Sunday, April 20, 2014

The long and picture filled version

Wednesday morning we woke up and went to Brian's regular Endocrinology appointment. Everything went well and all levels are good. (For the record when I say that levels or tests look good or are excellent it is always with the understood "for what Brian has going on". He has not had a "normal- what every other kid would look like" test result since he was two.) We left from the hospital here and headed straight to Houston, TX. The first night of our trip we stayed in Fred's parent's camper at an RV park in Houston. They live in NM, but went to Houston a few days before we did and helped out with the other kids on this trip. The older three where excited to swim in the pool before dinner. Miss Olivia was saddened that she couldn't participate and was reminded how much she hates her cast.

looking forward to swimming at Grandpa and Grandma's RV park 

sitting on the bottom of the hot tub
Thursday morning I woke Brian up at 5:30 AM and fed him breakfast as he was NPO from 6:00 AM onward. He went back to sleep after eating and everyone got up and we got our day moving around 6:45 AM. After a morning of playing in the camper and the exercise room at the RV park, we headed to Texas Children's. Brian was checked in for his MRI with sedation at 11:45 AM. We were called back fairly quickly, but just to sit for hours. We believe that someone was bumped ahead of Brian. Around 2:00 ish we were being moved to a different floor where they would actually do the MRI. That meant the waiting room near recovery for the MRI was in a different building then where we had started our day. Fred went in search of his parents and our other three kids in the cafeteria where they where eating lunch. They didn't know about the change and where they were currently located was closer to where we would end up. Fred wanted to catch them before they walked back to the other building where we had started our morning. He grabbed some lunch for himself and as he was doing that I called him to rush them along saying that things were happening quicker than we had thought. Fred bagged up his lunch and quick grabbed something for me and headed to the MRI waiting area. They anticipated that I would walk out within minutes saying Brian's procedure had started. It was well over an hour an a half later. Poor Brian fought getting his IV and kicked and cried, resisting the entire process. It took three of us to hold him down. Then every five to ten minutes someone would come in like "this is it" only to have something delay the process. (Apparently they draw the meds for each specific patient earlier in the day. When it was Brian's turn, one of the delays was that his propofol had expired by 45 minutes so a new syringe had to be drawn.) Brian was so worked up he fell asleep in my lap. Finally everything fell into place and he was put to sleep with propofol and I went out to the waiting room with the rest of my family only to discover that Olivia had come down with a fever and wasn't feeling well. We decided that Fred and his Dad should head over to our hotel and get checked in so Olivia could rest. About 20 minutes after they left I was called back to recovery with Brian. He was Chatty Cathy and asking to see the pictures of his brain. The nurse was super sweet and asked if she could pull them up and show Brian. She was allowed to and he loved seeing his "creepy" brain.

Brian giving a robot an MRI or PET scan in the waiting room

getting checked in

really scared and not looking forward to what's about to happen

So worked up that he fell asleep in my lap.

Olivia not feeling well as we wait for Brian's MRI to be completed.

Brian's skin is so sensitive. This is from the EKG.(scar on B's right side of chest is from port removal)

 We got to the hotel not too long after Fred checked us in. We got our stuff set down and Fred, his parents and Ansley left to get dinner to bring back as it was past 5:30 PM by this point. While Olivia, Brian, William and I were resting we got a knock on the door. Room service delivered some treats for Olivia with a sweet card saying they hoped she felt better soon. (We stay at the Marriott because it is across the street from Texas Children's. It is SO convenient. We get a medical discount rate and we assume they saw Olivia's cast + she obviously didn't feel well at check in and put that all together assuming we were there for her. She got something special from the staff each day we were there.) While the man was in setting down the complementary tray he let me know that if we are interested in room service any time during our stay that they have several options and a 20% fee is charged, but feel free to tip above that. Brian looks at the man and asks, "Do you have cheese pizza?" The man replied with a smile and a "yes" while looking my way. I was so tired and I knew there wasn't a pizza place within walking distance and that Fred was most likely coming back with Chinese food that Brian doesn't really eat anyway. I said sure, get the boy his pizza inwardly thinking that Fred's going kill me when he hears that I just let Brian order a pizza that is going to cost us $50! It didn't cost that much, but it made Fred and I chuckled that our seven year old now likes to say that he prefers the Marriott and likes room service.
   After dinner Fred's parents went back to their RV park and we crashed for the night. We tried to fall asleep instantly but Brian was mister giggles and said he couldn't quiet down because, and I quote, "this is my time to giggle and be silly since I didn't get to the rest of the day!"
   Friday morning we headed straight over to Texas Children's and Brian's appointment with Dr. McClain. The movie Frozen was playing in the waiting room and a child life specialist was doing an Easter craft with the kids. We had a wonderful appointment with Dr. McClain. I still love the man and couldn't find a single thing to complain about. He takes time to listen to us and Brian and never acts rushed or distracted. Brian was telling Dr. McClain about the pictures of his brain and Dr. McClain offered to pull them up again so Brian could take another look. Brian really appreciated it. He likes looking at his insides.
making an Easter craft

the cheerful waiting room

Dr. McClain showing Brian his MRI of the brain.

 I will finish my "journal" of our trip later, but for now here are the pictures...

checking out the PET scan machine

just chillin'

getting scared and not looking forward to propofol

Wyneth, our wonderful recovery nurse two days in a row.

Happy to be throwing away the oral chemo pills!!

Happy Easter ~ HE is Risen!

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