Ok, so this blog is supposed to be a place where I share blessings and joys and otherwise happy events. But I have to break that rule for just a moment to ask...no beg...you to pray for us.
Peyton is medically fragile with multiple special needs. You can check out her site HERE. Around May of 2010, Peyton qualified through Medicaid to receive skilled in-home nursing services, starting at 56 hours a week. Eventually over the course of a few months she began repeated respiratory infections, causing her to wind up in the hospital 10-12 times over a one year period. It once got so bad that we got to the point of having to decide what to do "if"... So her hours were temporarily increased in the fall to 72 hours and then bumped up to 84 hours a week. We were with a nursing agency who couldn't even provide 84 hours a week, so don't think we were riding free and easy with 84 hours. We switched agencies and finally just got 84 hours a week when our hours were cut in July to 70 hours. This was a HUGE blow. Within the month, Peyton wound up back in the hospital for the first time since November with one of her old respiratory illnesses.
You see, this is the thing with Peyton. It's not her neurological problems that will be her downfall, nor is it her hyper-flexibility or low muscle tone. It's her heart and her lungs. Since these illnesses, she has what doctors describe as an "impressive" heart murmur. Any doctor who listens to her asks me if I know about it and if she's being seen for it, it's THAT noticeable. Her base line measure of "health" (I use that term loosely) is worse today than it was before she went in the hospital a few weeks ago. A few weeks ago, it was far worse than it was a year ago before all the illnesses.
Peyton cannot sit, stand, walk, crawl, control her head 100% well, and so on. She requires CONSTANT supervision. When a nurse isn't here, I am with her, which means all summer long, my other daughter, Moira, is being left out. For two YEARS I have slept in Peyton's room - initially because of seizures, then vomiting constantly, then the constant need to be suctioned (which is still the case) and now because she is on bi-pap and could wake up and start screaming. If she isn't suctioned immediately, she could aspirate. Aspiration could lead to pneumonia could lead to death. When she's on a safety mat, she can roll or scoot and she will wind up off the mat. She's also hooked up 24 hours a day to a feeding tube. She uses a stander, but needs to be watched like a hawk because she throws her arms back and her head isn't 100% stable. She dislocates her hips, shoulders and knees ALL the time, sometimes getting stuck and requires immediate attention to work it all out. She is on multiple meds. She gets meds 14 or more times a day. She hasn't had a seizures since November of 2009, but she could have one. She gets her limbs caught in her hospital-style crib rails. She's just so flexible, she puts her arms or legs through and can't get unstuck. She could break a limb in the process of even me trying to help her out. She wears diapers still at age 5 with no hope of ever potty-training. She has a tendency to get bad diaper rashes from time to time which require medication. Her bedroom/bathroom look like a hospital supply room.
I have Peyton (5) and Moira (7). I can't even begin to describe our home life, but there's more to what goes on here than you might imagine. We have no family in town. We have friends but most people, even some friends, are hesitant to get involved because our situation is so foreign/scary to them. When the nurse isn't here, it's me taking care of everything.
Ron and I went on our first weekend vacation in four years at the beginning of May because we had the 84 hours to cover round the clock nursing. Even with 70 hours, it means we get 7 day a week coverage when nursing schedules permit. Even with 70 hours a week, something like this getaway might be arranged in the future. With 40 hours a week, I can kiss my weekend coverage goodbye. Ron and I will likely not be able to go to church together anymore....unless I want to sacrifice a weekday of nursing coverage. It means 8 hours a day instead of 10 or 12. I can't work because of Peyton - if anything were to happen (hospitalization, or illness), I need to be available for her. But with only 40 hours a week, having a job would now be out of the question!
Date night???? I would have to look up the definition. I don't know what that is. That never happens. And that's with 70 hours a week. It probably won't even be on the radar with only 40 hours.
Right now, a 10 hour shift covers usually from 12p-10p. We like to have the nurse til 10p because it is a real struggle to get Peyton on bi-pap. Because of bi-pap, getting Peyton to sleep means the whole bedtime routine for her takes at least an hour. So if we have no nurse, I'm ignoring Moira or allowing her to stay up far too late til I can get to her. Once bi-pap is on and Peyton is asleep, she needs monitored because she could wake up and start screaming, so I don't spend much time outside her room as it is.
Family time???? Guess what's going to suffer. There will be no weekend anythings if we have no coverage. Peyton isn't really well enough to travel and even if she were, we'd need a U-Haul to pack all her required equipment into just so she could be with us. She still has ongoing respiratory issues, so taking her out of the house is not really a great idea. Her schooling is even homebound for this reason.
I am SO upset right now. I just broke down. I am trying to be so strong in my faith through everything, but I just don't get it. Every single time things start looking decent, a bomb drops. We finally got 84 hours of nursing staffed and were cut to 70. I'm personally doing much better emotionally (I should say I was because I'm not now!) and in general a happier person. Ron and I just talked about this last night! Then BAM hours are cut effective Sunday to 56 hours and then in two weeks to 40 hours a week. The case manager says I can't fight it. It is what it is. Really?? The goal is to keep Peyton out of the hospital. As soon as they cut to 70, Peyton wound up in the hospital. Coincidence?? I told the case manager that they can expect to be paying for many more hospital stays. I know Peyton's life-span isn't going to be a long one, but I am furious with the South Carolina government right now for taking her non-fiscally-essential life into their hands and deciding that it isn't worth the effort to try to make as comfortable as possible, to develop her to the best that we can, or to give her the best quality of life we can give her for whatever time God has destined her to be here. Or is this all part of God's plan? After all, her end was determined before she was born, as was each of ours.
So, I need prayers. I am so upset right now. Peyton needs prayers more than you can imagine because it is her little self that is going to suffer because of this. I am only one person and I can't do everything she requires and take care of everyone else in my family too!
I know I should thank God for these trials, but I think I need to wait until the flood of tears stops flowing. I know He is loving and merciful but I don't understand why these things keep happening to us. Does He not think she is worth helping?? I know that is ridiculous to say, because she is. But it doesn't jive with what's going on here on earth.
Please just pray.