I was looking back at some old posts seems people read my blog even from years ago... I was being bad and looking at my stats. A old post was suddenly very popular, which got me reading my blog. Ha ha ha this really is my online journal you're just reading my musings.
I was looking at a post from 2 years ago where I was starting the process of Sweet Potato's medications becoming her responsibility. I made a side note that it would probably take 3-4 years to get her to a place of being responsible. The process hasn't stopped I'm still working on this area in her life. She takes quiet bit of medication, and much of it makes her feel uncomfortable. The salt water she breaths in really helps her cough deeply.. but who wants to cough deeply for 20 mins a day, twice a day? Ow!
I'm seeing that I really did set a reasonable expectation in my blog post and it was a good reminder to read it today. My expectation was 3-4 years before I would be able to be at the "trust but verify" stage of watching over her medications. We still have months where I go to switch out her inhaler and its got a few to many doses left. (Yes bad mommie! no doughnut for me!) But 2 years into it I am seeing her ask for her medication, going and getting it out of the closet where it is kept on her own. I'm even finding her cleaning up all the plastic vials every once in a while. Tidying her area without being asked. All good things.
In fact at this time there is no "FIX" for her disease. Only lots of hard work, being uncomfortable, taking medications, eating right, exercising and sadly not being able to do all the things you want to do.
Sometimes our children just take longer to process things, we as parents want to Fix it right now, make it better right away... kiss the boo boo and all is well... but our children have deep hurts, a kiss sure helps but it won't fix it.
Showing posts with label Primary ciliary dyskinesia. Show all posts
Showing posts with label Primary ciliary dyskinesia. Show all posts
Monday, April 13, 2015
Wednesday, October 1, 2014
Medical Update
For a year now Sweet Potato's Lung specialist has wanted me to take her to see his mentor in St. Louis. But he didn't want her traveling north in the flu season and well we were swamped last summer. So I thought this summer we might travel to get a second opinion... he offered 3 other places one of which was children's in Boston. Well my sister lives in Boston and just as I was starting to put the bits and pieces in place, a news story broke about Children's in Boston. The story is about how Children's tried to terminate the "out of state" parental rights. A bit of digging showed me this seemed to be a habit of theirs and My trip to see my sister and see a specialist was off. Instead we started to plan a trip to St. Louis to see the guy our current doctor really wanted us to see. So we made an appointment which was months away because he's a specialist. :-)
But we hit a road block, due to rising costs of private health insurance our ministry no longer offers it as a benefit. Shifting over to the ACA was fraught with glitches. We easily spent 80 hours on the phone or website just trying to get past a yellow box. Talked to numerous rude and unhelpful supervisors and experienced just about every dialect in american english. We made at least 4 different accounts trying to work around the glitches... We deleted and started again as many as 35 applications. If not for the help of the company our ministry made available to us, to advocate and walk us through it, I'm not sure we would be insured right now. It was only after the wonderful young man that was helping us, insisted on our right to file and appeal did we actually get someone at the ACA to help us. The woman at the Appeals office confide in me that she has over 400 appeal calls to do a week. That is crazy as she easily spent 3 hours on the phone with me as - yes you guessed it we created a new application and re-applied. 5 hours after we got a helpful supervisor I was informed by her that she managed to get "around" the glitch and we could sign up... But I had to send 4 document to be verified.
We had been without insurance for over a month.
While we were dealing with this I had to keep pushing back and rescheduling Sweet Potato's appointment. I'll leave out the Yes she covered no she not, yes she is, no she's not, back in forth we had with the doctors office and my insurance company. I'm *still* not sure what bills we will see even though I did do everything the Dr. Office wanted. I have to applaud the billing department at Dr Ferkol's Office they were amazing and sweet. They just want to make sure she could be seen and we could afford it.
So after much paperwork, phone calls, dates moved we finally took the trip to St. Louis to see Dr Ferkol. Who was amazing, kind, informative, and a good educator. After talking with Sweet Potato and us, looking at all the tests they did in house he concluded Dr Lie's suspected diagnosis as being the correct one. Well he gave us a 99.9% chance Sweet Potato has Primary Ciliary Dyskinesia (PCD). http://www.pcdfoundation.org You can check it out at the website. It's a pretty rare genetic disorder. So we have let him enter her in his study, as Dr Ferkol is trying to find a less invasive way to diagnoise this disease and of course to study it.
We as a family are processing all the information he gave us and reading up on it at various websites. The good news is she is probably over medicated so she may be able to come off of some of them. The bad news is this is going to be a life long battle for her.
But we hit a road block, due to rising costs of private health insurance our ministry no longer offers it as a benefit. Shifting over to the ACA was fraught with glitches. We easily spent 80 hours on the phone or website just trying to get past a yellow box. Talked to numerous rude and unhelpful supervisors and experienced just about every dialect in american english. We made at least 4 different accounts trying to work around the glitches... We deleted and started again as many as 35 applications. If not for the help of the company our ministry made available to us, to advocate and walk us through it, I'm not sure we would be insured right now. It was only after the wonderful young man that was helping us, insisted on our right to file and appeal did we actually get someone at the ACA to help us. The woman at the Appeals office confide in me that she has over 400 appeal calls to do a week. That is crazy as she easily spent 3 hours on the phone with me as - yes you guessed it we created a new application and re-applied. 5 hours after we got a helpful supervisor I was informed by her that she managed to get "around" the glitch and we could sign up... But I had to send 4 document to be verified.
We had been without insurance for over a month.
While we were dealing with this I had to keep pushing back and rescheduling Sweet Potato's appointment. I'll leave out the Yes she covered no she not, yes she is, no she's not, back in forth we had with the doctors office and my insurance company. I'm *still* not sure what bills we will see even though I did do everything the Dr. Office wanted. I have to applaud the billing department at Dr Ferkol's Office they were amazing and sweet. They just want to make sure she could be seen and we could afford it.
So after much paperwork, phone calls, dates moved we finally took the trip to St. Louis to see Dr Ferkol. Who was amazing, kind, informative, and a good educator. After talking with Sweet Potato and us, looking at all the tests they did in house he concluded Dr Lie's suspected diagnosis as being the correct one. Well he gave us a 99.9% chance Sweet Potato has Primary Ciliary Dyskinesia (PCD). http://www.pcdfoundation.org You can check it out at the website. It's a pretty rare genetic disorder. So we have let him enter her in his study, as Dr Ferkol is trying to find a less invasive way to diagnoise this disease and of course to study it.
We as a family are processing all the information he gave us and reading up on it at various websites. The good news is she is probably over medicated so she may be able to come off of some of them. The bad news is this is going to be a life long battle for her.
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