Another Day, Another Test

We still haven't heard back about the blood sugar testing. I have been harassing the ped's nurse, but so far she just told me that Tucker is not in any danger. The ped has a call in to the Pediatric Endocrinologist to get some clarification on some of the enzyme tests, but he seems to be okay. I will not take that as good news until I hear the whole story, but for now I am okay. On Thursday afternoon my cousin Tyler graduated from high school. We are so proud of him! So on the way there, my phone rang...I was hoping it was the pediatrician, but it was the nurse for the pulmonologist. Tucker has been due for a sleep study since July, but the pulmonologist's office is always busy and running behind. The nurse said either we could come in the next night for a sleep study, or it would be over a month before they could fit us in. Tucker has a hard time with these studies, so they needed to have him in the sleep lab on a night when there were two lab techs available. So we scheduled a sleep test for the next night. I was a little wary of having so many tests in such a short time, poor Tucker had been through enough lately! But at the same time, I am very worried about his sleep at night, so I wanted to have this test ASAP. If Tucker isn't getting restful sleep (which he has always had a problem with), then that would make all of his cells work overtime during the day, and obviously that would not be ideal with his mitochondrial disorder. A few months ago I was dead set against him getting a CPAP mask to help him sleep at night, I felt like it was a step backwards. But now I would get it in a heartbeat if I knew he needed it so we can help him to get some good sleep. After I made the appointment, the freak-out started. Tucker HATES these sleep studies!! Last time we went, he cried so pitifully the entire night, barely got any sleep, and his results came back terrrible:( So then he got his tonsils and adenoids out to help, and we are hoping that worked. I told Tucker we had to go sleep at Dr. T's office, and they were going to hook up all that stuff to his head again. He was actually excited, he is so goofy sometimes! We packed our stuff (only one person is allowed to sleep over, so Chris didn't come), and headed out. When we got in the room Tucker turned off the light and said "night night." I told him we had to wait for the nurses to put all the stuff on his head. When they came in, he started crying:( It was so sad, he started crying for his Paw Paw! The lady told him she would call his Paw Paw to make him sit still, that way she could be done and out of his way. I didn't say anything, but I know that if Tucker's Paw Paw came in, he wouldn't be holding Tucker down, he would be kicking those ladies out! Haha:)So he cried and cried, but then as soon as they left the room he asked for "light off" and "night night." I brought him Cheetos and Chili Cheese Fritos, I asked him which one did he want? He just looked at me, so I said, "do you want both?" He answered, "yes." That is great because he usually just repeats the last word he hears, so when he anwers a different word we are very excited. So we started with the Cheetos. Look at this picture with all of the stuff he is hooked up to! Really the worst part about it is that Tucker pulls and rubs his hair to go to sleep. So the cap is in the way and he gets really frustrated when he tries to rub his hair. The lab tech remembered him from his last test, so she pulled some hair out of his cap at different spots! It looked pretty silly, but it helped!

He had belts around his chest and tummy, too, which he hated, but I told him he had a belt on like Daddy, and that seemed to work! Tucker is always trying to hook Chris's belts into his own pants, which obviously are too big. Sometimes we wrap Chris's belt around Tucker's tummy and tie it, it makes him so happy! So Tucker licked the cheese off of every Cheeto, minus the ones that I ate. He also watched a Kipper DVD on the laptop, I can not imagine how we would have gotten through the last 4 years and all of the tests without the laptop and DVDs!

So Tucker slept all night, it was so great. I am hoping that means he will get great results.

I have a feeling this is not our last sleep study. As we left at 5 am yesterday morning, the techs said "bye Tucker, see you later!" and I said "yes, hopefully much much later!"