If you are in Utah, please take a moment to write our reps

The medically complex children's waiver is apparently a pilot program which will be voted on this summer. We really really need it so if you live in Utah please email Evans Vickers and ask him to vote to keep it. If you live in southern Utah please email Brad Last AND Evans Vickers. And make it sound really important ;-) We would really appreciate it. Here is a copy of the email I sent yesterday.

evickers@le.utah.gov

blast@le.utah.gov

 

To whom it concerns,

Meet Sophia :-) She is our beautiful, happy, sweet, wonderful, about to be one year old girl :-) I am writing you about the Medically Complex Children's Waiver.



Almost a year ago I went into labor and we expected a healthy baby. With 5 kids at home already, she was decided to be the last one to complete our family. We thought that we would come home with our bundle of joy, and that our lives would be perfect as well as complete. While it is complete, it is not perfect. Having so many children already, we were nervous about the baby stage (particularly sleeping) but knew it wouldn't last forever and looked forward to her growing up so we could enjoy family life together.

When Sophia was born she needed a breathing treatment right away. Then she had trouble eating. When she was 3 days old they did an MRI and we found out that she has a rare genetic condition called pontocerebellar hypoplasia. Her brain stem didn't grow right. Because of that she would be a perpetual infant. So that baby stage we were worried about, indefinite.....as long as she is alive :-( We were also told she would not likely see her first birthday.

I don't pretend to know other people's troubles, but near as I can tell this is pretty much a worst case scenario. If there was anything that could be underdeveloped, the brain stem is the most difficult. It is the mainframe. It controls everything from voluntary to involuntary functions. And it can't be grown or transplanted. Her complexities are indescribable, but let me try.

Sophia is complicated to say the least. B/C the suck swallow breathe reflex didn't develop she is 100% gtube fed. All of her additional problems are neurological as well and there is no discernible rhyme or reason or pattern. Anyone who cares for her must be comfortable with the following:

-continuous Gtube feedings and administering medications.
-Suctioning her airway

-Deep nasal suctioning (up the nose down the throat)
-Administering breathing treatments
-Timing her seizures and knowing when to give meds
-Counting her respiratory rate
-Watching for labored breathing
-Listening for signs of pneumonia (she's a constant pneumonia risk because she has severe reflux and she aspirates daily)
-Recognizing and waking her from apnea
-Holding and comforting her when she's dystonic (uncontrollable movements which can get violent and stressful). Knowing when to give meds.
-Emergency procedure when her feeding tube falls/or gets pulled out
-Placing her oxygen and knowing the machine
-Placing her pulse oximeter and monitoring HR and oxygen
-Rousing her when her HR suddenly drops
-Watching for silent reflux/silent aspiration
And I'm sure I'm forgetting something...

Needless to say she is complex. Enter the Medically Complex Children's Waiver! When I heard about it she was just a few months old. We were waiting at Primary Children's for an appointment and an off duty nurse noticed all her tubes and wires and mentioned it to my husband. I was fried and overwhelmed and the paperwork seemed insurmountable. But with help I muddled through and thank goodness I did. Here is the relief it provides...

-The financial relief is huge. Our max out of pocket on our private insurance is $15,000.00 a year. She was in the NICU for two weeks so needless to say. we hit it. In April we applied for the MCCW open enrollment and we are so relieved not to have to pay that $15,000 this year.

-The Respite Hours. 13 hours a month an RN comes to give us relief. We primarily use the time for therapy, temple worship, date night, and outings with our other children since we are often home bound.

-The (possibility of) Night Nursing. I say possibility of because we haven't yet received it from MCCW, but we are working on that. So far her night nursing has been paid for by a charity, but that charity is not limitless and it appears to be drawing to a close.

Along with everything else the brain stem controls sleep cycles. Sophia sleeps 6 hours a night when she is healthy. Which is only about 50% of the time because her immune system is fragile and she catches everything. As an example she has been hospitalized twice for a rhinovirus (common cold) so mild, that the hospital staff said the rest of us could have it and not even know it. When she is sick the increased seizures, movement disorders, reflux and respiratory issues make it difficult to sleep at all.

So those are the most important ways that the MCCW keeps us functioning. Keeps my husband able to work. Enables us to mentally, physically, and financially handle the demands of our dear daughter.

The majority of babies like Sophia are stillborn. The next majority don't make it past a year. Sophia's birthday is coming up in a few weeks and recently she did not re-certify for hospice :-) It's an incredible feeling to have her beating the odds like this and we will take her :-) Alternately it's scary thinking of having a perpetually complex infant. I don't know what we would do without the Medically Complex Children's Waiver. I really don't.

I understand this summer there is some kind of vote coming up with the MCCW. I urge you to vote FOR it. Thank you for taking the time.