Ashley's Story

She will leave fingerprints all over your heart



I'm on the right path. Thanks to some very honest people who broke it down. Insurance. Money. Plain and simple. If I had to guess(which I know I shouldn't) that would be the real reason we haven't been able to get it done. A home health company and their employee who I was working with this morning was MORE than helpful and she said, "I'm just going to be honest with you and let you know its about the insurance. Yours won't cover it and its just too expensive to have to pay for yourself. Your best option is to go through a hospital so that it can be billed through them to your insurance. We would love to help you if you ever need anything else." I just wanted to hug that girl through the phone FOR her honesty and compassion. ( If you need a referral just let me know and I'll privately send you the company name)

So I have been on the phone for over two hours this morning and think we are finally on the right path. Our transplant center is faxing orders to our local doctor who is faxing orders to the hospital who is currently working on financial approval through our insurance who thinks that if they can get the approval then she may receive her infusion by Friday afternoon. Unbelievable! She has needed it since Monday and won't get it until Friday(hopefully) because of paperwork and money.

I asked if Dave and I purchased it ourselves if home health could run it for us and they laughed. "You MIGHT be able to afford it one time, but its just not really affordable." Hmmm. I called our pharmacy and they laughed too. "We don't even stock it because of the high cost. It takes us two days to get it in and thats only with insurance approval." Hmmm. I'm really frustrated.

As a parent of a chronically ill child the whole "business" side of health care, the side that it really all boils down too, can make you pull your hair out. Its so difficult to be told that your baby needs care, but can't receive it because of money. It is such a feeling of helplessness.

So this morning I am relieved to be headed down the right path(finally) and to know that things are in the works versus me running in circles and receiving phone calls on three different phones, but still disappointed to realize that its "money that makes this world go round" and if we had unlimited amounts of it she would indeed receive much better care. That part makes me sick to my stomach.

Ash is still sleeping this morning. She had a rough night and mornings tend to be her hardest part of the day. Usually by early afternoon she is silly and playful and her "normal" self. I think we are making some progress toward weaning the TPN and increasing her feedings. I'll be making a change today so pray that she tolerates it well enough to keep going. Sometime during the night her pic line backed up and now has blood stuck to the inside walls of it. It is still drawing and infusing, but looks pretty nasty. I'm calling our surgeon this morning to make sure its safe to leave it or find out if it has to be pulled and replaced. I sure don't want to keep it if the blood will breed an infection inside or it, but don't want to lose it either because I think putting her through surgery this week would be too hard on her. Oh well, I'm sure either way its going to work out.

Thanks guys for letting me vent my hurt, confusion, disappointment and all that last night. Like I said, some days it gets to be too much and I think I'm going to go crazy. Your prayers for the baby gherkin are so appreciated. Have a great day. I'm off to fold laundry(at home!:) Yeah me!) Trish


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