Clinic on Friday.
It may surprise some of you that I was content to sit for two hours, waiting until our beloved allergist. It's because I know him, I know how he spends much more time than he can afford with his patients and their families - and that's so very valuable to me, when he does it. And so I sat, and waited our turn.
When he came in , we reviewed the possibility of corn and spelt allergy in the babes, chatted briefly, then got sent off for a blood draw. I can't begin to tell you how frustrated I am with myself over what happened next, but perhaps telling the story will exorcise it a little.
The phlebotanist we got was young, smiled at the babes, then was all business. I sat with the babes in my lap, and as the phlebotanist was tying the tourniquet around the babes' arm, I realized that the binky (pacifier) was across the room, in my bag. 'Once you've picked your vein,' I said, 'I'll zip over and grab the baby's binky.' Surprised, he looked up at me. 'Oh, it's good if he cries. It's good for his lungs.'
'No,' I said tartly, 'It's good for you, making it easier to find a vein.'
Somehow, I expected that he'd stop, and let me up to get the binky. But instead he swabbed the babes' inner elbow, then reached for the needle. At this point, I could have told him to stop, I could have popped the tourniquet off, but instead I sat, slightly surprised, and trying to go with the flow.
The babes had watched all of this with interest, and continued to watch calmly as the needle slipped into his skin. But the phlebotanist hadn't got the spot on the first try, so he slid the needle back and forth a bit, looking for his vein. The babes considered this briefly and then his face crumpled, and he began to wail. Then tried to get free, rocking his shoulders, his hips against our steadying hands.
The phlebotanist got his vein, and blood filled the tubes. He removed tourniquet, needle, and held pressure on the poked spot briefly. 'There will be a bruise,' he warned me. 'The baby didn't hold still.'
I took a deep breath. 'You mean, there will be a bruise because you had to fish for the vein.' I was furious, and he had the good grace to look slightly abashed.
I still am angry. And I just don't know who to be angry at: myself, for not standing my ground, or the phlebotanists as a group, who over and over have focussed on their procedures, rather than on the long term impact of the experience. Will the babes get over it? Absolutely. He's a baby. But I've had enough bad experiences with the phlebotanists to know that they are similarly task-oriented with older children, as well.
They are the needle jockeys of the hospital. And I firmly believe that they are a psychological wrecking ball for the chronically ill child. Happily, I've exercised some of my spleen by writing a note to Patient Relations...
I go to a gym nearby that is just lovely. The facilities are nice, the shampoo and conditioner in the shower smell yummy and ooooh, the whirlpool. And it's all women members, and yes, there's a nursery.
For a number of months now, I've been trying to talk to them about allergies. They claim to be allergy-friendly, but this is a dangerous fallacy. Currently, only cereal is allowed in the nursery, but cereal could (and often does) contain: dairy, nuts, peanuts, wheat, soy and of course, corn. So how allergy friendly are they, really?
I sat down with the manager and explained: unless you ban all food, you will not be safe for all kids with allergies. if you choose to have food, then you need to have backups prepared: you need to teach the staff good cleansing techniques, have a plan in place if one child eats something that another is allergic to, and above all, you must have an EpiPen Jr for each allergic child, whether or not they have a history of anaphylaxis.
Because, I explained, a child who has hives one day might have anaphylaxis the next. Whatever risk the parent chooses to take, you can prepare for anything by requiring an Epi. And everybody can be trained in how and when to use it - in fact, I offered to train them myself.
This training session was put off once, twice, until finally I wrote to the COO, asking what was going on. I wrote twice, and got a response this past week, from a new manager at my gym. She said that they were looking into the legal ramifications of EpiPen use by the staff.
Friday, I staggered in from the allergy clinic to see a response from the new manager in my email. They'd decided not to teach the staff how to use EpiPens, she said, based on legal advice that pointed out that the staff might not know when to use the Epis. But, she said, they'd certainly page me if my child had a problem.
The number of things wrong with that whirled in my head. What if he did have anaphylaxis? There simply might not be time to identify the problem and page me, have me come down and use the Epi. What part of 'life-threatening' don't they understand?
I pointed out that this was not a workable option, and urged the manager to consider carefully exactly what measures they were willing to take for allergy kids. Will they teach the staff cleansing techniques? How to identify an allergic reaction? Will they continue to call themselves 'allergy-friendly?' Or should they not have food allergic kids at all?
I asked them to reimburse me for the wasted months when I couldn't use the gym and patiently waited for them to resolve this issue. Meanwhile, I suppose I shall have to get used to the idea of giving up my membership.
This is the first time that an institution has refused to make the simple accomodations necessary for my children's allergies. Socially, we've run into people of my parents' generation who have simply abandoned the idea of feeding my children, and I accept the social reality that this presents. But this comes as a bit of a shock, and worries me, as I prepare to talk to the directors of two possible K-8 schools for the Eldest.
What will they be prepared to do? What won't they be prepared to do? As private schools, the Jewish day schools are not bound by the ADA, I don't think (Americans with Disabilities Act), and so I do not think that they have to accomodate my son(s), legally speaking. But we shall see.
But oh, am I shaken.