The short version:
Depressing. Hard work. Some moments of major positivity.
The long version:
May started school and her father visited her new nursery, both of which I think are amazing places that will strive to improve May’s development.
May and I also met with multiple professionals. In general, I’d say that everyone involved with May’s care has her best interests at heart. Or mine. But, sometimes, their professionalism gets in the way.
For example, May’s appointment with the big wig metabolic consultant at the children’s hospital. In reference to the pyriodoxal phosphate he wants to administer to May and why she will have to be admitted to the hospital for her first dose, he used the phrase, “We might have to give her a bit of oxygen,” with a warm, dismissive chuckle.
This is what I heard: “She might stop breathing and we will have to resuscitate her.”
Earlier, I met his assistant – also a major doctor – who stared by having a hoo-hah with me about May’s weight. She examined May’s chart, though not May’s chub, and thought she wasn’t putting on enough weight.
“It’s fine,” I said with total confidence.
“It’s very concerning,” she said.
“Really, it’s fine,” I said.
“We have a dietician on our team. She could talk to you.”
And, on…
This is what I mean when I say that anything regarding May’s normal baby-ness is blown totally out of proportion. For example, could her lack of weight gain have anything to do with:
- her no longer sleeping through the night and so not taking an extra bottle at 3 am?
- that her head is 1000% below the size it should be? After all, heads are heavy.
- that we are weaning her and she loves her milk?
- or a million other possibilities including that the nurse wrote the number down wrong?
Because, the child has loads of chub. Delicious rolls all over her body. The child is not underweight.
Next, she asked me to “just run through everything again – I’m really sorry to ask you to do this – from the beginning?”
“Don’t you have this in your notes?” I asked.
“Yes,” she said, with that professional and caring half-smile doctors reserve for those patients that don’t follow the path laid out for them. “But, it helps to hear it from you. So, the pregnancy, was it normal?”
“Yes.”
“No problems?”
“No, it was perfect.”
“And, then. When did you first know that something was wrong?”
Inside, in my head, in my heart, I felt my entire being shrivel up. I simply could not continue.
“Surely you have all this in your notes?” I repeated. “Because, if you are asking me when I knew, then I will have to explain that the first I knew about it was when I thought my daughter was dying. And, that is too traumatic for me to talk to you about here.”
“Oh,” she said, with a sudden understanding and genuine sympathy, “of course. Let’s move on.”
Both of these moments had the effect me losing all concentration on the task at hand, forgetting to ask about May’s recent EEG results, or ask any important questions about May’s care whatsoever.
The most in-depth query I made from that moment on was asking if pyridoxine was administered as a tablet or liquid form. Worse, despite feeling that the big wig consultant was a decent and obscenely well-informed individual, I walked away feeling like my child was about to tested recklessly, which was the opposite effect he was aiming for.
