Thursday, March 17, 2011

it's quite a long story....

and i really don't know where to start with it. so i'm going to warn you now....this post might be a confusing jumbled mess, but i need to purge all this information from my brain in hopes that i can think a little more clearly.

simply stated: it's been an exhausting 2011.

i'm beginning to wonder if we don't have some kind of curse on our family. seriously.

i'm putting this all here because i don't ever want to forget how much strength we've been given to make it through trying times. His strength is perfect and He always carries us through.

i've had many emails from family, friends and even sweet blog readers worried about us. so, this post is just for you. are you ready?

let's start with me going for a second opinion on my back...

let's face it, i'm 33 and have NO desire to be in a back brace for months after a three level spinal fusion. i have a family to help take care of (when i can). and financially, i can't afford to miss extended time off work.

so, mid-January i had an appointment with a spine center--the same one that did the discogram--to get a second opinion for treatment options. this facility offers anything and everything except surgery.

i left that visit in tears. i didn't get to see the doctor, the nurse practitioner had me 'diagnosed' before hearing my whole history, tested my urine for drugs, then shoved a sample of drugs at me.

after asking more questions, she finally backed off of her 'i know more than you' attitude and ordered a series of blood tests. 8 vials to be exact. then sent me on my way with orders to come back in 30 days.

i went straight to my car and cried so hard i wanted to puke.

i had gotten my hopes up way too high only to be treated like another number and shoved out the door for another day.

i got back to work and immediately googled drug information only to find the first caution listed to be: do not give to patients with a history of cardiovascular problems.

then i cried some more.

i cried because i felt so small in a world so driven by pharmaceutical success.

i cried because i felt let-down by the healthcare system.

i cried because all i needed was a glimmer of hope, other options.

i cried because i thought i'd have another option other than adding more pills.

i felt defeated for the next week.

then i got a phone call telling me my lab results, and everything changed.

the week prior....
i had taken the girls to the dentist for a routine teeth cleaning, in fact, it was the same day that i wrote this post. oh, if i had only known what the next 60 days would hold, i'd have run for the hills.

anywho. we left the dental office at Children's Hospital with recommendations for an ortho consult and another appointment for ashlyn to have some work done a month later--in mid-February. they would be extracting a tooth, putting a spacer in it's place, filling another tooth and sealing three others.

mind you, ashlyn has sensory meltdowns often. the only thing i'm thinking is "good luck with that!"

last time we were at her pediatrician, the doctor wanted to do a simple swab of her throat to test her for strep throat. it took 4 nurses, plus the doctor, and me all holding her down for about 20 minutes just to get the swab far enough back in her throat to test her.

so, as you can imagine, i was more than a little concerned about how this second dental visit was going to go.

so concerned that a day or so prior to the appointment i got desperate and asked one of the nurses at our pediatricians office if she had any tips/suggestions on how to calm a child with sensory and anxiety issues prior to dental work because ashlyn had been worked up over it for weeks.

her response without hesitation was......."meds! but, i can send a message to her doctor and see what she suggests and if she's willing to medicate her."

knowing that the pediatrician has seen her sensory meltdowns in action, i didn't think there would be any hesitation on her part. and i was right.

next thing i knew, we were given dosing information and instructed to pick up liquid Valium at our local pharmacy to give to her prior to her appointment.

in the meantime, the doctor had a consult with the dentist and was told NOT to dose her with the valium. Oy!

*deep breath*

this is the kind of stuff i deal with on a weekly basis. between me, spidergirl and ashlyn it's exhausting.

trust me when i tell you....i thank God everyday that Doug is mostly healthy.

so, that brings us to the dental visit...
we showed up to find an overcrowded, very loud waiting room with instructions to take a number because their new system was taking more time than expected to get people checked in. oh.my. so, we politely asked them to come get us from the hallway when they were ready. she was already on edge so i took her to the hallway which was calm and quiet.

