Daddy was in our bedroom this evening with Bub when I discovered something amazing. I held it behind my back as I approached Daddy. Our conversation went something like this:
Me: Do you want to see something amazing….miraculous even?
Daddy: Of course.
(I reveal a baby wipe and then dramatically unfold that wipe to show what is inside.)
Daddy: Is that poop?!?
Me: Gross?? Are you kidding me? This is Audrey’s. Audrey’s POOP. And I could pick it up. Cause it’s a ball. It is not a pasty mess stuck to her rear!
Daddy: Oh yeah! Awesome!!
Audrey, this is the first time in at least two months that you have had a well formed BM. Your bottom is pretty much healed up and life is great!
Daddy has a good theory. Your cholesterol med used to be really, really thick. Your tube became clogged easily (I can totally see how it clogs arteries). One day…maybe a year ago?...we got a refill and it felt different. When I shook it, the med sloshed instead of sludged. I thought it was drastically thinner, but Daddy couldn’t tell the difference. It was one of those things where I said, “Remember how it used to feel, used to sound? It never did this before. Remember??” and he would say, “Oh, yeah, I kinda remember now.” (He loves me and just wants to be agreeable. He didn’t remember at all. But to his defense, I usually pulled meds more often.)
I have very little confidence in that pharmacy anyway and their customer service is atrocious, but due to the rare nature of the medicine, haven’t found another willing to compound it. So I called Dr. L asking her to call a specialist for the cholesterol formula, and then to call our pharm to make sure they had the recipe right. What they read to her was correct. Since Daddy didn’t notice a difference, the recipe was right, and I had no concrete proof, I convinced myself I was imagining things and let it go. Although every time we got a refill I thought to myself, it just wasn’t right.
January, we received a letter from our pharmacy saying they lost their contract with Blue Cross, and our script would now cost almost $400 a month. At that point, “find a new pharmacy” jumped to the very top of our to-do list. While I had the flu, I sat with Daddy as he called pharmacy after pharmacy, looking for one that would compound, take our insurance, and order this rare ingredient. Not easy to do. Eventually we found one. And guess what. As soon as we received the new bottle, it felt just like I remembered it should.
Another observation of note: all the other SLO kids get their cholesterol in a cherry aqueous solution or a soy solution. With the old pharmacy, yours was always in a non-cherry, but aqueous solution. Since you take it by g-tube, I never complained about this seemingly insignificant detail. But now that the new pharmacy does make it in a cherry aqueous solution, and is now the right consistency, it makes me wonder what other seemingly insignificant details they left out…
The odd part is our old pharm transferred the script AND the recipe to the new pharm. So they knew how to make it—just did it wrong? I wouldn’t be at all shocked. Angry. But not shocked.
Back to Daddy’s theory. Since your BM’s started down the road to recovery right about the time we switched pharmacies, he thinks that you are getting more, or at least more quality, cholesterol now and it makes all the difference. He just might be right. And since your cholesterol levels have been abysmally low, it will be interesting to see if they start to rise within the next couple of months. And if that’s the case…I don’t know what I am going to do about our old pharmacy. But I have a feeling, they aren’t going to like it.