1st trip to National Institute of Health DAY 3

Jacob's 1st trip to National Institute of Health


Day 3

Tuesday, December 1, 2009

I was so tired from not sleeping the night before and I had a very hard time waking up.

Today Jacob was to have a MRI of the brain, spine, and brachial plexus under anesthesia with and without contrast.

We were supposed to be at the Children’s Day Hospital at 7:00 am to get ready for Jacob’s 3 hour MRI under anesthesia, but we didn’t get there until 7:20 am. I’m not sure why I thought I would be able to get us all up and ready in only 20 minutes. Jacob couldn’t eat or drink so it only took 40 minutes, but regardless we were still late. The nurses didn’t seem phased at all that we were running behind and welcomed us right into our room. Jacob was a nervous wreck about having an IV placed and wondered how many times it would take them to get it right. (Sometimes at Shands it can take 3 or 4 times for them to get it in.) Jacob’s nurse got the IV in on the very 1st stick, on the very 1st try, quickly with very little pain!! They didn’t even use any numbing agents. Jacob and I were so happy that was over and went so well. Jacob changed into some very fabulous paper hospital pants and we walked from the Day Hospital to MRI Imaging. We only sat for a few minutes waiting for them to take him back to the MRI room he would be in for the next few hours. I met with the Anesthesiologists doctor and completed paperwork and a long questionnaire. Since Jacob’s craniotomy, he now has a small amount of titanium hardware in his skull and they have to ask you a thousand more questions than usual. They put Jacob on the table awake and G and I stayed with him until he fell asleep. Jacob was only given an IV anesthesia called Propofol anesthesia and no breathing anesthesia. It only took a minute for Jacob to fall asleep after I kissed him and wished him sweet dreams. It is always hard to watch them put Jacob under anesthesia and walk away. I am left at that point to be alone, without Jacob and think about his NF2 and why he is having a MRI. It breaks my heart to see him lying helpless on the table bed with the huge machine surrounding him and monitors and such attached to him. It’s hard to explain, but is not a sight I wish for any mother or parent to have to see.

The MRI started at 8:10 am. The doctor taking care of Jacob told me to come back at 11:00 am and if anything changed he would call me. Gavin and I went back to the Inn. I ate breakfast. Then I took G outside to play on the outside playground. He loved the baby swing, but because everything else was so wet from the rain the day before he wasn’t able to get down and crawl around. We sat by the huge Holly tree and watched all the birds flying in and out of it. They were singing and making a lot of noise. G and I found it very entertaining. We went back to our room so I could fold laundry from washing the night before and put G down for a nap. I ended up falling asleep too, but for only 25 minutes. I was very upset when I got back to MRI at 11:00 and the doctor told me they would be taking 45 more minutes of scans. G and I could have been sleeping all that time!! The doctor apologized for not calling me. He also informed me Jacob would not be coming back that evening. Jacob was originally scheduled for a second brain MRI that evening without sedation and without contrast. They usually do this for comparison. The head Radiologists decided during Jacob’s scan that they would go ahead and do all the scans at the same time and didn’t need ones later. I was happy it could be done this way. I was thinking about our afternoon and what we would be able to go and do..Maybe the Washington, D.C Smithsonian Zoo!! Gavin and I waited and when Jacob was done having the MRI we followed him up to Anesthesia recovery. He was sleeping so peacefully. I kissed him again and told him I would be waiting for him to wake up. G and I sat in the waiting room for a very long time it seemed and we were finally called back. Jacob was still sleeping. He continued to sleep for over an hour, even with G and me messing with him. He finally woke up and decided he was very hungry and super grumpy. After he ate some crackers and juice he was sent back down to the Pediatric Day Hospital where we had started that morning. A very nice nurse had reordered Jacob’s food request from that morning: Cheese burger, French fries, and a milkshake. It was very late in the afternoon at this point and the original order from 11:00 am had gotten cold. The nurse ordered 2 of everything (3 cheese burgers) so Jacob and I sat and ate together. Jacob said very little and was more irratated than usual after anesthesia. I knew at that point there would be no trip to the Zoo that afternoon and that Jacob had been given a little too much medicine. Jacob insisted to his nurse that he was ready to go, so she made him walk around, use the bathroom and put on his pants alone to prove he was fit to be released. At 3:30 pm we made our way back to the Inn. I had to make Jacob lay down for a bit. He still felt like he was 10 feet tall, but was mouthy and unsteady. We all took a nap.

Tuesday evening turned out to be a nice night. A nearby Cancer center came and made Tacos for the families and once again there was fruit and yummy dessert. We sat and ate with a nice family from Tennessee. Their 3-year-old son’s name is Corbin and Gavin enjoyed watching him. Jacob played video games with David and Corbin’s dad until late and Gavin and I went down stairs to play in the under the stairs soft block room. We also met Viola, the Inn’s beautiful Golden Retriever Tuesday night. We sat and pet her for a long time. She enjoyed licking Gavin’s left over dinner from his face.

I can assure you that I had no trouble falling asleep Tuesday night, Gavin stayed in the bed with me and we didn’t wake up until early morning.

Another day down and one more day closer to getting home to Tallahassee. I was ready for Gavin, Jacob and I to be back with Brie, Thomas and Grissom.

Wednesday we would have an appointment at the Eye Clinic, an appt with the Ear, Nose, and Throat doctor and Balance Vestibular testing.