Monday, April 12, 2010

Help Is On The Way!

In case you hadn't had the opportunity to read my latest Caringbridge update on Peyton, I am reposting some amazing news here as well! To see the whole Caringbridge update, click on the Caringbridge logo on the right side of this blog and it will re-direct you to Peyton's site.

We had some fantastic news last week. To back up a bit, recall that we had done the mass quantities of paperwork last year to get Peyton qualified for the special medicaid. There are additional "waivers" that she can get on which will give her additional services not covered by the basic medicaid that she has. We got the form to fill in for the Medically Complex Children's Waiver (MCCW) a while back, but between one thing and another (illnesses and hospitaliza
tions), the paperwork never got done and we had, in fact, missed the deadline the person at the state put on the form. After Peyton was in the hospital for 11 days in January/February and had surgery in February, we decided we REALLY need to get on that again. I called the contact person and she said if I could fill in that form and fax it back to her ASAP with a list of all her doctors, she would get it expedited for us. I did that maybe about a month ago. I received a call from a woman who needed to come out to the house to ask questions to assess Peyton's "level of care". She actually was the same person who came for the same purpose for the basic medicaid. The MCCW requires something similar, so out she came again. She came out the week before last. She didn't indicate whether or not Peyton met the level of care for the MCCW, but given that she did for the basic medicaid, I was pretty certain she'd qualify. Early last week I received a call from a nurse who wanted to come out to enroll Peyton in the MCCW!! She originally scheduled the meeting for Thursday of this week, as she has to come from out of town. However, later in the day she called back to say that she would be in town on Thursday of last week and could we meet then instead. Sure!!

The nurse came out on Thursday last week and was here for well over an hour going through all the paperwork to get Peyton enrolled in the MCCW. So, now you're asking "What is the MCCW??" Well, first and foremost, Peyton qualified for nursing care!! Note, not everyone on the MCCW will qualify for nursing care. I figured she might get a lower level nurse and not an RN; however, she qualified for an RN!! This is because of her history of seizures and the fact that she has the central line. I am not sure yet how many hours per week she will qualify for (should hear Monday on that), but one place I spoke with said it could be 40, 56, 80 hours per week. Could be less, too, I suppose. I have no idea what I will do with myself if she gets even 40 hours!! Peyton will also qualify for a box of diapers, wipes, incontinence pads, and gloves each month. The diapers won't be enough for the month, but it's one less we have to buy ourselves! She is also switching over our durable medical equipment supplier to one that is apparently more reliable. In the interview process, I was absolutely astounded at what I learned about how often our supplies for Peyton need to be changed out (suction catheters, pieces for the suction unit, nasal canulae, nebulizer tubing, etc. etc.). We DO wash these pieces but even still, what we do isn't nearly enough, especially given that the pieces aren't being replaced with new ones. Let me state that we do what we have been told to do. Not one doctor's office EVER (in 3+ years...going back to Houston) set us up with a recurring prescription for MONTHLY supplies of everything that we use. The nurse shook her head - but apparently we're not alone in this. In fact, it is possible that Peyton's recurring bouts with these viruses are resulting from the bacteria building up on her equipment! How's that for making you feel like a terrible parent?!?! Needless to say, Tina is getting orders from all the necessary doctors to get her set up with enough medical supplies to start our own clinic. In addition, Tina is going to get orders for a proper special needs stroller (as opposed to the cumbersome push chair she's had for a couple years - which is fine for school but not so great for outings) and a special adaptive seat for home - basically a little low to the ground wooden activity chair with padding and support as well as a tray. This could be used to sit her in to do activities or interact with other people. In the not too distant future, the MCCW will also allow for 16 hours of respite (per month) on top of the nursing care. The nursing hours are per week and do not roll. The respite hours would be 16 hours per month to use at your discretion - i.e. 4 hours each Friday, or maybe one 16 hour stretch where you could get away overnight. I am so excited about this MCCW. It's going to make a huge difference for us.

Since I wrote the above the other day, I haven't heard any additional news, but hope to hear something soon about the nursing care for Peyton. We are so excited about this news. It's going to be an enormous help to us to have this additional waiver for Peyton. I believe it's definitely an answer to some prayers we've had!

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