Chicken Sacrifices and Calls to the White House

>> Thursday, April 13, 2017

Haven't done either...yet. But the chickens are being fattened-up as I type.

Bug had a bad November. I will detail that later but it ended up pretty well. Now, however it has gone to shit. Complete and utter shit.

After spending 6 weeks in Hospital at Johns Hopkins, he was able to come home, and was seizure-free for the longest period in his life since the seizures started. Seizure-free. You read that correctly. AND THAT is a hella story.

We thought we had developed a good relationship with our team there, but life outside of Hospital has been less than helpful. So why did we lose seizure-free? No clue BUT it seems to coincide with Bug walking again. Probably a coincidence entirely, but you never can know until you have facts in hand. With a nonverbal kid, facts are the ONLY thing you will ever have and if you don't go LOOK for them, you never get what you need to help him. Nothing will guide you, no complaint or off-the-cuff remark; you have to be proactive. A fair amount of medical professionals will make you feel like you are an overbearing, paranoid Mother for that. I am his advocate, like you should be, let's work on this together...instead...Mother Reports. This is peppered in Bug's medical record. Mother reports. Pfft.

I digress.

When you spend as much time as Bug did in a prone position, your muscles stop functioning properly. PT came in and we developed a stretching routine which made great progress. We stretched his legs and feet everyday and it helped quite a bit. Let me back up: in late 2015 we discussed Bug's feet turning in with his Utah Doctor and we were aligning Botox to help relax the muscles and maybe straighten him out a bit. It didn't happen. We moved and moved again and by the time we had landed in Maryland, he was in Status and at Johns Hopkins.

When we got him stable and after a stint in rehab (I LOVE typing that...makes me giggle), he went home and began walking everywhere, slowly, but damn! We had to just follow him around to make sure he was safe, we could not stop him. He did NOT want to be down. Who could blame him? Within a week he was conquering the stairs like a champ.

Also, after a week of being home, he began seizing again. Honeymoon was over and depression set in. We made several appointments and met his team outside of Hopkins and changed the plan a little and added another plan. A plan that include foot surgery.

One day, I was whining on Facebook and this question was asked:


Bug has not always been a toe-walker. In fact, it didn't start until he was 9 or so. Then he didn't walk for a while because he was in subclinical status off and on, but before that: rock solid. Wasn't clumsy or collapsed for no reason, he would just GO! You can read the entire exchange between my new bestie, Patricia, here:

https://www.facebook.com/amaughan/posts/10209066902085867?pnref=story

In the back and forth it became apparent that there is a good chance Bug has a tethered cord. I decided to ask the KBG families in our private group. This group has provided insight, support and been a great help for nearly the last 2 years, they are literally rewriting what is known about KBG. I harmlessly asked this:

I was stunned by the responses. 11 said they had a sacral dimple, and 4 had either had surgery or were suspected of tethered cord. 2 were going to check on it, and one of those came back with a tethered cord diagnosis. Let me point that out clearly: Since this post on March 23rd, ONE patient has ordered, had the MRI and has been diagnosed with a tethered cord. I point that out because I started calling the beloved Johns Hopkins the same day this family did. This family. Going to the Ped. In Arizona. I called Bug's Orthopedic Surgeon and his Neurologist.  I left 2 messages and didn't hear back. I called and left more messages, two more, in fact and then Bug had his weed appointment at NYU.

We met the lovely Sherry (who should be mad at me right about now) with Erin and Dr. Devinsky. Lovely man and I nearly want to edit my blog post about his stance on CBD from a few years back, but I stand by my words and, contrary to popular belief I don't always have to be right. They were fantastic and asked me how everything was for Bug and did I have any problems I wanted to discuss? I said: One of you could call Hopkins and step up getting an MRI of his lower spine. Ha, Ha.  Oh? They said, do tell. So, I telled. And walked out of the room with a prescription for an MRI! What the what, right? I told Erin if I couldn't get it scheduled with Hopkins within another week...JUST SCHEDULED...I would call her back. We laughed. It's not funny anymore.

On April 5th, the first day back after NYU, I called Nuerology again and Ortho called back. I was told that Bug didn't fit the criteria because his ortho problems started while in hospital in November. Uh...nope. We discussed the reality and Doc agreed it was good idea. A good idea! He would order the MRI and get a referral to a Neurosurgeon to go over results.

On April 6th, I was heading out to get milk and Bug began to follow me. I was at the bottom of the stairs and turned around to see him lose his balance and begin to fall down the stairs...from the top step. I stepped up to try to slow it down and about mid-way up I caught him and we BOTH fell the rest of the way...me holding Bug to protect him. He landed on me and I landed head against the wall and hurt my bad leg.  Nothing broken, but I need a follow up with an Ortho. The pain...worse pain I have had with an injury NOT surgically related. My 8 surgeries on that leg have taught me to deal with pain. This pain is new.

By April 10th, I had not heard from anyone so I called Hopkins radiology myself. They had no record of a request for sedated MRI. Push, shove, pull, grovel and I was told Neuro would call me back.

I missed his call that night but not the next morning. He also agreed Bug should have one and asked me to fax the Prescription. I did and I waited. That was Monday. Now, keep in mind..this is just to SCHEDULE the MRI, not to actually have it done, I wasn't asking for special treatment or lobbying for quicker access, just trying to schedule an MRI. SCHEDULE. Once again, Bug took a small tumble down the stairs that day when his leg seemingly gave out. It was only 4 steps but the impact threw him into seizure.

Today, the 13th, I called yet again after watching Bug wince his way down the stairs (I made him sit down and helped him lower himself one step at a time), I was told the order from NYU was there but I need to talk to someone else since he needed sedation.

This call caused me to cry. Not anything that was said, just...

This is Bug's life, over and over and over. Ask for test, told no, then told yes, then lose results, then get results, then find he does need treatment. Delay after delay after delay. It wouldn't be so upsetting but so far those treatments help him!  They were delayed for whatever reasons and yet...ultimately helped him.

While typing this, I got call from Hopkins Neuro. Boy did she NOT want to talk to me. She hurried me through: The out of state prescription won't be used because Hopkins doesn't do that so Bug's Doctor wrote one. WHAT? Cue ME as 'Miss Pissypants' and I HAD to point out that I was the one trying to keep this in house, the NYU script was just offered in case Hopkins said no. It was THEIR office, the Hopkins big dog himself that wanted me to fax that script. I didn't try to use it to get anything. She politely said: uh huh. We left it with: someone will call me back to schedule it and then I said thanks and she hung up. No 'goodbye', no 'sorry for the miscommunication' or 'dropping the ball'...just...click.

Regardless, now I wait for another call while I try not to cry sitting next to my happy boy spinning a Barbie car. He is fidgeting in his seat and all I can wonder is if he is in pain. He will sit like this for few moment and then move to the floor and lay on his side for awhile. I know pain, having been intimately involved on a daily basis for over 30 years and I can tell you: Bug is in pain. And only a few people seem to care about that. The really sad part: None of the people who care, can do anything about it. So we wait, and lose more faith.

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