There are many, many jobs a mom does. And with a child with complex medical needs, that job extends even beyond our education most days.
We have to have a team approach. I hold up my end of the deal and hope that everyone else is holding up theirs. I double check on some things. But honestly, there are some that are beyond my pay grade so I trust.
Most days, this system works.
Yesterday, I found a HUGE error. I’ve spent the last two days trying to educate myself on chemistry and complex math conversions, researching the effects of chronic toxic levels of an element and what needs to be done to reverse the effects. I’ve talked to numerous doctors and clinicians and they are just as baffled as I am. Seems this problem is ultra rare (just like Manny loves to do).
I’ll not go into all the details at this point but it all starts back with the issue of drug shortages.
There are national drug shortages of basic things like the trace elements (zinc, selenium, chromium, etc.) Even ICU Patients in hospitals were unable to get these for a while. I know this because Manny was in ICU needing IV selenium. He had critically low levels and they could not get it for him. Peds, ICU, hospitals are all at the TOP of the list to receive stuff first.
So it was agreed that he would get an alternative “adult” version. They did the calculations and came up with the amount he needed. I’ve asked numerous times to check to see if they were in therapeutic levels.
Fast forward to yesterday, we got his labs back. He has critically low levels of Selenium STILL. Nothing has changed. And just now I’ve been doing the research about what dosage should he be getting and what is he getting.
He should get 3 mcg/kg/day. He’s 23 kg so that’s 69mcg total. (And that’s for a person without a deficiency, just maintenance dosage.)
So imagine my frustration when I did the math and realized he’s getting only 40 mcg. And has been.
The more concerning issue is the critically high/toxic level of Chromium. 4 times the top reference range for an adult (there were no pediatric reference ranges available to our lab).
I again researched what he should be getting. For pediatric patients ages 4-6, he should be getting 1.4-.2mcg/kg/day. He’s 23 kg so that’s 3.22-4.6 mcg/day.
He’s getting 8 mcg/day. So almost twice the top recommended dosage.
This has been happening for over a YEAR! And he's having symptoms.
I’m heart sick.
We have 10 bags of the TPN that still have the high chromium and low selenium. It will be easy to fix because the meds that were on shortage are now back in stock. It’s fortuitous that just Tuesday I was in a room discussing just this very issue (before I knew about the overdose) with the people who purchase the elements for his home health. The part that ticks me off is that … these have BEEN available. For MONTHS. In fact, the one he was getting was the one in short supply and they were giving it to him trying to do the right thing for him.
Not sure where the system broke down. Not sure why this was never switched. Not sure who did the original wrong math. Not sure why no one caught this error in all this time.
No one can tell me that if stopping the over dosing will automatically reverse the issue or if he will need treatment/intervention.
Meanwhile, I’ve been asking all these questions about his labs … why are his proteins dropping? And especially his globulins? Platelets? Why does he have pancytopenia? Urinary retention, Etc
I didn’t want to go to medical school. I didn’t want to become a pharmacist. I wanted to be a Mom. Some days I just want to be a Mom. You know, make dinner, schlep kids all over the place to soccer or ballet, tuck them in and say their prayers.
Today is not one of those days.