Since this started out as a blog about Gage and our life with spina bifida, I guess I should update when something significant happens in that area.
I'll start with last week, even though we didn't realize it was significant at the time. Last Monday or Wednesday, Gage was in PT and someone came to get me and said something about his nose. I assumed he was having a nose bleed, which is normal for him, especially when the weather cools off. When I got to the gym, they said he had just had a big gush of clear, non-mucousy liquid from his nose. It was obviously a lot- all over the PT's scrubs and some on Gage. He hadn't had a runny nose in the days before, and didn't in the days after. We consulted Dr. Google and found that it could be a CSF (cerebrospinal fluid) leak, but decided to wait and see if it happened again before freaking out about a runny nose.
So this Tuesday morning, Gage woke up and told me he had a headache. No biggie, here's some Tylenol. Tuesday is a work day for me, and so I took the kids to their babysitter's house for the day. I told her that if he was still complaining by lunch, to let me know...that with kids with shunts, you always worry about a malfunction if there is a headache and no fever. Got to work and was almost done treating my first kid when I got a text that Gage had thrown up. Not long after, another one saying that he was asleep. Okay, time to worry. In a crying scene, I found another therapist to see my 2nd kid, who had already arrived, and canceled the others that day, and left to get the kids. I called my mom to meet me at the house to keep Evie. I packed up some stuff at home and headed to Little Rock with Gage. We picked Tony up from work, then headed to the ER at Children's.
When I first got him, I started to think I had over-reacted and it was nothing. He was acting pretty okay. Then he fell asleep in the car, and after we got checked in to the ER, got progressively worse with his mood. He was telling nurses to leave his room, which, if you know Gage, is totally unusual for him. He was impossible to calm after they put in an IV. He had a head CT and a shunt series (x-rays) then we waited. The doc came in and said that his ventricles looked large, but that the last scans she had to compare were from 2008. By this time it was about 4:30pm so I quickly called Conway Regional, where Gage has been getting his MRIs since we began seeing Dr. Boop in Memphis for neuro. The last one they had of his head (not just his spine) was from 2010. Good enough, but how were we going to get them here? This wasn't a trauma so they wouldn't use their system...whatever that was. It was just about after hours and med records was closing. The courier would basically have to wait til tomorrow. The med records lady said she'd stay if someone could come by and get them, but I'd have to fax over a consent. Done. Dusty went by and got the CD, and came up to bring it to us. Whew! Those did show his ventricles were bigger, and surgery to replace the shunt was warranted. The neuro scheduled him for Wed morning but said if she could get him in that night, she would.
And she did. They got us admitted and in a room, and at about 8:30 he went down to the OR. That wait is awful. It drags and drags. I deal by pretending I don't know what is happening down there. Dusty stayed with us and helped to ease us a little. Finally, at about midnight, Gage got back in the room. Surgery went well. We assumed it would be the catheter in his head that was blocked, as that's the most common, and we knew his was not placed well. Turns out, it was the one going down to his belly that was blocked up and needed replacing.
The change in him was almost immediate. He came back from surgery chatting. As I got settled for bed (Tony went home with Dusty) Gage gave me a play-by-play of Wreck It Ralph. He finally got settled and we tried to sleep. He had trouble staying comfortable, oddly, thanks to pressure in his belly and full bladder. We finally got that taken care of and he rested. We got to come home Wednesday. He was slow moving Wed, and had some more belly issues. By Thursday, he just rested more, and today, he seems almost back to normal.
We were really pleased with just about everybody we dealt with at ACH. There was 1 resident or intern or somebody that either didn't know what SB was, or didn't bother looking at his chart before he came in. He was annoying. Other than that, we loved everybody. Gage got visits from several friends, including his beloved Reesha (his PT), and fellow SB dad Matt, who also brought us breakfast. We've been taking it easy at home, and hope to resume normal activity next week.