Photo by Rebecca Gould Photography

Wednesday, August 13, 2014

Operating Instructions

How do you instruct someone in subtleties you are only just starting to understand yourself?

As we prepared to allow Susan to spend an afternoon, night and most of the following day (so there was no getting around the fact that she would have to take a peanut dose while away from us), I struggled with this question.  

I wondered if I was crazy to entrust my child to another?  
(Even a parent of a child with food allergies...who also happened to be a doctor.)

I reminded myself that Susan has always refused to be defined by her food allergies.
(I reminded myself that we DO NOT want her to be defined by her food allergies.)

I stared at my computer screen, trying to find the words that would ensure my daughter's safety.  All the while, a part of me wondered why I would take such a risk...while another part of me asserted that the risk was not so great, and that the only way we could see ourselves through the clinical trial was to try to find some sort of balance.

As I am sure any parent of any child (and most especially those with a child with special needs) can attest, there are certain things a parent knows that they...well, just know about their child.  A parent sees things in their own child that others -- even those looking carefully and listening attentively -- will miss.  That's just the nature of the relationship between a parent and a child.  And so I wrote, and I edited, and reviewed with my husband and finally...I decided I just had the universe.

Susan's "operating instructions" were entitled "Susan's Peanuts."

Peanut Dosing Instructions

1) In the morning, with breakfast, Susan should take:
            10 mg Zyrtec
            20 mg Famotidine

2) One hour before dose, Susan should take:
            20 mg Omeprazole     

3) Preparing Susan's peanut dose:
            -- Place the taller Bullet Blender Cup on the counter in advance
               (this will allow pre-measured peanut protein and chocolate whey to settle)
            -- Fill the cup with milk (leave about 1/4 inch at the top)
            -- Blend using the Bullet Blender base
                (Do not run for more than 60 seconds continuously -- mix well, please)
            -- The short Bullet Blender Cup is a back-up, just in case something goes wrong

4) The peanut dose:
            -- Susan should have a small snack just before she takes her peanut dose
            -- Please check Susan's skin (cheeks, chest, back) just before she takes her dose
            -- I packed ones that she likes in the bag with her peanut dose
            -- Susan drinks her peanut dose with a straw (in the bag)
            -- She will need to lick the blender blades in addition to drinking the dose
            -- Once she has finished the dose, please pour milk down the sides of the cup to                       ensure she gets as much of the dose as possible. She will drink that, too.
            -- No need to wash it -- just screw the top on and send it home with Susan!

5) The 2-hour observation period
            -- Calm, quiet activity (movie, reading, board game, craft)
            -- Check Susan's skin (cheeks, chest, back) every ten minutes (I use the snooze                          function on my phone)
            -- At each 10 minute mark, ask Susan how she feels -- be sure she really thinks about                 that question
            -- Please complete the dosing journal (in the bag)

6) In case of reaction
            -- Skin changes -- observe.
                We have not treated skin changes.  It is best to watch to see what is                                     happening.  Susan can tolerate some itchiness and they have historically                               resolved without intervention (eventually, even if not right away)
            -- Nausea -- provide support, coach relaxation, remind Susan that she has tolerated                   this  dose
            -- Vomiting
                Provide support.
                Call on-call doctor for clinical trial.
                It is likely that you will not do anything else.
            -- For any other symptoms, it is preferred that you contact the on-call doctor for                       the clinical trial first, as their goal is not to provide medical intervention (such                     as Benadryl) that might mask other symptoms. 
            -- In the case of rapidly progressing symptoms such as difficulty breathing or                             sensation that her throat is swelling, administer Susan's Epi-Pen and page the                       doctor on call for the clinical trial.  In the case of an emergency, get her the help                 she needs and then contact us.

We have found that Susan does best if she has a mid-morning and mid-afternoon snack.  She has a variety of options -- it doesn't have to be much, just something so that her stomach is not empty.

That was it.
1 1/2 pages.
So much information, and little.

At the bottom, I provided both my and my husband's cell phone numbers and witnessed permission for the Hertz family to seek medical care for Susan if need be.  As I signed in front of a witness, I felt slightly ill.  I so hoped there would be no need for anyone ever to look any more closely at that piece of paper than we had...

The Clinical Trial Coordinator and doctors knew about and supported the plan.  Everyone knew how to reach everyone.  

Wanting to believe, but worried about the unknown (both for Susan and for Lydia and her family), we dropped Susan off at Lydia's house on Friday afternoon...and headed toward Bemidji, Minnesota.

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