pound since October. There's no explanation for it, he eats like a horse, he's had the heart surgery which should have enabled weight gain... yet nothing is happening. Its also possible its a thyroid problem. There are just too many unknowns... and its so tiring. Its so incredibly hard to sit and watch your baby, that is near impossible to draw blood from, cry because the only location they can easily get is his head. Or cry because they have to tie the tourniquet around his arm so tight just to make a vein, any vein, pop. Every time lab work is mentioned I get that terrible pit in my stomach... I know its going to be at least an hour long, I know its going to be painful for Jeremy, and I fear I'm going to hear something I don't want.

I feel like we haven't had a single break. We've been on the run with a hospital, a specialist, a therapist in our back pocket. Luckily he makes faces like these... and then its not so bad