Monday, December 30, 2013

Pharmacy problems....


Today was one of those crazy days....trying to cram a lot of things into the day.  In a nutshell I got all my/church paperwork organized, did the final church banking stuff for the year, almost had two car accidents thanks to some snowbirds (Maine and another state that I couldn't tell what the tag was)  picked up some meds, was on the phone for an hour trying to deal with the company that we bought our tv from, worked out (HOPEFULLY) Selah's Tobymixion situation (by being on the phone with a local pharmacy & on the cell with the mail order pharmacy we are made to use)  sold 15 more of our old church chairs (while dealing with the pharmacies) cooked a good Italian meal, got ALL the laundry done, and helped a friend.   WHEW!  

I had several ideas for a blog tonight, but can't get my mind around it like I want to. 

Selah's situation with her medicine, Tobymixion, or Toby as we call it or the "miracle" drug.....is beyond frustrating.  I started on Dec 20th trying to get it sorted out so she could get it on time, which was Dec 27th.....then she got sick and the doctor ordered it EARLY (as in ON Monday Dec 23)....we still don't have it.   Since Jon is a state employee we have to go through Medco as our prescription plan.  They require that if a drug is one used monthly, it has to go through their mail order plan.  Well we had gotten this waived before but now they aren't considering the wavier since they have the Toby in a different category for a special medicine.   Problem is.....until today the orders were just sitting there.   It's not like you can go to a pharmacy and just sit down and wait until it all gets straightened out.  You have to call, and always get a different person who rarely cares.  Today one of the supervisors really helped us out.  She even called back and got a wavier so we could get Selah's medicine tomorrow  (couldn't get it in time today)  but if we had waited the earliest we could have gotten it delivered would have been Friday.  Selah is doing alright but she has a lot of mucus and is requiring a lot of suctioning.   The Toby keeps her trach/airway clean and dries her up.  It has made such a difference in her life since going on it late last April.  I just hope we don't have this big of a fight EVERY single month.  

The hardest thing about being a mom to special needs kids are the FIGHTS....and long waits on phones, in offices....   You have no idea until you've gone through something like we have lived for the past 10 years.   I never really thought about children/families with special needs until I had Sam but I guess if I did, I'd thought they would have all kinds of agencies to help & assist.  I don't mean just financially but emotionally and practically also.  I assumed when Sam was born/diagnosed .  I would have some guidance.....Oh I was so silly & naïve....  I had no idea what was ahead......  but I knew after Selah's accident ALL that was before me and it scared me so bad because I knew how hard it would be....  I remember being in the hospital in NY and just crying about leaving because I knew how hard it had been with Sam and how hard it would be with Selah.....unfortunately I have not been disappointed......

I don't know how parents who are young, uneducated or reluctant to deal with things handle ALL that is needed with a child with SNs.  It's a never ending fight....right now, for some reason Selah's trach covers didn't come with the supplies last week so she is down to just a couple.  Once they get mucus in them, they have to be changed out.  But they won't come till tomorrow.  Thankfully our nurse Rose really works the phone on a lot of these things and our nurse Aaron REALLY worked hard today calling and dealing with things for me.  He was so annoyed for us, I heard him talking to the one company and just about cracked up....he was more straight forward than me LOL!  But the nurses hate to see the ongoing fights we have JUST to take care of Selah. (and the other little ones)   We have a good insurance and prescription plan but it seems that our stuff is so specialized in falls into the 'cracks" of the system. 

So I have to admit, I am rather short tempered with people very easily. 

I look at all of the situations we deal with for the little ones, whether it is medical, medicine, nursing, diagnoses, school.....whatever it is.... and think back to when I worked as a probations officer/supervisor.  I DID my job and I did it without trying to make someone's life a mess and REMEMBER I was dealing with CRIMINALS, not little handicapped kids!  I can't imagine what I'd do if I were trying to help little people like my kids!  I'm not saying that because I'm so perfect but I would have loved trying to do things for families like ours', rather than the criminals LOL!  And even with them, I tried to get them the best help I could find and go the extra mile.    I think that is what makes me so furious is I look at our situations and see how easily it could be handled, so it all wouldn't be such a burden for me to deal with.  There is no reason Selah shouldn't have had her medicine at least a week ago.....  even with the waiver, I have to drive 2 hours round trip to get it for her and I am quite willing to do that but WHY does every freaking thing have to be so stinky hard??????  It's so overwhelming.....

Ok end of my whiny rant......

Well tomorrow night we have a little party planned at our house:)  It will be good to be with family and welcome in 2014....  Hope you all have a good day tomorrow and a fun time tomorrow night.  Please stay safe!!!!   I hope and pray that 2014 will be a great year for you and yours!



6 comments:

  1. Just keep hanging on to the Lord....I wish I could say a ton of things to help you out, and a scripture comes to mind, but I can't remember the chapter and verse...Even looked in my concordance in back of Bible, and still i isn't popping out at me...So, just keep hanging on to
    Jesus....
    Love from NC

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  2. Just keep hanging on to the Lord....I wish I could say a ton of things to help you out, and a scripture comes to mind, but I can't remember the chapter and verse...Even looked in my concordance in back of Bible, and still i isn't popping out at me...So, just keep hanging on to
    Jesus....
    Love from NC

    ReplyDelete
  3. I worked in my eye dr.'s office for 3 months, and was amazed at how MEAN one has to be to get needs supplied from providers for patients. But it really was the only thing that plowed through the maze of paperwork, or dealing with a different person each time (out of dozens) one called. It definitely takes a lot of persistance and creative crankiness...

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  4. Hi Yvonne,
    I was wondering if there is another name for the "wonder drug" that you use for Selah? I tried to look it up because i have a child that will quite often end up in hospital because of chest infections or stuff to do with her trach but could not find any information on it. Thanks, Cindy.

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    Replies
    1. hi Cindy.....I spelled it wrong. it is spelled Tobramycin. We get it in the nebulizer form. It goes in her nebulizer just like a steroid treatment and she breathes it in. Hope that helps! It has CHANGED our lives!!!! Selah hasn't been in the hospital since she went on the Toby in April! good luck!

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