Tonight was our first night giving the boys their doses on our own, without the safety and security of SAFAR’s trained professionals around to keep our kids in one piece if they begin reacting. I’m not embarrassed to say I was actually queasy on the way home tonight, in anticipation. We learned many things this evening, not the least of which is to not underestimate the power of pharmaceuticals or television.
The boys were ‘pre-dosed’ with Benadryl before we came home to help ready their systems. We arrived before 5pm and began to prep their doses. The little measured cups have their respective names and dosages on them, as the FDA now considers the nut powder to be medication; although it’s food, and not usually regulated by the FDA, because it’s being used as medicine in this context, it gets regulated like medicine. We pulled out the bin of items we might need… cell phone with Tina (our ‘go to’ physician’s assistant on this study) and Dr. Nadeau’s numbers on speed dial; Benadryl tablets; Benadryl topical gel; various nose sprays; various inhalers; a notebook to write down details of what might occur; EPI pen; Zyrtec… it’s our own mini-pharmacy. I feel like I should have to pass a licensing exam to dispense the amount of meds we have here. 
The boys began to eat their doses mixed into chocolate pudding, and we held our breath as we tried to appear calm. Ari’s cheeks quickly turned red as he eagerly slurped down the chocolate pudding, and that was the extent of his reaction. Aviv, on the other hand, finished his and immediately started to get congested, cough and show signs of impacted breathing. Some quick puffs on both of his inhalers helped to steady his breathing, and nose spray opened up his nasal passages. A few minutes later, his face started to get red and splotchy, so I gave him Benadryl and called Dr. Nadeau. As his face began to get puffy, and the redness spread all over him, we slathered him in topical Benadryl and shared our observations and actions with Dr. Nadeau. She was so calm and reassuring, told me how impressed she was that we did everything right (Yay! My OCD-like note taking and question asking pays off!) and gave us some additional pointers. Another round of Benadryl (topical and oral) later, and another call with Tina, and Aviv was under control. He still itched all over, but the rash and puffyness subsided. 
Throughout all of this, we had trouble getting Aviv to sit still. He wanted to run around, was sugar’d up from the chocolate pudding and popsicle (given to cool his throat; another way to help calm his airways), and was his usual high-energy self. The problem with that is that the more active you are, the more likely your IgE reactors are to react. He sat still long enough to eat some toast (carbs are recommended to help absorb the nuts/ease potential stomach pain) and continued to be a bit crazed until we succumbed to letting them watch a movie. I don’t want every night to go that route, but we needed to pull out all tricks tonight to help stop his reaction from getting worse.
Both boys are in bed now, and Orr and I have recovered from our first unassisted night. We tiredly celebrated the fact that they each were able to eat 1250mg of nuts without a trip to the ER, and debriefed our lessons learned… more substantive food for them pre-dosing, more calming activities post-dosing, the earlier dose time is important to be able to watch them for longer afterwards, dosing is a 2 person job, we need to stock up on a lot of medication, keep interesting books/art supplies around, TV can be your friend, etc. Dr. Nadeau told us that the first few doses after moving to a higher dosage (which we did yesterday, and will do every 2 weeks) can be hard and are more likely to involve reactions; after that, the body starts to figure it out and the dosing should go smoother. Fingers crossed.
There were parts of this evening that reminded me of our first night home from the hospital after Ari was born, thinking ‘who thought it was a good idea to let the two of us novices take care of this baby on our own?!’ Even checking on Aviv as he slept tonight, leaning in close to feel him breathing, brought me back to the early days. Just as we were nervous to go at parenting without a detailed owner’s manual then, some days feel like that still. We’re breaking new ground with this study, so there definitely is no owner’s manual. What we saw tonight, though, is that we can do it. We can handle the rough moments by relying on each other, our experience, our medical team, and our resilient boys, and get through it all relatively unscathed. All of that makes tomorrow night (and the nights after that) easier.
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