I haven't blogged about the drama we're currently dealing with, because I just haven't had time. But to avoid keeping you completely in the dark (especially if we aren't FB friends), here goes nothing!
I got a call on Tuesday afternoon from our insurance case manager (if you are a challenging case, they give you a case manager. That's how you know you're a red flag!) and she told me that our nursing is going to be cut off at the end of February. When I asked why, she told me that she was told that since Abby had a chronic condition and wouldn't get any better, they couldn't just keep paying for nursing indefinitely.
There are a whole lot of things that frustrate me about the situation, but especially that the medical director at the insurance company is off-handedly labeling my child as one who won't get any better...as if she is comatose in her home hospital bed. No one from the insurance agency has ever met or even seen a picture of Abby. To my knowledge, they do not have access to her IFSP through our Infants and Toddlers plan, so they really have NO idea what Abby can and can't do.
Yes, she is "chronic." "Chronic" refers to her chronic respiratory failure diagnosis, not to her cognitive abilities. "Chronic" should not be a reason why she is ineligible for nursing care.
To explain our nursing needs a bit more, our insurance pays the night nursing and Model Waiver pays for our day nurse. We need a day nurse so that I can work and take Abby to her many doctors' appointments (I can't drive alone with Abby because someone needs to be in the back in case she needs to be suctioned.) We need a night nurse because Abby requires around-the-clock care and we do not sleep when we don't have a nurse. She has proven that she needs an alert and aware caregiver. It's one thing for Matt and I to split the overnight hours occasionally when our nurse can't come, but it's an entirely different thing to go with little or no sleep indefinitely!
Before you start thinking that we're just whining about not getting sleep and comparing us to the moms of newborns who do it all of the time...let me explain a little of what we might need to do during the overnight hours.
* Abby has decannulated (taken the trach out) herself in the early hours of the morning. Doing this without our knowledge could cause her to stop breathing.
* She has been having low heart rates every night for the last week or so and needs some stimulation to bring it back up.
* Her feeding ends at 3 a.m., when the bag needs to be run through and cleaned. The milk needs to be flushed through her gtube.
* We don't suction on a schedule, but just as needed.
* Abby often disconnects her feed when she is tossing and turning, causing milk to go everywhere in her bed. That needs to be cleaned up.
* When she is sick with a cold, Abby sometimes desats (her oxygen saturation levels drop) and she needs oxygen.
* As Abby proved with this last illness, she can get sick very suddenly. We may not have much warning that she is ill, and we need to be able to see her to read her signs.
Are you beginning to see why she needs an alert and aware caregiver??
When I got off the phone with our case manager, I shed just a couple of frustrated tears, pulled my big girl panties back on, and got to work writing our letter of appeal. I included specific reasons why Abby needs an alert and aware caregiver (similar to the list above, but with a whole lot more technical language!), and also put in a picture of Abby. I figured it can't hurt for them to see the girl they are labeling.
I also requested a list of the criteria they use to determine nursing eligibility. If a child who has a trach, is vented at night, has a gtube, and has required oxygen and a multiple night hospital stay in the last month is not eligible for nursing care, then I don't know who is! I have yet to receive this list, but you can bet I won't let that go. :)
Our appeal went in Tuesday night and was on the medical director's desk on Wednesday morning. We should hear something between Wednesday and Friday of this week.
In the meantime, I have contacted the Maryland Insurance Commission to file a complaint against our insurance company. That complaint went in on Thursday. I'm hoping that our appeal will be approved and that the commission won't need to get involved, but I wanted to get a head start on it just in case.
Abby's pulminologist has also agreed to speak to the medical director on our behalf during a peer-to-peer evaluation. She will share with him the reasons why we need to have night nursing.
This all came about during the week that Matt was gone almost the entire week (he was home about 36 hours!) and I was trying to study for the Praxis exam I took on Saturday. Needless to say, I really wasn't looking for any more additional stress! But, I'm hoping that the work I've put into writing the appeal and filing the complaint will pay off.
Abby has jumped over lots of hurdles in her short little life, so this is just one more. If we lose our night nursing, I think I'll invest in a fancy new coffee maker. :)