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Thursday, November 29, 2012

Ohio Day 5 and 6

Day 5 Wednesday
We spent the day in the hotel room letting Jack rest ALL DAY. I gave him his breathing treatments, cpt therapies with the vest and suction. He took three naps and was happy each time he woke up. Mom left to get food for lunch and dinner.  Nothing exciting happened and I almost lost my mind being cooped up in the little hotel room. I stayed busy taking care of Jack. If it wasn't for getting out of the room and going one floor up to do laundry I think I would have. Being in this hotel room is soooo very different   than being at home. At home there is always something that needs to be done like dishes, laundry, bills, insurance paperwork, cleaning, cleaning and more cleaning and take care of Jack. The hotel room is straightened and laundry is done. There are not any dishes because we are eating take out. Jack is resting and I've seen every NCIS and Duck Dynasty on TV. If I have another day like this one, I will write more. LOL

Day 6 Thursday
We spent the morning getting ready to leave the hotel room for Jack's appointments today. It is always a  huge task getting Jack ready to go any where. His bag has to be packed with diapers, pads, wipes, formula, water, meds, syringes and extensions. His bag should have everything he needs to survive while away from home. We got to the hospital and it was like a maze getting around. It reminded me a lot of the way LeBonheur used to be before the new hospital except it was labeled better. the PT evaluation went well. We only had to do the first part that concerned rolling, trunk strength and head control. The second part was about balance and walking which Jack can't do. It really didn't last long at all. While we have been in Ohio Jack's O2 tank decided to leak. I went looking for his extra O rings that typically are the culprit when the tank leaks and couldn't find them. I asked the PT for help with the  leaking tank. She went to Respiratory dept. and got someone to come back to PT to help me. James, the man that came was pushing 100yrs old but was extremely knowledgeable and helpful. He fixed Jack's tank for us. While we were waiting on the O2 repair. The PT told us that Jack is the second child enrolled in the study at Akron. I think not so many have been enrolled because things for the study are just getting up and going in Akron. I think there are a lot of behind the scenes arrangement going on between hospital, Drug company and FDA. We also forgot to pack Jack's bath chair. It has been difficult giving him baths. I will not forget on our next trip!  Jack's next apt was way across the hospital in the Heart Center.  Jack got an EKG. It didn't take long at all. We found our way back through the massive maze that is Akron Children's Hospital to the garage. On our way back to the hotel we stopped at Target. I bought some supplies to organize Jack's medical records better. The medical record notebook I keep for Jackson came in very handy with our visit with Dr. Cohen on Monday. Organizing it will also keep me busy! We got dinner and went back to the hotel. I got Jack settled and he went to sleep. Mom and I ate dinner and now I am typing to all of you! Have a good night! Thank you all for your prayers!

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