I KNOW that I have to be an advocate for my child. I KNOW it’s a constant battle. But seriously?
The last few weeks or even months have been very difficult. We’ve been slapped with one thing after another. And the thing that kept rattling around in my head was that Samantha got so sick that she ended up in the ICU, then was told she had diabetes, then was sent home with a slew of prespcriptions for insulin and a huge Glucagon pen. In case she lost consciousness or had a seizure.
Flashback to me walking out of the Neonatal ICU with my son, having just been told he had a serious heart defect and an extremely rare syndrome. “Don’t let him cry hard,” the nurse said. “Why?” I asked. “Well, he’ll start shunting blood across his heart, he won’t get enough oxygen, and then he’ll pass out.”
WTH? This is the way you dismiss people from an ICU? “Here ya go, here’s a stack of prescriptions – watch out, your kid may fall over as if dead, suddenly, out of the blue.”
Do we look insane? Because we are now. All 3 of my kids have decided to check into the local children’s ICU. What lottery did we win? My youngest, Annebelle, got RSV at 2 months old. We dodged the dire predictions when we walked out with her.
So anyway, back to Sam. I was further amazed when we were told to schedule an appointment with the endocrinologist in 3 months. TICK, TICK, TICK. Here I am with my offspring/time bomb once again. On my own. Trying to figure it out. Hoping she doesn’t fall over.
So I put her in a clinical trial. I want to open every possible door and check behind it. Someone will be there to help us.
The nurse and doctor at the trial have been very helpful. And we get to see them frequently. We get to ask questions. The trial doctor thought Samantha was having thyroid problems and told me what tests to ask my primary care doctor for. I pushed our regular doctor to get Synthroid started. Samantha feels a thousand times better. The trial doctor said Sam had protein in her urine. I asked our regular doctor to double-check it. It was there again.
I was at my breaking point, wondering where the endocrinologist was in all this, so I blew a gasket on a nurse in the office. I was told I have all the tools I need to manage Sam’s diabetes. I erupted. How could that be? I said that if I hadn’t put her in a clinical trial, she wouldn’t even be getting medical attention. Is that the way diabetes works? We got to see the endocrinologist.
Everything’s a fight. I KNOW IT. I’m my daughter’s best advocate. SHUT UP.
This week, Sam made the varsity softball team at her high school – as a 9th grader!
Because we tried so hard.