This Is Hard.

When does it ever end? When will these medical issues become medical issues instead of one great big fight?

Twenty days ago I get some indication that Dr. D. – Mr. Pediatric Gastroenterologist – was “getting it.” Well, it is not as though my vigorous advocating is what convinced him. No, it was the blood that he saw for himself in BabyR’s stool. At the time of the appointment BabyR was the one with the more severe symptoms – at least in visible and quantitative terms. For this reason Dr. D. was adamant that when the time came to order the colonoscopy and the endoscopy we would surely have to order BabyRB’s procedures first. I agreed that this was fine since we would still be ordering BabyM’s soon after.

Well? The time is here. The testing for bacterial infections, metabolic issues, parasitic infections… all normal. Naturally when I got the results of these tests I left a message with the scheduler to see about scheduling the procedures. Nothing. Day two called back…left a message. When she returned my call she was confused – asking, “what procedures? I did send an email to Dr. D. when you I got your message yesterday but I haven’t heard anything.” Day three – nothing.

In the mean time my poor little girl is vomiting (for no apparent reason), refusing to eat, and yup…losing weight. One would think that upon hearing this Dr. D. would be moved to action. Wrong again. He was given this news on day two. I know things take time, but we are talking about a child who is already below the charts for her weight – which by the way “concerns” him. Today, day four, I called back and this time left a message for Dr. D.’s nurse.

I CANNOT BELIEVE the nature of the call I received:

Nurse R: Hi this is R. from Dr. D’s office.

Me: Hi how are you?

Nurse R: I’m good. Ok, so Dr. D. is going to order the scopes for BabyM. (Interesting inflection – as though he just decided this)

Me: Ok good. I know that will be a few weeks out for scheduling; did he say anything about what to do as far as her losing weight in the mean time?

Nurse R: No, just keep doing your best to get her to eat.

Me: Ok, thanks. Oh, wait what about BabyR’s tests? I know we weren’t going to do them at the same time, but is he going to schedule him too?

Nurse R: No, he just said we’re going to do BabyM at this point.

Me: We were –

Nurse R: (Interrupting) I just asked him that before I called and –

Me: (Interrupting) I’m going to need him to call me then.

ARE YOU KIDDING ME???

MR. White Coat and I had already agreed upon a course of treatment. If the tests all came back normal – i.e. there was no infection to explain away the twin’s (LIFE-LONG) symptoms – it was TIME to get a look at what is going on in their GI tract. Am I going crazy? Just a few weeks ago it was IMPERATIVE (according to Mr. White Coat) that BabyR have the procedures first.

What is perhaps even more frustrating than this game of white coat and patient (cat and mouse), is that all along the way in the course of BabyM and BabyR’s treatment the doctors have wanted to do medical tests on ONE of them – as opposed to both – and then interpret the results and plan a course of treatment for them BOTH. I have had to remind DOCTORS that these are TWO DIFFERENT PATIENTS. This seems nuts to me. If I didn’t have insurance and was asking them to run tests on one of them but to treat them both – they would tell me NO WAY!

So now I sit and I wait for Dr. D. to call me back. I have prayed for wisdom and I trust that by then I will be calm enough to actually speak to him without “letting him have it” – that never gets you ANYWHERE with these doctors anyway. I find that stroking the ego and allowing them to think that things are their idea works much better – sometimes I even play dumb with them. They love that…they really seem to feed off it.

It is not that I think all doctors are this way. I actually respect those doctors who don’t treat me like some kind of hyper vigilant parent looking for a medical diagnosis… just for kicks or attention. It may seem unbelievable to some, but this is the life of most (if not all) of the parents I have talked to who have FPIES babies.

This is hard. In this fight I am sustained only by faith and grace.

Jehovah Shammah. Jehovah Nissi. Jehovah Rapha. El Elyon.