Photo by Rebecca Gould Photography

Thursday, February 26, 2015


When Susan's pediatric neurosurgeon told us she would need to stay "flat" for about two weeks post-operatively, I don't think I really "got" it.

Flat means -- FLAT.
No pillow.
No getting up to go to the bathroom.
Flat means...figuring out how to drink while lying down.
Flat means...figuring out how to EAT while laying down.
  (and by the way...FLAT is the wrong angle for watching TV)

I think Ann & Robert H. Lurie Children's Hospital is incredible.
But, when it comes to food allergies, Susan and I know from first-hand experience least with her particular allergy profile (peanuts, tree nuts and SOY), the food service department at the hospital really struggles.

There is soy in EVERYTHING.
And while we know Susan can tolerate soy lecithin and soy as an emulsifier (and in recent years have begun to simply avoid foods that have significant soy protein (read:  edamame, tofu, soy milk, etc.), I also know that I would never want someone else to look at something and determine whether or not Susan could eat it.

Add into the mix the fact that Susan is not to eat any new foods (something we agreed to when entering the PRROTECT study), and we came prepared for limited food options.

We brainstormed beforehand, and developed a (short) list:
Scrambled Eggs
Rice Krispies
Fresh Fruit I have done before every vacation (although I was keenly aware that this was NOT going to be a vacation) we have taken over the past 10 years...I packed a bag of non-perishable foods...some easy on the stomach, some packed with protein and iron (Keenwah Quinoa Puffs)...and others just plain fun (Lofthouse Cookies).  I also packed a cooler full of yogurt and cheeses that Susan likes...and ice, although I'm honestly not sure the ice is necessary this time of year (in Chicago).  

I managed Susan's expectations.
Food would serve its purpose...and while it might not be "fun," we'd do fun and interesting food when we got home.

In all that thinking and planning, I forgot to think about what it would be like for Susan to eat while lying flat on her back.

On Tuesday, the day of her surgery, the food thing didn't matter.
She snacked on crackers and drank Sprite through a straw.
  That's harder done flat than you might think... 
  (I only splashed her with it once!)

The morning after her surgery, knowing that the plan was for Susan to take her peanut dose, I encouraged breakfast.  Susan declined initially.  I waited a bit and offered again.  

Rice Krispies?
She rolled her eyes and said "how's THAT going to work?"
Oh.  Right.

(I have her very favorite Lemon Meringue Greek Yogurt stashed in the refrigerator just steps from our room...)
She looked steadily at me.
     I realized I would have to feed it to her.
     I had visions of myself dripping it down her face as I realized she had a point.

Scrambled Eggs?
It took 8 minutes to order the scrambled eggs, but, when I was done I was confident that food services would be using whole eggs (not Egg Beaters or who knew what else) in a skillet reserved for vegetarian egg preparation (read:  not on the griddle and not contaminated with who knows what else).  I liked what they had to say about the single peanut item I saw on the menu and decided to trust them to prepare the eggs.

At the last minute, I asked for grapes, too.

I LOVED the slip that came up with her order, and while options are limited, I feel confident that they totally "got it" when they prepared her order.

Susan started with the grapes, which she was able to feed herself.

And then it was time for the scrambled eggs.
  (I can only say that I did my best.)
Oh -- and I skipped the little bits of egg that I was certain were going to jump off the fork and land somewhere other than Susan's mouth, somewhere undesirable -- like in Susan's hair.

I believe the act of feeding someone is incredibly intimate, even though looking back I do not recall feeling that way when I was trying to feed my 2-year old twins simultaneously. Maybe the intimacy feels greater when you are feeding someone who has been able to feed herself for years -- when your 12-year old daughter, who is on the cusp of adolescence -- is trusting you to feed her with grace, kindness and compassion...(and maybe a bit of humor, too.)

Despite my "feeding success," for the rest of the morning and into the afternoon, Susan opted for finger foods she could feed herself (I am ever so thankful to my dear friend, also Susan, who reminded me several times of the challenges we would face with food at Ann & Robert H. Lurie Children's Hospital, because I came prepared!).

Medical staff were in and out all morning -- the neurosurgery team (twice), and then again later...

I was continually impressed by the thorough understanding of Susan's medical history that every person who enters her room has -- they all understand that Susan's surgery was the result of an "incidental finding" and have at least a concept of what is happening with the PRROTECT study.  

As the morning wore on, I found myself talking a lot about the clinical trial, explaining the underlying premise and answering MANY questions (remember, we're on a neurosurgery floor, so the allergy piece is new to these folks).  There were even some medical staff who were genuinely amazed to learn that such important work in the treatment and management of food allergies is being done at Ann & Robert H. Lurie Children's Hospital.  

After a while, I started to feel a bit like a PSA for OIT, clinical trials, name it, we were educating people...and they were genuinely interested.  (I suppose everyone lives in his or her own little corner of the world, at least some of the time -- and for the most part, the folks we have been seeing are neurosurgery folks...)

As the morning wore on, we talked A LOT about pain management, and, fortunately, we did not really have to make hard decisions about the use of NSAIDs or opioid-based pain medications, because Susan was really pretty comfortable with the Tylenol she was receiving through her IV.

One of the anesthesiology residents, who was listening VERY carefully volunteered that he had recently read an article talking about a possible drug interaction between Xolair (when used to treat patients with uncontrolled asthma) and NSAID's.

There is SO much yet to learn about food allergies.

Around lunchtime, the doctor from the PRROTECT study came by, just to check on Susan.  She reviewed Susan's chart, asked about her pain (by then, her PCA had been removed because she had only used it three times and she was very comfortable).  We decided to give 1/2 of Susan's peanut dose (1000 mg) around 2:30 in the afternoon, with the doctor present.

We pre-medicated as usual -- Zyrtec, Omeprazole and Famotidine at about 2:15 pm and then, at about 2:30 pm Susan took her peanut dose -- in the form of a single Nutter Butter dipped in semi-sweet chocolate.  [She's NOT a fan of plain Nutter Butters, and really misses her Snickers Bars (which is another story)...and had planned to go back to dosing with half of a Snickers Bar before this newest bump in the road came up.]  I'm guessing she'll be back to the Snickers Bar thing as soon as she is allowed.  

Unless I can talk her into a Reese's Peanut Butter Cup...

Thirty-hours post surgery Susan was still connected to a lot of tubes and machines, and while it might not be the easiest photo to look at, to me, it speaks volumes about Susan's courage, determination and commitment.

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