Unexpected Trip

So when I titled the last post "Busy Week," I must have had a psychic moment:) We had several appointments lined up this week, but yesterday we made an unexpected trip to Houston. We had an appointment with the mito doc in March. At this appointment we discussed scheduling a muscle biopsy and lumbar puncture. We thought it would be several months before they put him on the schedule, since they only perform a few per month. So I got a call yesterday from Dr K's nurse, telling us Tucker could be on the biopsy schedule for May 21st, the only catch was that we had to be in Houston the next afternoon to meet the surgeon for a pre-op appointment. I had to decide right then, so I said "ummm...we'll be there!" then I called Chris and told him to come home early and take Thursday off because we were headed to Houston. We packed up and headed to Aunt Kim's in Lake Charles first. Tucker does very well on car trips, but around the 2 hour mark he gets a little crazy! Luckily Aunt Kim, Uncle David, Morgan, and Grace live about 2 1/2 hours away, so we have stopped there on every Houston trip so far. Tucker knew we were going there, but around Siegen lane we realized we forgot his feeding supplies. These are not something you can just pick up at Wal Mart, so we had to turn around to get them from home. He screamed and pulled his hair on the way home, even though we promised him we would turn right around after we got his stuff! Once we pulled out of the driveway, he was grinning like a JackOLantern, saying "Gogan", which we consider a combination of Grace and Morgan! We had fun with them, as usual. Chris and I jumped on the trampoline with Tucker and Morgan while Grace had baseball practice. Grace came home and was so excited to play with my new IPhone....until she realized I was so lame, and I have no apps or music! I only use it to call, text, and check facebook, so it was no fun to her at all. This morning we left Lake Charles and made it to Houston pretty quickly. I have only been to Memorial Hermann twice, but I knew much more about it than Chris, so I showed him all around before the appointment. Tucker had an appointment with the pediatric surgeon who will be performing the muscle biopsy. The doctor wanted to meet Tucker to go over his case, and today was his only free day before May 21st. We showed up early for the appointment, just in case, then we waited over an hour to see the doctor. It was a very crowded room, and the little kids were kind of stir crazy! Some of the highlights included: Tucker rubbing some strange woman's leg before I could catch him (he LOVES legs), Tucker trying to turn the lights off 500 times, then screaming "light op!" when I blocked him, and Tucker and a little girl trying to dig old crackers out of the trash can with the whole room telling them "no!" Tucker spent about 20 minutes listening to Mickey on Chris's Iphone with headphones, but we could not pull out our secret weapon (the laptop with the Mickey DVD) because the kids would have swarmed all over it! So the actual appointment lasted only about 15 minutes. The resident explained the procedure to us. They will make a 1-2 inch incision, then cut out three pieces of muscle from Tuck's thigh muscle. They will put each piece on a slide, and two slides get sent for different tests, and the third slide gets saved for future testing. Mitochondrial disorder is a new field of study, and there may be new tests available later that don't exist now. So once they send the tissue out, their part is done, and we wait for 6-8 weeks for the results. The neurologists will also perform a lumbar puncture at this time to test Tuck's spinal fluid for many things as well. Tucker will be asleep for all of this, so he will not feel any pain. Once he wakes up he will have pain medicine, and we should go home the next day. Because of all of Tucker's past issues, and his possible mito diagnosis, the anesthesiologists want to meet Tucker before the surgery. So we will be up at the hospital a day early to meet with them. At Memorial Hermann, they use different anesthesia protocol for kids with mito to make them safer while asleep. So even though Tucker has been put to sleep many times, this will be a new experience for Tucker and us. For the last two trips to Houston, Mom and Gina have rode with us. We all had fun on the road trips, and they are a great help to me. This trip was also very nice, I enjoyed spending time with Tucker and Chris, and letting Chris spend a little time in my medical day-to-day world! After waiting for the doctor for an hour, Chris said he would rather my mom come with me next time, not him! We often joke about how Chris has the "easy" job since he spends 40 hours each week at work while I am at home and on-the-go with Tuck. I think after this trip he appreciates his job even more. One random story to end the post..... For those who don't know how Tucker got his name-When we found out I was pregnant, Chris said the baby would be a boy, and his name would be Tucker. I laughed, and I asked "what if it's a girl?" He said it was definitely a boy, but if it was a girl, I could pick the name. But I didn't get any say if it was a boy, his name would be Tucker. Once he was born, I made nametags and decorations with Tucker's name and put them all over his NICU room. He had tons of monogrammed blankets and keepsakes, letting the whole world know this kid was Tucker Ray! Tucker has had strangers in his life since day one, so we are always introducing him to people. So many people have told us what a great name "Tucker Townsend" is, how it sounds like a baseball name, or a famous name. When the resident walked in today, he said, "Tucker Townsend-that's a great name!" and he said it a few more times. Chris looked at me, as if to say, "Yes, I am amazing." So tomorrow Tucker is going back to school (which he loves!), and then we are all going to the eye doctor. This is never fun, so we will see how amazing we all feel by tomorrow evening!