Most days I can suck it up and get through it but today for some reason many things related to caring for Gage and Quinn are annoying me greatly. It’s the stuff that is connected to them being sick kids. Here is a list, but in no particular of the level of annoyance.

- Pharmacies. I’ve made no less than 7 calls about the SAME prescription. The doctor says she called it in. The pharmacy says she didn’t. Of course, she is OUT today.

- Pharmacies, Chapter 2. We have some 20+ medications to refill. They are mostly on different days (no matter how hard we try to get them on the same refill days, it never works) and have different number of refills left. So please, person, don’t get snippy with me when I’ve let a refill slip to ZERO, help me get a new one.

- BCBS is making me use Precision mail order pharmacy. I’ve not had a good experience there, I’m sure someone has, but I would not be that person. One of the drugs that Quinn needs is a liquid (she’s too little to take the first mg pill they offer) and instead of the 3 month supply of pills I can get (making the times I have to talk with them lower) we have to order it monthly about 5-7 days ahead, if we would, you know, to make it easier on them.

- Lab draws – Quinn still needs labs twice a week. She only needs to go to be seen in clinic every two weeks so on the off week we go to a local lab with standing orders. But she wants to go to another lab close by (same company) because A) We’ve seen some roaches. B) There is one woman there who very possibly HATES her job more than anyone I know and Quinn has noticed that. Last week she said, “She is not a happy person.” But the company (lab to lab for THE SAME COMPANY) doesn’t share standing orders. So I had to get another form and scan it and email it to the transplant team (I swear Kerrie, you ROCK!) to fill it out AGAIN, meanwhile we missed labs yesterday and today making them once this week. Bad mom.

-Traveling with sick kids. We will be going out of town and Quinn needs those labs but BCBS wanted me to pay out of pocket for the labs (4x, $400-600/pop) and then appeal that they will not pay for regular labs out of town. So I called our very capable (no longer on our case) case manager who just called me with the authorization code to do them and have them billed. She, too, saw the ridiculousness in the situation because you know, it’s to MONITOR A FRESHLY TRANSPLANTED kidney they recently paid $175,000 to do. But whatever. Amber ROCKS as well and after several calls, new forms from the transplant team, 3 calls to the lab 20 miles away from said vacation location we are set. I think.

- Traveling with sick kids, 2 – trying to make sure we will have all drugs in our possession when we leave. Yeah. Not going to happen. FedEx anyone? That will not go well. I can for sure predict that I will be spending some time out of town tracking back a package, pleading with the customer service person that there are kidney-saving drugs on board a truck somewhere.

- Filing for services. Period. Too much paperwork, wait times are unbelievable. Medicaid and Medicare. Which I need to do, but I swear I cannot focus on it until next year.

- Management of a lot of people – the people who manage the kids for school and health, well, there are a lot of people. They manage their education and their kidney function. But you know what? They don’t just do that on their own. I manage them. When I’m working out a situation (like refills, testing, etc.) rarely do I get to talk to the person that handles it. There’s a lot of people in between me and the managers. It gets old.

- Forcing stuff – Quinn is having FITS about one of her meds. She takes pills with ease, and has since before she was 4, but nasty tasting liquids? Lately it’s been a battle. Taking this med is non-negotiable. That doesn’t always bring out the patient, child-adoring mother in me. While we’re talking about non-negotiables let’s talk lab draws. She is tired of labs draws. Twice a week, 3 sometimes. There are screams and they are loud. Throw in an IV infusion to the mix and there is a lot of forcing and holding down the child on my part. I want to be patient, but again? The patient, child-adoring mother doesn’t always have an hour to cajole, in fact, we never do. And that really sucks for her. And when I let myself think about how that sucks for her, I cry.

The relentlessness of the above list makes me sad. Because it never ends. Literally. Never. Ends. Next month I’ll be annoyed about the same things but hopefully not all at once. The thing about it is, I would do anything for the kids to be well and well-adjusted but there are so many strikes against them that it feels like we are always pulling ourselves uphill.

But I guess that is another post entirely.