Phones - how I hate you.

>> Monday, April 17, 2017

Kennedy Krieger called back about his MRI.

Sigh. Am I making too much of a big deal over this?

We wait. Again. For how long? I have NO idea.

Because Bug needs to be sedated, the anesthesiology team needs to be brought in and that can 'take some time'. No clue how much time, but clearly there is no priority here.

I told her thank you and pointed out that he is walking less and less and it's very concerning. She said: I'm sorry to hear that, we will get that scheduled.

I hung up and nearly cried. Again. I have never felt like Bug was so unimportant to any medical professional in this very long, very frustrating journey. Decades of Doctors and hospitals and this one takes the freaking cake. We just have to wait, and believe me, I am patient, I really am, we have waited and waited and waited some more, but never nearly 4 weeks JUST TO BE SCHEDULED! We waited a year once, after we were scheduled, to see the FRa specialist. The delay for Arkansas scheduling was to be expected: The Doc was new there and he didn't actually have the ability to schedule. Once he did though...

Meanwhile, he is back to seizing every few minutes while sleeping. Not as bad as November since we can wake him up and he plays during the day, but one can very clearly see he is in pain. His rescue meds are stopping the seizures for 4 hours at a time now as well. Have to be careful with that though, he does build up a tolerance so quickly. The question is WHY is he back to seizing so much and what can we do about it? We wait, is what we do. Wait to see if it his stomach, which we KNOW he has issues with, is causing him all sorts of problems (scheduled March 30th for May 1st).

Bug's ABR at PCH - 2010
If his ears are causing him balance issues, his ABR (which also took some time to schedule - Fax for pre-sedation approval sent Feb 22nd, my follow up call was March 30th and they called back March 31st) is scheduled for May 16th. The ABR that his records show he failed but I was told he only had ONE minor problem with it but it shouldn't be a big deal. The ABR report suggested follow up and when I asked about follow up I was told it wasn't needed. Glenn asked me if I could have misunderstood them and forgot to follow up. I nearly punched him. No. NO, there is NO way I would overlook something like that, I would be all over that like ugly on a monkey. NO. He shook his head: " Ya, sorry, just trying to give them the benefit of the doubt".  Add to that his hearing test that he had while in patient at Kennedy Krieger showed hearing issues. I was told the results of that showed a possible inner ear issue (matching the report from the earlier ABR) and yet, when I went to schedule the ABR, Bug's speech therapist at Kennedy Krieger asked why. She said: his hearing test was fine.

I really am dumbfounded why this boy has THIS luck. I have to assume it's because he can't speak and because his EEG is so ugly. But he still IS. HE IS and he deserves all the help we can muster.

We are always waiting for someone else. His life...is not his. It belongs to the Scheduling department and to them, he is just another sick kid. We can't schedule all three tests at one time though, even though he seizes when he is out, we can't do that because THAT isn't considered a medical risk like respiratory distress. It's JUST epilepsy after all. I imagine I should have pushed the hell out of these more when he was IN hospital. They could have done ALL of them in November when he was getting the LP. Not that I didn't ask, multiple times, it was just suggested we do it all outpatient. What a shit idea that was that we agreed to.

2 year old Bug with Taylor
The thing is: they didn't see 3 year old, neuro-typical Bug, they didn't see the awesome big brother...they see epileptic, autistic boy with slow alpha waves. They see: 'very unfortunate to see.'

We see a young man who smiles and makes everyone around him happy. We see Bug, who can seize all night and still get up and give kisses in the morning. We see Glenn, his father's son who deserves to be just like him.

Maybe our eyesight is skewed because we know him, but I like to think that everyone deserves a chance to live life to the fullest.

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Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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