Ambiguity and a birthday (sort of)

Lots to cover since the last post. The short story: Truman is doing well.

The long story (if math makes you queasy, skip to the asterisk*):

Last Wednesday, we were pleasantly surprised to find that Tru's feeds were being increased by 6 ccs per feed. Thursday morning, Dr. Diacovo explained that the resident who had transcribed the order had messed it up, leading to a much faster increase than Diacovo would have preferred. Truman did not respond adversely to the feeds (in fact, he appeared to love them), but the idea that Diacovo's plan of treatment was not being followed was utterly unacceptable. Diacovo assured us that he would restructure the way in which the orders were written, thereby avoiding the possibility of any ambiguity in the orders as they were delivered to the nurses. The formula by which the daily intake of breastmilk would be calculated would be the following:

((previous day's total feeding) + 20 ccs/1 kg/1 day)/8 feedings daily= amount to be administered at each feeding today

Truman currently weighs just over 3 kg. For the math-phobic, that means that every day his feeding should increase by 60 ccs. Those additional 60 ccs should be distributed evenly among his 8 feeds, resulting in a 7.5 cc increase per feed, per day. Because it's difficult to measure 7.5 ccs by sight, we would round up to 8 ccs.

*In other words, if every feed yesterday measured 18 ccs, every feed today should measure 26 ccs, then every feed tomorrow should measure 34 ccs, etc.

And so it was on Thursday (18 ccs at every feeding) and Friday (26 ccs at every feeding). Dr. Diacovo doesn't work on the weekend. Saturday, Truman's feeds increased to only 27 ccs at every feeding. We didn't catch the change in plan until we called at night to check up on him. Finding out that the plan had again veered from Diacovo's recommendation nudged us from concerned to irritated.

I called to speak to the medical fellow to ask why Truman's plan had been changed. Three things happened during this conversation that made me angry:

1. The fellow said that the attending neo-natologist (not Diacovo on the weekend) had not seen any reason to alter Truman's care. Instead, the attending assumed that she was, in fact, complying with Diacovo's plan of treatment. (How is that possible? Were Diacovo's notes written in hieroglyphics? How could his plan have been misinterpreted?)
2. The fellow spent some time trying to convince me that I misunderstood the formula by which Truman's feedings were to be calculated. She then spent several quiet moments stabbing away at a calculator only to arrive at the same numerical conclusion that I had already reached. In another arena, I might have felt some satisfaction at her transparent humiliation. However, when she's embarrassed about not being able to figure out the proper treatment for my son, it's not satisfaction that I feel.
3. The fellow said "I can ask the attending to consider increasing the feeds, if that's what you'd like." No, that's not what I'd like. I'm not the doctor. I don't want to come up with plans for his treatment. I don't want to call up in the evening and say "what if we fed him Mallomars?" and have you say "Great, I'll ask the attending." What I'd like is to have my son's care determined by the doctor who knows him best. If there is to be any deviation from that doctor's plan, I want to know why. That is what I would like.

Well, the next morning (Sunday) we arrived to find that Tru was still at 27 ccs per feed. The team of doctors on rounds saved us for last so that they could spend more time with us. We were not satisfied with their response, which included such equivocations as "...I wouldn't call it as mistake, exactly...."

Needless to say, Truman was put back onto Diacovo's plan. We moved from 27 to 35 on Sunday. Today we're at 43.

This morning Diacovo came to see us immediately after we arrived at the hospital. He apologized profusely for the miscommunications. Apparently, the Saturday attending thought Diacovo was being too aggressive with Tru's feeds and opted to slow them down. It was something of a relief to find that the alteration in the plan was not the result of a miscommunication between the caregivers, but instead a result of another doctor's more conservative approach. Does it excuse changing Truman's care without notifying us? Absolutely not.

An underlying problem here is the continuity of care when doctors and nurses hand off Truman to one another. Every doctor we've met has been kind, competent, and responsive. But none of them appears to have the long view of our son's care. Diacovo is off the floor as of tomorrow. We switch to a new doctor. The speed bumps that may result from that transfer are no longer tolerable. The way that C and I are able to sleep at night is by believing that we have taken our boys to the best hospital and given them the best opportunity to thrive. Emotionally, we can not afford to have that belief shaken.

Here is the thought that haunts us now: if this circus surrounds something as simple as feeding, what mistakes and ambiguities may have contributed to Fisher's illness the night he got sick?

The process has taught us to be fierce advocates for Truman's health. We no longer assume that information from one caregiver is communicated adequately to the next caregiver. The problem is systemic: while each doctor is excellent, we have literally no confidence that they operate as a cohesive unit and not as lone caregivers starting from scratch whenever they are presented with a new patient. The realization is disquieting, but also empowering. We are Truman's parents; the doctors are just the doctors.

Yesterday was Truman and Fisher's due date. We love them immensely. Happy birthday, boys.

So much other stuff to write about, but this is already a mammoth post. I'll write more later.

Much love to you and yours. Thank you.