Wednesday, April 30, 2014

Almost a Year… 9 months with No Hospital Stay!

Many of you know that we have been at All Children’s Hospital since Monday, as I have been updating on Facebook…but it just occurred to me that some of you are NOT on Facebook…so here is the scoop…

I really do believe that everything will be ok…and I trust that prayers will be answered and that this will get better, but tonight I am giving myself permission to be really really furious with autoimmune, auto-inflammatory, and immunology diseases!  They really do complicate our little guy’s life big time!  And it is totally not an easy road!

Last week Parker shared with us that he has been having some vision issues (he actually was having issues for several weeks but didn’t say anything).  We went to the ophthalmologist and Parker shared that he is having blurriness and  intermittent blindness when he moved his head/neck or changed positions.  He is also having headaches and nausea.  The doc tried to decrease his fright by saying it was likely a med side effect or high blood pressure… until he actually looked in his eyes.  He is having papilledema (swelling on the back of his eye nerves) and several things can cause this.  So he told us we needed to get in to a neurologist.  We tried all week to get a neurology appointment and even the ophthalmologist tried …but before we could get an appointment, Parker’s intermittent vision loss was increasing in frequency and length of time.  It was progressing.  He is also having fevers daily for about a week that come and go.

So after calling both the ophthalmologist and the rheumatologist, we went to the ER.  Rather than going all the way up to Shands Hospital we decided to go to ACH because the ophthalmologist and neurologist were at this hospital.  An MRI was done and ruled out a tumor and MS.  Good news.  But when looking in the eyes, Parker definitely has significant swelling on the back of his eye and it was neither uveitis nor iritis (two eye diseases that sometimes happen in conjunction with JA). 

Parker took this just before his spinal tap.
He was admitted and a spinal tap was done the next day.  The spinal tap confirmed that he had increased pressure.  Although the spinal tap was used for diagnostic purposes, the hope was that it would also relieve some of the pressure, thus the swelling in his brain.  They removed some of the cerebral spinal fluid but as they did, the pressure tried to keep shooting up.  They did remove some and they actually hoped he might continue to leak some from his spinal tap sight…but he didn’t really do this.  The neurologist explained that he is one of the “rare kids” and that this might be a bit challenging with things getting worse before they get better.
He confirmed he does have what is called a pseudo tumor (increased cerebral spinal fluid (CSF) pressure).  When he looked in his eyes today it actually looked worse.  He also said that even though they removed CSF, it was probably already reproducing. 

He pulled the MRI pics up on the computer and gave Parker and me a little tutorial.  He also said there was a small lesion on his frontal lobe, but he is not overly concerned with that at this time.  The plan was that he would be discharged today on Diamox...we even got the A-Okay from rheumatology.  But then we found out, nope…he can’t have it because it is related to sulfa drugs which he is allergic to.  So then they thought of an alternate (less powerful med) to possibly use and then they said no…it can’t be given with one current meds.  We were told at noon today that we were going home, only to find out at 8:00 pm that NOPE…we have to stay and wait to consult with pharmaceutical in the morning.  This may seem like no big deal…but oh my goodness it is such a big deal because if they cannot bring this swelling down then it could cause permanent damage. 

But the even bigger deal is the joy all this stole from Parker this week.  He put money down to reserve the new spiderman game way back in Dec. and it came out the night we were in the ER….Michael promised to take him to get that game.  He was so looking forward to playing his super hero game this week and then when we didn’t get to go home again tonight that was a really hard blow.  I know in the scheme of things this is small…but it is so big too.  And then there is the upcoming is Saturday!  He sooooo wants to be there.

Everyone is asking why this happened…they don’t know for sure but it was likely the perfect storm of disease, long term steroid use, and weight gain.  This poor kid has not grown in height since 3rd grade and is now in 9th.  Yet he has more than doubled in weight on his small frame.  And it doesn’t help that he is still on hydrocortisone for his adrenal issues because that can make the CSF pressure worse. 

In the midst of all this, we did get some good news…The good news is that he failed his growth hormone tests and he is supposed to start growth hormone soon.

So this is why we drive everyone crazy asking for donations for our JA causes…this is why we walk in the Arthritis Foundation Walk!  This is why we pray so hard and continue to have HOPE!  This disease has such an impact on our family.  We cannot do this alone and we are so glad we don’t have to.  Thank you doesn’t quite seem like enough…we are grateful to each of you and for what you bring to our lives.

Click here for our Walk Team Page:  Parker's Purple Playas and Logan's Dream Team

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