we looked through a highlight magazine, played games on my phone, took pictures on the camera phone and she texted daddy to tell him she was scared over and over. :(

i went to this appointment expecting to have nothing but a conversation and be an advocate for my daughter explaining to them her needs. i fully expected for them do not perform any work whatsoever and to be rescheduled for another day. but, the dentist she was paired with was the one who had talked to our pediatrician. she fully understand ashlyn's sensory and anxiety issues and wanted nothing but the best experience for her.

that's when i found out that sedation appointments were only scheduled for certain days thus the reason we were instructed not to give her the Valium. they did in fact have her best interest at heart.

after our conversation and them showing ashlyn how every little gadget worked, the decided that she was comfortable enough to allow them to "paint" sealant on her teeth.

when explaining every step of the process, they used her fingernail as a 'pretend' tooth and did everything on her fingernail as they would be doing it on her tooth. once she was comfortable with that, she let them repeat it on her actual tooth.

once they got her to that comfortable stage, they asked her once again if she wanted to try to have the other work done after breathing in their scooby mask. her answer was a firm....NO.

so the decision was made to schedule another appointment, with sedation, to complete the work. when they left the room to get us our appointment, ashlyn picked up the scooby nose to test it out for herself....no coaxing necessary.

in the medical field, the right doctors make all the difference.

she left there feeling super proud of herself. and i left there feeling like she had conquered the world.

instead of leaving frazzled and wanting nothing more than to pull all my hair out, we left the building walking hand in hand, skipping to the hospital playground to play before heading home.....with a smile on her face even.

huge victory.....that may seem so small to everyone else. these are the kind of days i live for. :)

and i'm deciding now that this story will have to be told in two parts due to some time constraints i have today. to be continued..........

6 comments:

  1. When I left the medical profession due to health reasons I was a Pediatric RN. I also worked as a L&D and public health RN. You are so right that with the right practitioner great things can be accomplished. I get furious at medical "professionals" who can't adjust their routine according to the needs of the patient. Then I need to remember there are good and bad people in every profession. You ARE a great mom and never give up on being the Patient Advocate for your kids and yourself! There are plenty of doctors, specialist, clinics etc out there. It might take more time than you want, but you can find the right one for you! Looking forward to the rest of your story.

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  2. Yah, Ashlyn! Hey, I don't think I would like that mask either, so she isn't alone! LOL ... but you left us hanging about YOUR test results... Oh, please let it be something sooo simple and soooo easy to take care of that you are laughing about it now! Hugs to you

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  3. Oh Tania, you've been in my thoughts and prayers. :( Stay strong!!

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  4. I am so happy and glad that your visit with the dentist went so well. Having the right people around who knows how to deal with your special daughter is so important. I am glad that you took that picture with her and the mask on, it will be a great reminder that it wasn't painful and that she does look silly-cute with it.
    I had a lower back fusion. I am glad I had it done..no more back pain then 5 yrs go by and I can't work anymore because now i can't left anything heavy..nothing over 5 or is it 10 lbs, I shouldn't be twisting, bending and I need to sit and stand as I feel the need and working as a nurse, that is all that I do. I wished my Dr had told me after the surgery not to return to an active nursing duty as a nursing home nurse but to go to office nurse work.
    My prayers and thoughts are with you as you go through your pain and struggles. God is faithful.
    {{{{HUGS HUGS}}}}
    thanks goodness for wonderful husbands!!

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  5. You are so right about the right doctor making all the difference. I was blessed to find a dentist in my area who deals with special-needs children. I don't know if you consider A to be a child with "special needs" but it took me a long time to come out of denial and use that term, and now I have found that it adequately describes Lily's sensory issues and when I label it as such, people tend to treat her the way she NEEDS and DESERVES to be treated. AT amusement parks (such as Six Flags and Disney World), the Sensory Disorder diagnosis qualifies her as a special needs child and we are given special passes to avoid waiting in lines (which otherwise would have resulted in meltdowns). I am not sure if you are in the same place as I am right now, but I hope some day that you are, and that you can find the "blessings" that this diagnosis can sometimes bring. God Bless you, Tania!

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