I don't know if it was the weather, or what, but today I was in a funk. I spent the majority of the day on hold with the phone company, the insurance company, and the home medical company. This gave me the opportunity to make one gigantic sized "to do" list that includes everything from getting the dog neutered to calling REA about our yard that they tore up but did not re-lanscape to finding a job.
Note to self: If the list goes missing, I will know that the dog ate it.
Being on hold for the greater part of the day also gave me alot of time to reflect on the changes that we have experienced in the past three plus years. We've somehow progressed to a family with:
twelve times the puke,
half the income,
twice the bills,
three replacement dogs,
6 cats quished on the highway,
two new high efficiency appliances (for all that puke),
two cars that need to be replaced,
and,
a kid with more pieces missing from his body than the average puzzle.
I am finding myself more and more irritable with these changes lately. It isn't because things have gotten worse for Benji or anything. In fact, he is more stable now than he has been for the past year. Or for the past three years. I think it is more related to the fact that I have time to stop and think.
I have literally spent most of the past three years at a hospital while trying to balance work and Benji. Most nights inpatient with Benji I have spent huddled over a light in the corner of the parent bed area of the room while catching up on reports, working on staff schedules, balancing the checkbook, paying bills, pouring over EOB's etc.
In contrast-
During the past four or five stays I have.....read books, painted my toenails, read more books, colored with my child who refuses to stay in the lines, painted my child's toenails (he asked!) and spent time writing. When I have run out of thoughts to write about, I have grabbed another book out of my bag and read some more.
On a side note, I recently read a book written by the parents of a child with VACTERL. I found myself howling with laughter at 1 AM with a pillow over my head, tears streaming down my face. The nurse came and looked into the room. I can only imagine how she summarized her shift in her documentation. Something along the line of "Benjamin's mother appears to have lost the last shred of her sanity while reading something on her Kindle." I am pretty sure that in the near future at least one of Benjamin's doctors will mention a trip to a mental health spa for me. I may take them up on it...as long as I can bring my Kindle.
And, if you are a person who is stuck back on wondering why in the world I was laughing over a book about a child born with serious and life threatening birth defects, then you are obviously not the parent of a a child born with serious and life threatening birth defects. If one has not lived it, I do not believe one can understand it. I laugh because it is the only way to cope. VACTERL children occur in every society, every economic class, every area of the world. Yet all parents of VACTERL child have essentially the same experience no matter which body systems of their child are affected, where they live, and how much they make. The writers of the book are a Hollywood actress and her writer husband. Yet, their experience is one that has nothing to do with their level of status and popularity. I am considering giving copies of the book to all of our relatives for Christmas though.
So back to the time on hold today....
I found out that it is somewhat difficult to port your phone number from one company to another. They kind of make a person jump through hoops. Perhaps this is just because I bought the phones off of the website rather than in the store. If I can't get the issue resolved ASAP tomorrow I am going to break down and just get Glenn and I new phone numbers. It will be good for the kids to have to memorize yet another new set of numbers, right?
I also found out that insurance companies (ours in particular) will do anything to save their dollar. Correction, I already knew that but apparently I need reminding about once a month! More importantly, when backed into a corner they will stall you out until your policy expires. The company is now denying that they said that our home medical provider was in network. They were none too pleased when I called back and requested the tapes and transcripts of my call and more importantly the preauthorization call of the medical supplier. Yep, when a person calls and is advised that a call may be monitored for quality, that is becasue it is being recorded and archived. The supervisor tried to deter me my stating that I would need to know the exact date of my call to them.
Well, of course I had the date I called, I'M A FREAKIN SOCIAL WORKER- I document everything!
Okay, not actually everything. That would be impossible on Benji. But a great lady/parent of a child with a cleft palate/wife of a prosecutor/super tough boss I know named Marigail Mullins taught me to at least document what is most important. And then remember the rest in your head to CYA when you discover that you forgot to document. Plus, I know how to access my cell phone statement online to retrieve dialed calls. Somewhere in Kentucky, Marigail is so proud of my resourcefullness!
The insurance supervisor proceeded to ask me if I work in the insurance field myself. I told the truth and admitted I am "just" a housewife and a SAHM. I then proceeded to tell her how one of those kids that I am a SAHM to is a two million or so dollar baby. My rant included evidence of how if I didn't argue with her insurance company on a weekly basis my kid's only kidney would be toast, his spinal cord would still be tethered so tighly that it could sever itself and leave him paralyzed, his head would still be tilted 45 degrees to the right, his bladder would have exploded, etc, etc. I will admit that I was a bit dramatic, but I did not once drop the fbomb. I so wish that every VACTERL parent could have been a fly on the wall as they would have been flapping their little wings to encourage me!
I honestly believe that the insurance would prefer that our very expensive child just die during one of these episodes of hypoglycemia. They are losing money hand over fist on him. The insurance premium is $1100 per month. He has had seven admissions in 9 months for hypoglycemia. Plus, sometimes he is admitted for other reasons and ends up having some issues with his blood sugar to boot., Coventry Health Care has spent over $400,000 on treating his hypoglycemia inpatient. This does not include the trips to the clinic, test strips for his meter that cost around$300 per month, and the therapy that they will pay in the future for a child who is repeatedly traumatized. Yet, they will not approve a $1500 monitor that would forewarn us as parents, who have proven more than once that we are not trained emergency room physicians, to DO something before we find him having another seizure with his blood sugar too low to read on his current monitor and have to rush him to the emergency room.
My ex-husband is an actor. Perhaps I hung out in the theater too much with him? LOL.
The supervisor wins though- it will take 60 days to get the transcript and our policy terminates in 25 days. This out of network home medical supplier is the only supplier for the pediatric monitor approved for Benji. The insurance company will not give an exception to have it supplied by an out of network provider. Glenn and I will have to figure out the way to cover the hefty cost of this monitor. And we have to pay up front being we are paying out of pocket- like that is going to happen.
I'm pretty sure the supervisor wanted to drop some fbombs in her response to me, but was carefully choosing her recorded words.
Perhaps I could sell one of my kidneys? Okay, now I'm taking the drama too far.
Perhaps I could call Marigail in Kentucky and have her and her husband deal with this insurance company- which also happens to be located in.....Kentucky?
But in 60 days I will have the transcript of the two calls where they lied. Maybe I will request the transcript of today's call also and send it to my speech teacher from high school. I feel confident she would be impressed with my lengthy monolouge on the trials of being a mother to a multimillion dollar child.
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