MRI of Spine

Will had an MRI done of his total spine yesterday. The MRI done last year started at lower back and went down to his toes. They couldn't look at his entire body then because it would have taken too long and he doesn't need to be under anesthesia that long.

Backing up a little bit, we are seeing a different neurosurgeon that we originally started with because he transferred to another hospital out of state. I really liked the original doctor because he was not too eager to do surgery; he felt like there were other issues most important that Will was dealing with. The plan was to keep watching him and do something if necessary. The new doctor is the Chief of Pediatric Neurosurgery and my first impression of him when we met a few months ago was that he was the type that wanted to fix the problem he saw without looking at he big picture of Will. He scheduled this MRI because he wanted to see what was missing from the first one.

We went yesterday morning and Will played with the "choo-choo" (Vandy has an incredible train setup) and fed the fish outside while I was checking us in. We got called back to pre-op pretty quickly. Will refused to get on the scale, take his temp, etc. He finally calmed down and then we couldn't get him off of the scale - new favorite toy! The nurse found him some cars with a track to race, so he stayed entertained for the most part.

He kept asking for the "choo-choo" so we told him he could play when he was finished. He of course got upset when the nurse took him away, but she bribed him with a Thomas the Train sticker, so the crying wasn't as bad as the past. The procedure would take 2-3 hours, so JT and I left and went to get some lunch.

For some reason, he prefers stickers to be put on his belly. I have no idea where this started.

Did I mention this was our 7 year anniversary?!?! Not a great way to celebrate, but at least we were spending the day together. We walked around for a while and then found a spot in the hospital to sit back and wait for them to call us. Of course we kept staring at my phone, and finally it rang. The nurse was trying to get Will to talk to me, but he was way to upset and all I could hear was him crying "Momma". We got to him as fast as we could, but he was hard to calm down, as he always is. He never seems to recover well. But I can't really blame him - last thing he remembers is being taken away from us and then waking up in a strange place with a stranger taking care of him. He was not happy about the "no-no" that he acquired while asleep along with the IV, and he was trying to rip it off. I was trying to calm him down so the nurse could take it out, but he kept yelling at her to stop, which actually comes out as "TOP" when he says it. It would have been a lot cuter if he wasn't so mad! He refused to eat or drink anything. JT finally held him and they sat in a chair together. His first words once he calmed down were "choo-choo', because I told him we could go back to that when he was done. He remembers everything! We got him dressed and went back to the trains. He started coming back to himself then and finally eating and drinking.

We met with the neurosurgeon about an hour later. The full radiologist report wasn't ready yet, but he knows what he is looking for. He said that Will has a tethered spinal cord. Instead of the end of the spinal cord flowing freely, it is attached to something like a fluid sack. The big concern was that the fluid was CSF (spinal fluid) and could be affecting the brain. It was confirmed that it is not CSF - just another type of fluid. This is good news! This means that nothing needs to be done urgently. I imagine it is some type of fluid pocket/hemangioma like Will seems to have all over the place (like what got infected in his abdomen after hernia surgery). Because of his vascular issues being so prominent at where they would go in to "un-tether" the cord, no surgery is recommended at this time. We have things to watch for like bowel/bladder problems, change in walking patterns, and other neurological things. Will's strength, coordination, agility, and other movement factors are things that we are absolutely not concerned about right now. He is so active and never seems to be anything but normal in all of these areas. Hopefully that won't change! The doctor said that the radiologist did mention some areas of concern in front of the spinal cord. I think this will be reviewed by pediatric surgery and our pediatrician. I wouldn't be surprised if what he is seeing is the fluid pockets that we are already aware of (the radiologist probably doesn't know much about Will's history). I guess we will hear about that later on. For now we have planned another MRI in 6 months to see if there have been any changes. JT and I would prefer to push that a little further because we aren't really up to putting Will through this 1-2 times each year. Hopefully we can all agree to repeating it in a year, but of course we will do whatever is best for Will.

Overall, we were pleased with the continue to "watch and wait" attitude. We are going to contact pediatric surgery about his right foot seeming to get larger every day - we don't want to wait until we see them again in April or May, but nothing urgent.

Will was a trooper as always. His strength and resilience is absolutely incredible to me!