Wednesday, September 10, 2014

MRI madness :(

I've never been one to be mad or upset with our medical system. Nothing has ever really bothered me or gone wrong in direct correlation with our doctors or services. 

This week has been a WHOLLLLLLLLE new story.

 I know lots of you have been praying for our toddler, thank you! While it seems funny to say, she has had terrible hiccups for over a year that come and go but have been progressively getting worse to the point where she pretty much always has them now. She'll have them all day all night with no breaks for days. Then she will have a day off and then they start again. Last week one night she was having so many (like 8 hiccups at one time) to where she was gagging to try and exhale. Her Dr. felt like something was really weird and not right with these hiccups. So last week we visited her pediatrician and got xrays, blood work (oh joy) and other tests done. Her Dr. said words you never really want to hear as even a possibility for your child. She mentioned that intractable hiccups can be a symptom of something growing/touching the nerve that causes the diaphragm to a tumor. Fantastic. lol. It would be one thing if she dropped that word and then got her in for an MRI the next day, but it has now been 2 weeks since that. We have been working very hard at keeping our minds from running away, knowing that we don't know anything for certain yet.

Even though we feel really strongly that she doesn't have a brain tumor (maybe just hopeful?) we would still like to be able to breath again knowing there isn't one there causing these hiccups. 
It has been such a hassle unlike anything we have ever done to try and get this MRI scheduled. What we thought was a simple order from her Dr. was anything but. The radiologist didn't review it for days, the insurance company denied it, her Dr appealed it, they approved it but only in part, etc etc etc. 
We have called 5 times a day everyday trying to be annoying and persistent to get this through. It is the worst feeling ever to feel powerless over your child's health. Even worse, to feel like no one really cares. We are SO thankful her pediatrician is equally angry and very much our advocate in this. Unfortunately she is not a specialist so her voice doesn't mean much. 

So today they finally finally finally called us! BUT they told us two things. 

ONE = They had a spot for her tomorrow (great! I was thinking!) but it's at 4 pm.......and they need her to fast all day until that point. Ummmm I'm sorry, the fact that a pediatric imaging center is even requesting me to not feed my 3 year old all day till after the appointment which would be evening is crazy. I don't even know how I could do that! 
TWO = Only imaging her brain STEM was approved, so she will need to get another order and do this all again for the entire brain. This is where I really got angry. She's fasted, she's sedated, she's in the machine and they refuse to look 4 inches up and do this all at once!?!? This really made her Dr. mad too. 
We had a very hard afternoon today trying to decide what to do. If we said no to tomorrow's appointment offer we basically give up her urgent MRI status and the next option is 3 weeks from now (cause that makes perfect sense right? For a toddler who could have a brain tumor?)
But we both just felt like there was no way we want to do this twice especially having to not let her eat ALL day (did I mention tomorrow is her birthday too :( . So we chose to wait and take the later appointment. It's hard hoping that something ISN'T in there growing or getting worse because we chose to wait, but we really didn't know what else to do. 
Anyways, that's our current frustration. I am sure it uplifted your evening LOL. 

Please pray for her. Pray her hiccups don't come back as bad as they have been, please pray she doesn't have any new symptoms, and most of all pray that an MRI appointment will come available and that the scan will be CLEAR.
Thank you friends! 
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