Save the MFTD Waiver!

The 2012 battle to preserve Illinois' Medically Fragile, Technology Dependent Waiver

The 53-Hour Shift

As part of Gov. Pat Quinn's budget plan, the state wants to cut $15 million from a critical program providing home nursing care for children on ventilators and other medical technology.  It's called the Medically Fragile and Technology Dependent (MFTD) Waiver, and it's the only thing keeping my eight-year-old daughter from living the rest of her life in an intensive care unit.
One of the biggest hurdles we have encountered in advocating for this program is that some legislators and officials see the MFTD Waiver as an optional Cadillac program.  They seem to think families are getting around-the-clock nursing care for free while living the high life.  This could not be farther from the truth.
Here's what it's really like down in the trenches.  And why we desperately need to save the MFTD Waiver.
My daughter is supposed to receive 120 hours per week of nursing, but because the state reimburses nurses so poorly, we cannot find nurses to fill all her shifts.  I typically have to provide her medical care for 60 or more hours a week, while also taking care of her two healthy siblings, continuing my work from home, and coordinating all of her care.
Unfortunately, nurses are impossible to find on weekends and nights, so I typically need to care for my daughter for 53 hours straight each weekend.  Yes, you read that right.  A 53-hour shift. 
I think it is important to note that nurses are limited to working 16-hour shifts, and in most facilities, shifts are limited to 12 hours in a 24-hour period.  As a parent, I have to do a shift that is more than FOUR TIMES longer than what most nurses are permitted to do.
I want to make it clear that we are not talking about a little bit of observation.  I do IV infusions, manage her ventilator, suction her airway as often as every 15 minutes, draw blood, place Foley catheters, give 50 doses of medication a day, give 5 nebulizer treatments a day, and give her 5 Respiratory Vest and CoughAssist sessions a day.  I also have to assess her vital signs almost continuously--heart rate, oxygen saturations, respiratory rate, temperature, and blood pressure.  My daughter is considered too complicated to even be cared for in a regular children's hospital setting.  What I am doing is ICU care.  With no training other than learning on the job.
The first 24 hours of my 53-hour shifts usually are not too bad.  All of us have pulled all-nighters at one time or another, and your adrenaline usually pushes you through.  It's not too hard to ensure all 50 doses of medications I prepare are dosed and administered correctly if I double-check them.  I can prepare her IV infusions without too much trouble.  Mistakes still occur--this weekend I found that I had put my kid's socks in the garbage instead of the laundry--but I can still function reasonably well.
The second 24 hours is another story.  By about 36 hours in, my hands usually start to tremble, which makes doing IV care or suctioning very hard.  Then memory lapses start to kick in.  Despite the fact that I color code all my daughter's medications and have extensive tables and charts to make sure I don't mess up, I still make mistakes out of sheer fatigue.  Usually the errors are minor--medications or procedures a little late--but the danger is always there, especially when your child takes large doses of Valium and can't breathe without assistance.  
It's also exceptionally hard to perform medical procedures while your healthy two-year-old is pulling on your leg, demanding your attention because you have spent every minute of the weekend caring for her sick sister.  Are nurses in the hospital expected to perform sterile IV care while also holding a two-year-old sibling?  While simultaneously helping a seven-year-old with his science project?  
Last weekend my daughter's machines--ventilator, IV pumps, and pulse oximeter--were alarming about every five minutes all night long.  I would lie down for only a few minutes on the air mattress on her floor--the closest I get to a bed all weekend--before waking up to yet another alarm.  Apneas, high respiratory rates, low oxygen levels, low heart rates, air in line, high heart rates.  
After doing two full hours of procedures from 1-3am, I finally collapsed on the air mattress.  
I slept through seven ventilator alarms.  
Luckily none were critical, and I always do wake up if the alarms persist.  But after more than 36 hours of providing intensive care level nursing, what can you expect?  According to studies, after only 17 hours of sleep deprivation, your cognitive function is the same as if you were legally drunk.
By about 50 hours my temper is extremely short.  I'm yelling at my toddler, who won't go to bed, while simultaneously crying, giving a nebulizer treatment, and monitoring my daughter's oxygen levels, which keep dropping.  
By the time relief finally arrives 53 hours later, I can barely stand up.  I repeat myself three times trying to give the nurse an update on my daughter.  I drag myself up to bed to sleep for the seven hours I have left before we need to be up at 6am the next morning.  I'm asleep in three minutes.
I dread the weekends, hoping that both my daughter and I will survive without any major mistakes.  Fortunately, right now I only have to do this two days a week.  If the MFTD Waiver program is cut or restructured significantly, I would have to do this every day or be forced to permanently hospitalize my daughter.  Since no one can do ICU-level care 24 hours a day, every day, without a break, I would have no other option but to hospitalize her permanently. 
What we can do is save this program without major restructuring or dramatic budget cuts.  It only costs the state about $15,000 a month to keep my daughter at home, but it would cost them as much as $100,000 a month or more to hospitalize her permanently. How much sense does it make to permanently hospitalize kids at a higher cost instead of letting them live out their natural lives at home with their families?  
This is a program that works, that literally saves lives, is fiscally responsible, and keeps families with their children.  While I praise Gov. Quinn for cutting the fraud and fluff out of Medicaid, I hope he won't make the mistake of cutting critical programs that ultimately save the state money.

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