Sit back, I foresee this being a long post.
Today has passed so fast with a lot to do. Being away from home makes a lot of work when you get back. Not to mention the fact that we're still lacking our dishwasher which broke in the middle of last week. I didn't realize how much I loved my old Kitchen Aid dishwasher until it was gone. Darn it. But when I called the repairman he said since it's 15 years old (makes me wonder where it came from since the kitchen was totally remodeled right before we moved in, and that was Oct '05) that if HE were me that he wouldn't bother putting any money into it. Anyway, I'll be watching for a floor model or a closeout in the next little while. Just what I need to put $$ into right now!!
So, I've been trying to decide how much to talk about the last few days- We really don't have a lot of answers yet so I have a hard time talking about things I don't know much about about myself. It's amazing, since the day Jude was born I had this feeling that I needed to learn to be more patient, and I always took it that I needed to be more patient with others, but I'm starting to realize that before I can be more patient to others I need to be more patient with myself. I think Jude is my lesson in patience with myself. Coming to grips with the fact that sometimes we can't understand everything, and desperately trying to live my life for my family as best I can even though I may not know everything that I think I need to about some things.
We went up to Seattle to have EEG and MRI tests done to rule out any issues that may have caused Jude's enormous seizure last week. Since he has NO personal or family history of Epilepsy, they wanted to take a look and see if there was anything going on and also to get a "baseline" for any problems he might have in the future. Everything went great- the EEG was perfectly normal, his amino acid tests totally great, all his other bloodwork clean with the exception of his white blood cells which are still elevated. I met the morning after his MRI with a Neurology nurse practitioner, and after she asked tons and tons of odd questions she finally got down to the meat of our discussion. She told me that although there were no tumors or lesions found they did come across an "incidental finding", meaning they found something they were not looking for, that was not related to the illness he currently is dealing with.
Jude has a rare brain malformation called Chiari 1. It's congenital, meaning he was born with it, and also CAN be hereditary, although that is not something they focus a lot on. Something that is important to point out is that is has NO RELATION to his Alpha 1, and so far as we've been told NO CONNECTION to his seizure. I'm not 100% convinced about that though, I've read some things that make me feel a bit otherwise. The condition is hard to explain, and like I said, I still know very little about it, so I'll try and make as much sense as possible. I tracked down this picture so you can understand a little better what I'm talking about. I'm still taking it all in myself.
The skull has a small opening at the base of the neck. Generally the cerebellum curves up in a rounded shape, but Jude's is actually growing down his spinal column in a beak like shape. The spinal fluid (CSF) flows up the spinal column and around the brain, but Jude's has only about 10% of the flow through his CSF spaces that he should. This can cause too much fluid to stay in the brain, from poor drainage, or not enough, which can cause compression of the brain, especially around the base of the cerebellum.
The cyst that you see in the second picture is called a Syrinx, and as of right now Jude does not have that. But in time if the cerebellum is left with it's hernia it could cause a Syrinx, many developmental problems, paralysis, and tons of other issues. Also, the biggest problem with Jude's particular case is, the flow of his Cerebral Spinal Fluid is very restricted, so compression will potentially be a problem.
Now comes the part about patience. Thursday after I was told all this, (and that they have no idea what's behind the major seizure) Jude started with fevers. Early Friday morning Elijah and I finally took him into the Emergency room at Children's to try and get his temp down. He was at 105 with Tylenol, and wasn't getting better after almost 8 hours of trying different things. We were sent home after the ER got his temp down to 101, but shortly after we got back to where we were staying it shot back up again. We went to an appt to talk to a Neurosurgeon about the Chiari that they'd found, but the Dr was unable to meet with us and after his nurse answered a few of our questions she told us we needed to take Jude back down to the ER because he was too hot. We checked BACK in to the ER and then after just getting Tylenol for him and seeing that his bloodwork wasn't showing a bacterial infection, we finally decided to check ourselves out and try to get home. We drove him home and have been dealing with his super high fevers ever since. He hovers between 102 and 105 for about 10 hours at a time, and then cools off for an hour or two when he eats, and then will start to get quiet again and his temp will come back full force. It's got the two of us frustrated beyond belief because there is NOTHING that we can do about it. He doesn't respond real well to Tylenol or Motrin, and you can only convince a miserable 2 year old that a tepid bath is a good thing every so often. Elijah and I have been taking turns sleeping and taking care of him, and we're hoping that maybe tomorrow will see a better day and he can take this virus down. All we can do is try to keep him comfortable and figure out creative ways to get liquids down him so he won't get dehydrated. If it goes through tomorrow we'll have our pediatrician check us back into the hospital so he can get some IV fluids for a day, but we want to avoid that as much as possible because Jude turns into a maniac the moment we walk through the hospital doors. I am frustrated with the situation and impatient that we spent so much time up there and only came home with a new virus, new problems, and new questions that can't be answered just yet.
So that's all I have to tell for now. We can't make any decisions about how to treat this for him until we talk to a neurosurgeon and have a different kind of MRI, and as of now none have any appointments available until July. We're looking into going somewhere else for a consult, but Dr. Ellenbogen at Children's is supposed to be the best in his field with Chiari, so we should probably just sit tight and try to make sense of this and wait in line for a standby appointment. At that point we can know more what we're dealing with.
It's time for me to take my "sleep shift". so I need to get off. Let me know if you have questions. I'll try to answer them as best as I can.
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