Shawn wrote that beautiful post this morning and I second his sentiments. But now I need a space to vent! So you're going to have to bear with me!
I was so aggravated this morning. It's the little things that get me. Clare is on a blood pressure medicine three times a day. It's a beta blocker that slows her heart down, so it doesn't have to work so hard and, thus, lowers her blood pressure. She has been on this medication for over 7 months (since her surgery) because her pressures were just really high. Last night, Shawn was dosing out her night and morning meds and there was only enough in the bottle for one dose. That alone got me riled up because there should have been another week's worth in the bottle (which amounts to 21 doses). I was also a bit mad at myself because I thought the bottle looked like it was getting low, but it didn't need to be refilled until the 20th, so I thought there would be enough, especially since it was only the 13th. Then the confusion begins.
We get most of our prescription from Brooks Pharmacy. They're close, open 24 hours, and convenient with a drive-thru window (very key with two kids!). They've been great about the majority of our prescriptions. The only problem we've had with them is that they don't regularly stock Clare's blood pressure medication. It was always a gamble with them whether it would take 1 day or 7 days to get a refill. So we chose to have that medication filled at the clinic pharmacy where Clare's doctors are. However, we dose out Clare's meds at 10pm, so the clinic pharmacy was closed by then. Clare gets a 6am dose as well, so we needed her medication that night. To get to the point, I called Brooks Pharmacy because I knew they were open. Well, surprise surprise, they did not have the medication in stock. And because it is a liquid suspension that has to be compounded specially, we would have to wait while they made sure they had the recipe, ordered the ingredients, and compounded the meds. So now we're talking about 5 days. It was worth the phone call, but it wasn't going to happen. (Well, maybe not worth the phone call because I had to deal with a snippy pharmacy tech who told me bluntly that if it was so important that Clare not miss a dose, then next time, I should call the prescription in before I ran out.) No big deal - Clare would be a little late receiving her morning dose and I would call the clinic pharmacy in the morning. They stock the med and can compound it fairly quickly.
This morning, I called the clinic. And I get Rite Aid on the phone. Rite Aid? I was calling my clinic pharmacy. Yeah, apparently sometime in the last couple weeks, the clinic pharmacy closed. They shuttled all their prescriptions over to Rite Aid. Okay, no big deal. Let's look up Clare's prescription and get that filled for you. Now Rite Aid can't locate the recipe for Clare's prescription. It's not in the big recipe book they got from the clinic. They also do not regularly stock that medication. I explained the dilemma to the pharmacist (who was so kind and patient - a very nice man named Jeff who was a bright light in a dark morning!). He said he would see what he could do and called me back. He found a company who he could order the medication through (already compounded), and they were going to overnight it to Rite Aid. So we would have her blood pressure meds at 9am tomorrow morning.
By this time in the morning (barely past 9am), I was already frazzled. Jamie was ready to go meet his friends at the playground. And Clare had spilled out of her diaper all over her Exersaucer (if you get my drift). What fun! My other bright light is Shawn, of course. Clare's cardiologist said she really didn't want Clare off her meds for over 24 hours. If there was no choice, there was no choice. But it wasn't a good idea. While driving to Burlington, Vermont (hours away), Shawn called local pharmacies until he found one that had the ingredients in stock and could compound the medication in hours. He then talked to Clare's cardiologist who wrote a 3-day prescription to this pharmacy, so we can get Clare back on her meds today.
It will hopefully all be resolved today (as of now, though, Clare has still missed two doses of meds). And I will never take it for granted again that a month's worth of meds is actually a month's worth of meds. I was so aggravated. Refilling a prescription should be an easy thing. Ensuring that we get a full month's supply of a medication should be an easy thing. As I've said before, I am under no delusions of how my psyche works. I know I am getting nervous because Friday is Clare's sedated echo. She hasn't had an echo for three months. To us, she seems to be doing great, but you never know what the echo will show. Plus she has to be under anesthesia for it because the chloral hydrate last time only lasted 20 minutes. Any form of sedation and anesthesia is very risky for Clare. Then next week, Clare has her first-year evaluation with Easter Seals. This will be a deciding point in whether one hour of OT is sufficient or if Clare needs more services (such as PT or speech). Plus we will get an official determination of how delayed Clare is. I hate the labels. They're just words, but they still hurt. Then to add on top of that, my sister Erin, myself, and Clare are heading down to WV to visit my grandparents. They are selling their beloved farm which we spent summers on as kids, so we wanted to get one last visit to the farm in before it is sold. Clare has never been that far away from home or her doctors. And on a plane. So I know there is a lot going on these next couple weeks that has me a little unsettled. It's just I can't handle the little things sometimes. I have learned how to roll with the punches on the big stuff. Why not the little stuff?