Sunday, October 02, 2011

Docs? Don't forget to listen to the Mommies!!

Long time no see. Life has once again taken over anytime I could have to sit down and share. I should be in Springfield today, visiting my bestest girl, Stephanie, molly's teacher and advocate, who had to retire from her life's calling to battle an autoimmune disease that mirrors MS. She is getting treatment at Cox today.


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We love you Steph, and little miss rattling chest has shut down ANY plans we had today...it's perfect pumpkin patch weather, too....but we are staying home, drinking hot tea, nebulizing and praying this doesn't take her over.

In the time that we've been offline, My mom crashed severely, and the port that was installed into her arm had healed enough to allow her to start dialysis. She is in Colo Spgs with my sister, and we worked out a visit with her a month ago. It was so good to rejoin my parents, and see sibs I haven't seen in TOO long! My baby brother Rich, namely.

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got to go thru some old pics...this is the way we used to look!

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My sister patty has been in charge of the dialysis, which happens Monday, Wednesday and Friday. My appreciation for her saving mom's life, will never be effectively described to her.


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Dad is here with me, and struggling with issues of his own. Today is their 63rd Anniversary, and it's sad that they have to spend it miles apart from each other, but unfortunately some things are just the way they are. We continue to work towards some kind of reuniting for them. Happy Anniversary, mom and dad!!

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Molly was VERY happy to see Aunt Patty, and understand where Gramma went...she has been looking for her at our house! ;-) To adulate again, the power of listening that Patty has, after a 15 hour drive, Molly was met at the door by her, and she had a stack of solo cups to give to Molly. Patty understood that molly was gonna need some 'stim time' and that stacking cups has a HUGE calming effect on Molly. Simply amazing to me, that someone GETS IT!

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Also during this time, Gabe, My Beautiful Gabe Graduated with TWO DEGREES from College. Words cannot express the pride i have for him, as he did this while becoming a husband, and a father 2 times over. He also is Amazing, as is his whole family:

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And Kelsi Graduated from High School in Kansas City....I might add...both graduations happened on the same day!!

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Having a super happy summer! Then.......


On Aug 23rd, at 5am, with no fever or any head traume, and sleeping peacefully between the sarge and i..molly had a grand mal (tonic clonic) seizure. Her first and we're praying her only one....It sent us into a whirlwind of testing (or trying to test) and a new world of neurology! First we made an early morning run to the ER...this was after it took me too long to dial 911 (i missed it twice) By the time I actually got an operator on the phone, and she made me understand that I needed to give her our address...The seizure was over. When we tried to walk her to the car, she had only 1/2 function of her left side. That arm was flopping, and she was dragging the left leg....I rode in the back all the way, just knowing she had a brain tumor. It was the longest ride of my life.

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The CAT came back all clear...The nurses were worried about mama now, she was freaking them out....Sorry about that nurseys, and yes, I was 2 seconds away from total heart failure.

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Molly has no idea what happened, and was actually pleased to be where she was, as Miss Stephanie met us at the hospital, wowed us with her instant diagnosis of the CAT, and even asked the nurse to give me a copy of it on CD format...something I would have never asked for. Her mom was right when she tried to explain to Steph that maybe she is going thru her own trials, to be a vehicle for those of us just starting down the path of neuro-opportunities.




One of the follow-up tests required us all to go to Springfield and stay up all night. I worked till 9pm, then we drove to Spg, got a room near the hospital (2 beds ok?....no beds are necessary) Molly and i would walk to the Caseys mini-mart once an hour all night long. She actually did better with it than the sarge & i. (ugh)

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They were to perform a "sleep-deprived EEG" which i went into blindly. It wasn't until i chatted with a "pro-mom" who was also there for the same thing. Her boy was a teen, and started seizing at age 3yrs.

She told me that they would attach all the leads (yea, right) let the child sleep a little, and then startly them awake trying to INDUCE a seizure with strobe lights and a tired brain....then they could track the seizure with the EEG and identify what side of the brain was affected, etc. EEK!!


I had been on the phone for the 4 weeks prior to the test, begging them to find an alternate way to do the test...my little girl is 114 pounds of solid mass, that will not allow anything to be attached to her person. It's one of the quirks of the OCD that comes with the spectrum. I knew there was no way it would happen....they were adament about "non-sedation" for the procedure.

So, no one listened.....I get so tired of being dismissed as a psycho-mom by the medical world. And as it happened, even though we took the time to prep, and she stood for 'the hard part' which was scrubbing holes into her head where the leads would be placed, she would not allow such an invasion of her personal self.


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I'm betting i will still pay for the procedure..the bills have not started to trickle in yet.

I was also berated by the sarge, for my opinion of the pediatric neurologist. He made me uneasy and seemed irritated if i had a question....and spoke in archaic medical terminology..for instance, when i told him that there was indeed a family link with seizures, he asked if the other family members were "also retarded"

?????? really?....retarded????

I couldn't help but think that if he spoke like he was still in the 70's...maybe he wasn't open to new and improved ways to treat. To me, I got that answer with the whole "sleep deprived" EEG fiasco....and our meeting afterward. He was irritated that molly did not perform, he did not acknowledge her OR the sarge in the examining room, he was irritated that i didn't feel like we needed to start seizure meds, even though she made it through another cycle with no second seizure.

She continued to stay awake for the drive home, and until i put her in the bath. It was gonna take a full bath as she had attacked some chocolate ice cream when we got home. What a little Trooper!

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VINDICATION from the sarge on our way out of the meeting....we won't be going back to see doctor "Simba the lionhearted maned, douche-bag, Dr R-word" In fact, I'm just going to be safe, and watch that she is never in a position where a second seizure would be life-threatening, and wait. I will live in this denial bubble until she gives me cause to change lanes....then we'll head for Children's in St Louis, and start the process all over. We can do the EEG In-Patient, but it is too expensive just to do, without failing the procedure we just failed. I don't understand why we just couldn't go that way from the git-to. I wonder when they will start listening to the mommies.

2 comments:

ABandCsMom said...

in my experience with many doctors for Carly...the only doc's who listened to ME...were our actual doctors. The doc's/nurses/techs who did not take care of Carly, NEVER thought I knew squat. BUT, our regular docs., neurologist, cardiologist, oncologist and our primary care doc along with our "regular" nurses, ALL listened to me. It's so frustrating when you get a doc who doesn't want to listen to mom. You seemed to have handled the "R" word reference much, much better than I would have. I would have throttled that doc..or whoever it was that said that to you. By the way, I love Molly's new haircut!!

e said...

Awwwwwww thanks...it's so much easier, she'll even let me flat iron it! I love our family doc & so does Molly....but the specialists? EEK! Everyone has SUCKED! hoping StL has less ego, more answers