First of all, Caden is doing pretty good. He is still refluxing everyday with no predictability as to when it will happen. Sherry has got pretty good at figuring out Caden’s expressions and she is able to remove his food from his stomach using a syringe on his g-tube to prevent reflux. This works pretty good, but you have to be right there when he is about to reflux in order to prevent it. He still goes through the motions of reluxing, but nothing comes up. This at least minimizes the amount of yucky stuff that has to come out his nose.
We finally broke down and asked for some counseling assistance from the church. Sherry and I have averaged about once a week lately where we go through an almost total emotional meltdown. We learned that this is somewhat normal given our situation. We have talked to other parents who have been through very similar situations and they have described the exact same feelings that Sherry and I struggle with daily. Pastor Jerry McSwain and Jim Miles came out to our house this week to listen to us, encourage us, pray with us, and share the word of God with us. It really helped.
On the nursing front there is good news and bad news. We have been told that Caden was approved for the Medicaid waiver. The bad news is that it could be up to six months before Medicaid actually begins funding Caden’s nursing care. The problem is basic funding issues. There is more demand than there are funds to support. The following paragraph is from an independent study called “REVIEW OF THE MEDICAID 1915(c) HOME AND COMMUNITY BASED SERVICES WAIVER PROGRAM LITERATURE AND PROGRAM DATA”. This report was funded by the Department of Health and Human Services and conducted by The Lewin Group in July of 2000.
“States also limit the number of program participants in different ways. Typically, states choose to limit program eligibility by degree of impairment or financial need. Many states also keep waiting lists because the demand for Waiver services is greater than the capacity of the Waiver programs. Some states provide services to individuals on the waiting list on a first-come, first-served basis, but many states prioritize the lists according to level of need for services.”
This paragraph sums up the dilemma we currently fall into. It is my understanding that South Carolina uses the first-come first-serve option for cost control. I have also learned that there are allowances in SC to prioritize cases based on circumstances. The only information I can gather on how to get your case reviewed is to knock on a few doors in Columbia. (i.e., Governor, Congressmen, Senators)
The remainder of the bad news concerning nursing care funding came from our insurance company this week. They can not grant an extension of services even if doing so could avoid another hospitalization. They are under strict guidelines when operating as a true HMO. If my employer backed the insurance plan with their own funds and only used the insurance company to manage the coverage then the decision to extend benefits would revert back to the employer. My previous employers like Honeywell and Northrop Grumman did fund some of their insurance plans. Both of these companies have well over 100,000 employees each. My current employer probably has less than 100 employees covered by our insurance plan.
I want to mention a couple of behind the scenes Nashville stars who have encouraged me this week. Dottie Moore is a songwriter and former chief of staff for her Congressman. Dottie emailed me this week and encouraged me to contact government officials. She witnessed the value of this action first hand during her time in Washington. The second influence on my week came from a performance at our church this weekend by and award winning studio guitarist Brent Rowan. Brent is a lifelong friend of our pastor at Seacoast Church Greg Surratt. Brent’s music was to say the least awesome! I immediately replaced Riley’s nighttime music with Brent’s latest CD “Bare Essentials”. The music was only part of the inspiration. I opened the cover of the other CD I bought “Up & at ’em” and found a great quote.
“Sometimes in life after you’ve tried as hard as you know how to make situations work, and they don’t, you simply have to pull up stakes and travel on to preserve your sanity as well as the sanity of those around you.”
I told Brent that this quote that is found as a description to the first song “Travel On” on the “Up & at ’em” album meant more to me than he could imagine.
Please keep us in your prayers this week. We only have a nurse for one night this week(Tuesday). Sherry and I will be splitting the night shift for the rest of the week. Please wish me well as I try to make appointments with the Governor, Congressmen, and Representatives.
Don’t forget to check out the latest pictures.
Gob bless you!
Hank O