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Saturday, December 10, 2011

Caleb's Muscle Biopsy

I really have been trying to make some time to update everyone on how Caleb's surgery went on Tuesday! Geez life is busy! Anyway...
We had to be at the hospital at 6am (sheesh!) to check in. The surgery was scheduled for 7:30 and it was right on time. (love early morning appointments and surgeons that are on time!!) we checked in at admissions, where they asked us to pay the $12,500 that insurance wasn't covering (haha) so we wrote them a check for $50 and went on our way over to surgery. We went to a pre op room where we changed Caleb into the hospital clothes, they checked his weight and temperature, and then everyone came in to talk to us. The surgeon, the nurse, the anesthesiologist, the other nurse, geez! Then they gave him some stuff by mouth to make him a little loopy. After that was good and kicked in we walked with the nurse while she wheeled his bed to "the doors" and we said our good byes.
At this point we went back down to admitting to see if we were eligible for a discount on the hospital portion. (I have no idea what the surgeon, anesthesiologist, and lab fees will be but insurance won't be paying any of that) thankfully they said we could get a 60% discount once we got all our paperwork in. (still working on that) so we grabbed a quick bite to eat, we hadn't eaten yet since Caleb couldn't eat we didn't want to dangle that in front of him! Then we went back up to the waiting room. It was close to 8:30 which is when we were expecting them to be done. They called us back pretty quickly and the surgeon came in and said everything went great. Then we went back to the waiting room. When he started to wake up they came and got us to be with him. We came up to his bed where he was under some blankets lying face down and as soon as he saw us he started to get up and move towards us.(this was the part after his MRI that was the worst, the waking up. He was very inconsolable and agitated. It took almost 30 min to calm him down last time so I wasn't really looking forward to it) I picked him up and tried to keep all the tubes untangled. He had an IV, 2 monitors on his chest, one on his toe, and a blood pressure cuff, and the incision!  Once I got him on my lap I started reading him a book and he calmed down and was great the rest of the time!! It was so awesome! (although he wasn't a big fan of the IV and when the cuff would take his blood pressure he didn't really care for that either, but not too bad) They brought in a DVD player and he watched some movies as we waited out our 2 hours. He drank some apple juice and just sat in our laps. Around 10:45 they started taking the monitors off and getting us ready to go. Caleb was a little sleepy but otherwise acting normal. We picked up 2 balloons on the way out (sissy got the pink one) and away we went.
"what is this thing?"
They gave us some Tylenol mixed with pain meds and he took that twice that night and once during the night but then switched to regular Tylenol. By the next night he was off any meds and acting like nothing happened! He was crawling around and even standing on it. I took off the outer bandage last night and the other part comes off Tuesday.
We won't get results for 4-6 weeks but the hard part is over (for now!) the results will hopefully tell us what 'kind' of Mito he has. Meaning where the breakdown in the mitochondria is exactly. Sometimes they can taylor the vitamins or diet to help out if they can find that.
We were supposed to start the vitamins after the surgery, but we went to Scottish Rite on Monday and we are going to do 1 more round of blood and urine and Caleb has to be fasting and off the vitamins. Sooo, next Monday we are taking him in for those two things and then that afternoon we can start them.

Playing with his balloon on the way home
How it looks now
Overall the whole thing was super easy. (not fun but easy) Thank you to everyone who was praying for us during the procedure and for all your texts and facebook messages.  I seriously don't know how we would get through this without our faith in God and our family and friends.  Thank you so much!!

Love,