Today we are supposed to be in Atlanta, having follow up appointments with our GI and Allergist.
We are not in Atlanta. We cancelled the appointments.
It was REALLY hard to make this decision. Darrel and I spend our lives trying to make sure our kiddos have the very best of everything: food, education, health, love. So cancelling follow up appointments with our highly sought out specialists seems contrary to all our daily efforts.
Last week, though, after the reaction to the Alimentum, I felt very discouraged. In my dismay, I lamented to Darrel “What are they even going to DO at these appointments?”
See, this time around, we aren’t staying with relatives. So a hotel room was in order. And a car rental. Because we travel on space available flights, we planned to fly to Atlanta on Saturday to ensure we were there on Monday. (In case we couldn’t get on flights Saturday, we still had Sunday to try.)
Add it all up, and the bare minimum cost to us for this medical trip would have been between $660-700, and that’s not counting food for Darrel and Jed (I would have to bring all my own food, of course). In the end, I’m sure it would have edged closer to the $1,000 mark for us to bring the boys to their doctors.
Which, even with me out of work and not likely to be able to return to work in February, we would gladly pay – IF we knew there was some tangible benefit to seeing the doctors.
Darrel agreed with me; we sent an email to both doctors on Tuesday morning outlined the situation and asking them if there was any hope whatsoever of a medical benefit to us beyond “take the vitals, ask some questions, do some blood and stool tests and keep doing what you’re doing”.
Now, I know the doctors can’t absolutely predict what they might do at the appointments; much will depend on the test results, the status of the boys health, etc. In January, however, the GI stated that he preferred to NOT do any invasive procedures unless absolutely necessary.
I was just trying to get an idea of whether our doctors thought a 16 month old with NO safe foods, who hasn’t gained any weight since March, might possibly be categorized as “absolutely necessary”.
Because if there is to be no scoping, no hydrogen breath tests, no testing at all beyond standard stool and blood testing…well, we can get all those tests done here at home and have the results sent to the doctors in Atlanta, right?
It was an awkward position to put the doctors in, of course. However, our finances dictate we exercise prudence in all matters right now; even medical care for our boys.
Wednesday we received a response email from our Allergist (the Rock Star). He agreed we are in a difficult position, but maintained that it is very hard to “tele-diagnose”. He offered a compromise we could live with: get our local doctors to take the vitals, order tests, and confer with him regarding continued treatments/testing/care.
Sounded good to us!
Unfortunately, I had to cancel the hotel room before Thursday night or pay a cancellation fee equal to half the cost of the room. So we waited to hear from the GI.
We’re still waiting; he never emailed back.
So Thursday night, our hotel cancellation deadline looming, Darrel decided that we were not going to go.
Even though we KNOW there are no excellent tests for FPIES, even though we know that many FPIES families have no specialists working for them, even though we know that these appointments would likely have yielded little benefit for us, I feel like a horrible Mother right now.
This decision is hugely guilt inducing for me; but once again, FPIES has placed us between a rock and a hard spot.
We had to weigh the risks and benefits of going to Atlanta; the risk is that we can’t make a mortgage payment if we go, and that we miss out on some vital medical help if we don’t go. The benefit is that we get some vital medical help if we go, and that we have another month of a roof over our heads if we don’t go.
Since it seemed likely we wouldn’t actually get any vital medical help, the decision is eminently logical.
Mommy Guilt doesn’t work on logic.
So, I’m feeling pretty crappy right now.
However, today WILL see us visiting a doctor. Zac’s cold is not clearing up, and I felt a steady wheeze in his chest all day yesterday. So we will be visiting his pediatrician today to see what’s going on with him.
I’m certain he will be labeled Failure to Thrive.
I wish FPIES would go away.
Please say I’m not the only Mama who’s had to make these kinds of impossible decisions regarding their kids medical care! What tough calls have you had to make?