NJ has had a rough couple of weeks. He's been very sick and I'm so tired and worried for him.
First he was having nausea, vomitting and double vision. I was almost certain they were the further Chiari symptoms. He had no other virus like signs. It didn't seem to matter if he had eaten or not. If he was laying down perfectly still he was fine, but the second he moved around or got up he would feel dizzy and get sick.
He missed the entire week of school last week because of it.
Then the weekend came, and so did the fever. High fevers, as in 104 fever!! It was releiving and scary all at the same time. I mean, fever means it's not Chiari. Fever means infection- virus more than likely.
Unfortunately, the symptoms continue and he gets worse, much much worse. He does nothing but sleep. He's not eating or even watching tv, just sleeping. For NJ, this is certainly alarming.
Which brings us to today. After a trip to the Doctor on Tuesday we find that he has a perforated ear drum....yet again. He perforated the same ear drum just weeks ago. The Doctor seems to think he has a Cholesteatoma
What is that (!?) you ask? (I said the same thing) Well, the Doctor drew me a picture. From what I understand, it's an abnormal growth of skin that grows in the ear. It can cause lots of problems from infections, ear drum perforations, bone errosion, deafness, blindness, menengitis and worse... If he has a Cholesteatoma, he'll likely need surgery to remove it.
The cause? Well it can be congenital, but more than likely he got this as a side effect from having tubes in his ears as a baby. At 9 months old he got ear tubes from repeated ear infections. When the tubes fell out as a preschooler, the Doctors warned us that there was still a hole in one of ear drums from the tube. It had not healed closed. It was something to keep an eye on and might require a breif surgery, basically a patch over the hole. Well, we dropped the ball and never had it patched. (Forgot all about it actually!) The growth has probably been forming for a while now.
As if our plate wasn't full enough! He see's the ENT Doc on Monday and so we should know for sure soon. In the meantime, he's been on antibiotics since Tuesday and is still running a fever. He's missed so much school on top of what he's going to miss when he head to Chicago later in the month to see the Neurosurgeon for the Chiari.
Send thoughts and prayers please!!
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.....Final Adoption post to come, I promise!
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O I have missed so much! Congratulations on the adoption finalization! Hurray! You have waited so long. I am very happy for you.
I am sorry about NJ. I hope he is feeling better and he can get the help he needs soon. We used to live in Chicago and had friends who went to University of Chicago. We took our kids to Hope Childrens Hospital though. I don't know about Comers, but I do know that the school is excellent.
Geez....if it's not one thing, it's another! Poor guy. Hope you get it all figured out soon!
As for the Riley updates.... I will forsure keep you in the loop. Heck, we might just even be neighbors at the RMDH! Please keep me in the loop of what your plans are. I would love to connect since we'll be SO CLOSE! :)