SO much has been going on with Gavin lately that I haven't had time to really document it all. In fact, I am really regretting the fact that I haven't properly blogged all of his Riley visits because I rely on that information so much. So, I'm going to do a brief catch up now, but warning this is LONG!
Recently, we made 5 Riley trips in a 13 day period:
- Trip 1 Neely/Marshalleck (8-10-15) - Gavin went to a new Opthamologist, Dr. Neely, because he was seeing double and his eyes were turning in. They did lots of testing on his eyes and dialated them, before they told me he was really far sighted. Typically a child who is farsighted is at a level 2 or 3; both of his eyes are 5.25. Eek! He prescribed glasses and said that he has to wear them all of the time. I asked if he thought that there was a chance to have a vascular lesion in his brain due to the fact that he has a small spot on the top of his head. Dr. Neely was pretty confident that was not the case, but decided to take another look through a different lens. As soon as he did, he noticed blurriness. He ordered some more pictures. They called me into the room to show me that there was swelling and pressure on the eyes and optic nerve. Then, he had what I like to call the "Oh F*** Face", which you never want to see in regards to your child's brain. This is when things got crazy. He was calling in other doctors, referring us to see the neurologist as soon as possible, and ordered an MRI. They were trying to arrange it all, but we were late for our next appointment, so they said to go and they would call me. We went to see Dr. Marshalleck and filled him in on all that was going on. He did an ultrasound on Gavin's leg to check the coils that had been put in in July. He found more gaps and new branches, so he said he would go back in the next time he was put under.
- Trip 2 MRI/MRV/Lumbar Puncture (8-13-15) - The next few days were insane with phone calls. They decided he needed a lumbar puncture and weren't sure if we needed to bring him to the ER or he could wait until the MRI. Thankfully, they moved the MRI up to Thursday so we didn't have to wait too long. We met with Dr. Walsh first who reassured us in some ways, but we were still super nervous. Based on what he saw, he quickly added an MRV to the procedure. They did the MRI and MRV and didn't find anything, so they did the lumbar puncture (spinal tap). He did have too much fluid/pressure, but they are unable to determine the cause. He pulled some of the spinal fluid for testing and to freeze in case he needs it down the road. After a long day, we met some new friends at Papa Roux for dinner. They have a son with KTS who is four and live in the Indy area.
- Trip 3 Neely (8-19-15) - Gavin started a new medicine, Diamox, which is a diuretic to keep the spinal fluid from building back up. He really struggled to keep the medicine down and was throwing it up. I became worried and called Dr. Neely who wanted to see him on Wednesday. We took him in and everything appeared pretty much the same and he said that Diamox was the only medicine that would do that job, so we had to stick with it. We now give it to him four times a day instead of two. The new pictures showed the same, but he said it would be a while to get things back to normal. They also warned us that when he did get his new glasses, things would be really blurry at first until his eyes relaxed and adjusted. We go back to him on September 21st.
- Trip 4 GI/IR Procedure (8-21-15) - On the way to the appointment on Wednesday, we got a call that they wanted to do Gavin's next surgery on Friday. I said sure and started scrambling figuring out the details. He did the bowel prep on Thursday and then my dad and I took him to his surgery on Friday. When we got there, we took Gavin to a gift shop to pick something out for Miss Whitney. He picked out a sign that said "You make me happy, when skies are gray". It was the cutest thing and he did it all himself. She cried when he gave it to her. Those two have a special connection, that is for sure! When he was in his procedure, she went down and got him a bunch of goodies from the child life zone and hung out with us for a while. Gavin got two more coils making the total 37 and some foam in his leg. He also had some injections in the GI, but some of the old areas are acting up again and new spots are forming. Boo.... He will have another one in 3 to 4 weeks and she acted like these will continue. Because she is going on maternity leave, she wants us to meet the other surgeon who has been helping with the procedure. Once again....boo!!
- Trip 5 ER Trip (8-22-15) - We came home from Riley that night and the trip home was pretty smooth. The night wasn't too bad and the morning went well. Gavin was able to play with CJ and they started working on a puzzle. Once CJ left, Gavin started going downhill. He wasn't feeling well, stopped eating, started burning up, and was not acting himself. Brian went to get the girls, and by the time he got back with them, we were starting to panic. He spiked an underarm fever of 102.5 and looked terrible. He was so lethargic and out of it. I started scrambling: calling docs, planning for girls, packing bags, Brian took care of the animals. The doctor said that we needed to bring him back up to the Riley ER. I sat with Gavin in the back and he was moaning in pain. He threw up several times and was just pitiful. Thankfully, I was prepared. We got to Riley at 10pm Indy time. There was a Colts' preseason game and it was a nightmare to get to the ER. We didn't have to wait long before getting to a room, despite how busy they were. Crazy enough, Gavin didn't have a fever really. He slept most of the time we were in the room and they checked him out and determined that his immunities were probably pretty low due to everything he had going on. We were exhausted and felt defeated. While we knew it was the right thing to drive there, we were scared to bring him home again with the possibility of something happening again. They didn't see a reason to keep him, but agreed that driving home three hours wasn't a good idea either. They helped us set up a hotel room. We got some sleep and the next morning, Gavin was feeling a lot better thankfully. We were all happy to be home.
- Home Again, Home Again, Jiggety Jig - We've settled into our "normal routine" until the next procedure. Gavin gets Diamox 4 times a day, Gabapentin 3 times a day, and Rapamune 2 times a week. He is having a lot of accidents (pee, poop, and blood), so we are debating whether or not to put him in some type of pull-up. He is five and half and I'm trying to avoid that, but I may not be able to much longer. He got his new glasses and fell and broke them after two days. Thankfully, they replaced the frames free of charge, so he is all set now. He looks adorable in them and is adjusting well. His emotions have been all over the place: super giggly and happy to angry and mean to crying and sensitive. I really hope we get him in with Dr. Bowersox soon!