As a parent to sick kids I think an important, even vital part of our relationship as caregiver/patient is for them to see me advocate for them .
There aren’t many times when I’ve lost my temper, but if I do it’s usually for a good reason (at least it is to me and my kids). I can think back to the time that Gage was in so much pain he couldn’t stand, sit, or move his neck (catheter #2) and the surgeons nor his dialysis doctor were addressing my concerns about his pain, the time Quinnlin had 3 ultrasounds for the same test for her transplant evaluation and the last one resulted in her missing a day of school and me a day of work. There are also the many times that our time isn’t counted as valued. An example is when the clinic won’t/can’t order infusion meds until the IV is actually IN the arm – when it makes sense to order the med when we check in instead of the hour or sometimes later than an hour, as such was the case last Thrusday.
I’m fine with the kids seeing me upset when it’s appropriate, in fact, I think it’s a learning tool for them for when they are their own advocates. It’s just the truth, but health care people just don’t see what we see and they can’t know how it feels from our perspective – whatever it is.
If I’m to teach them the regular things about caring for themselves by being an advocate – even an upset one – is part of the package. I want them to grow up to take care of their kidneys, handle their meds, listen to their bodies (hence the E.R. visits when the kids ask to go) and to be inquisitive about what is happening with treatments and tests. The only way I know how to do that is by example.
So today, when I call the patient advocate, I don’t really have to. But I have to. It’s my responsibility to my kids and for other kids. They deserve the best care AND the best customer service that the health care community can offer. Would I rather not? Of course, I have other things to do, just like every other parent on a Monday, but I want to be able to tell Quinn that I am trying to make the impact of her treatment less of an impact on her already impacted life. When we go in next month I want it to be different for her and I want her to know that I did that and she can, too.
The problem with this is that you always feel like you are complaining, which can be quite the reputation to have when you work with people every week. I strive to show respect for the people and frustration for the process. There’s a distinct different. The people who are ordering the meds or putting the IVs in aren’t the ones that make the policies, they are just the facilitators. It’s the hospital policies that are usually in question, or the “way we’ve always done” mentality.
All I want to do is just to change some of the way they’ve always done it and when Gage and Quinn are older I hope they will do the same.






