Today, I got the phone call that I've been dreading. I knew it was coming, just had a feeling, especially after the first phone call a few weeks ago from our home health agency (excerpt)
HHA: We have a few questions for you from your insurance company.
Me: Okay
HHA: Does the child go to school?
Me: Do I have to answer that?
HHA: Well....(long pause...I don't think he knew how to answer)
Me: 2 1/2 hours a day 3 days a week
HHA: Does the private duty nurse attend school with him?
Me: Yes (in my mind, I'm thinking, "uh-oh" here we go, we're going to lose our nursing hours)..and the conversation went on a few more minutes.
So, today I got the call from the home health agency that our insurance is inquiring into our nursing hours, and wants copies of all the nursing notes. The doctor at insurance wants to know about Toby's apnea. How long do his episodes last? What is his oxygen during the apnea? Both of those are actually really stupid questions - if the doctor had any clue, he wouldn't ask those questions. Toby's on a ventilator for his apnea, so when he's sleeping, the apnea doesn't occur - and his oxygen doesn't drop...because the ventilator is breathing for him 12 bpm.
Anyway, they are starting to question whether they should be covering our hours, especially when Toby goes to school. Right now our private duty nurse goes to school with Toby because he has skilled nursing needs, i.e. a trach, suctioning, and a ventilator. If the trach falls out and somone isn't there, he could die. I'm wondering if they are questioning the nurse going to school with him because it's supposed to be "HOMECARE" (I guess that means Toby never leaves home, even for doctor's appointments). We currently have approval through the end of April.
For the last 4 years, our insurance has been covering most of Toby's nursing hours (not all); the rest are covered by the Ohio Home Care Waiver (Medicaid Waivers). I should clarify that if insurance stops paying waiver should pick up those hours (hopefully), so I'm not fearful of that, but this is what I am fearful of:
In the past two years, they passed new regulations. When a child on the waiver goes to school, the school has to cover the hours (because the school is allowed to bill Medicaid, and it's considered double dipping). Sorry, if it is confusing (I don't understand it all either). So our nurse, the one we know and that is trained for Toby might not be able to school with him.
Bottom line - I'm not letting my child with a trach get on a bus by himself - with no nurse. Sorry, I'm not sending him to school when a nurse isn't close by if something happens. Most school nurses have no idea how to suction or put a trach back in, and usually rotate between buildings, so this could be very dangerous for Toby.
I know that it sounds like I'm looking at the glass half-empty; I'm assuming that insurance stops paying, that waiver says we can't send our nurse to school with Toby, but all of the above could happen, and I just don't like the fact that we are headed down that road - that insurance is questioning...it's what I've been dreading.
After the phone call with the HHA, I began making dinner and had this conversation with the Lord.
Me: Lord, what are we going to do?
God: Trust me...
Me: But we might not know until April if we lose these nursing hours and if things will change, how can I stand the next two months with things so unsettled?
God: Trust me
Me: I don't like it when things are so unsettled, when there are no guarantees.
God: There aren't any guarantees, Carrie - but I ask you to trust me
Me: No guarantees? But, I'm NOT comfortable with no guarantees; I need things perfectly planned out.
God: I didn't call you to a life of comfort and things under your control - I called you to trust and walk by faith, to let me be in control...Will you trust me?
Me: Yes, I'll trust you
God: By the way, there are some guarantees...
Me: There are?
God: Yes, did you forget? My love is guaranteed; Heaven is guaranteed; I have a perfect plan, I work everything together for good to them who love God; I love Toby more than you love him; I have your best interest in mind; My promises are guaranteed; I am faithful, I will be here for you - even if you feel like the bottom is falling out, or when things change(I know how well you do with change...) Will you trust me?
Me: Yes, I will...I'm going to try to daily put this at your feet and wait (which I'm not very good at)..trusting...you'll help me, Lord, won't you?
God: Yes, because I guarantee I love you and I guarantee I'm always trustworthy.
So, pray - pray that God will work something out; the doctors will see that we still need these nursing hours, but more than that - that I will continue to trust in the middle of uncertain circumstances.
