Crumbs

About an hour after Susan took her first post-operative dose of peanut, a bed-pan incident that resulted in her having to roll back and forth several times while her nurse changed her sheets led to increased pain, which lead to...her asking for her pain medication (Norco, which is an opiate).  

I had a mixture of emotions flood through me...
I did NOT want Susan to be in pain.
I also did NOT want Susan to have trouble tolerating her dose -- we would never be able to tease apart the cause...

But we had all agreed, when we decided to avoid NSAIDs if at all possible, that we did not want Susan to be in pain (that brings a host of problems I ALSO did not want)...so, as much as I wasn't pleased about her request for pain medication, I did not say a word.  As a team (the neurosurgery doctors, the PRROTECT doctors and myself), we had agreed that Susan could take Norco if needed.

I was thankful that I did not have to make a decision.

And then, as the nurse prepared to give Susan her Norco, she asked if Susan had ever had it before.
No.
(I tried not to worry too much about the idea that Susan might be allergic to the Norco.)
And then the nurse explained that Norco can cause stomach upset -- nausea, vomiting, etc.

For a split second, I wanted to try to talk Susan out of the pain medication.
I wanted to suggest she try Tylenol first.
I wanted to suggest she wait a few minutes to see if she felt better when she wasn't rolling.
  (I wished she still had her Foley catheter in...)

And then I realized I did not want to stop her from taking the Norco -- we had a plan, and I had to hope for the best.  

Still.
I could hardly stand the image of the opioid meeting the peanut in Susan's stomach.
I tried not to think about it, and I did not say a word.
I offered Susan a bag of crackers to snack on...and then I waited, and I watched.


Hours later, I decided I had to move around a bit, and get something to eat or I would be useless the following day.  There is something time-warpey about being in the hospital for days on end, and I was feeling like I wasn't thinking as clearly as I wanted.  I thought a short walk and some fresh air might really make a difference.  That said, I still wasn't totally confident in the peanut/opioid mix hanging out in Susan's body, and I left her door wide open -- feeling thankful once again that it was directly across from the nurse's station.  

I stopped off to chat with Susan's nurse, to tell her I was going to get something to eat -- quickly.  I explained that I would be back as soon as I could, and told her that I wanted to leave Susan's door open.  Another nurse standing nearby (who was not Susan's nurse but who was clearly aware of the peanut thing), asked what the biggest delay we had ever experienced in a food allergy reaction was.

I watched her physically recoil when I said "24 hours."

As she processed my response, I explained that when Susan had been struggling with her daily peanut dose early in the PRROTECT study (before she began receiving open-label Xolair injections), she vomited as long as nearly 24 hours after her dose.  

Susan's nurse looked through her open door and assured me they would keep a close eye on her.

I loved that I believed them, but, even so, I took a very short quick walk over to Foodlife in Water Tower (essentially across the street) and returned with my dinner.

Later, as Susan's nurse was preparing to leave for the night, she reflected on how brave we all are for participating in the clinical trial.  
I contradicted her, saying that Susan is the brave one.
Much later that night, as I sat watching Susan breath, I realized Susan's nurse was right.
We ARE all brave.
(Many people have said that to me along the way, but, I honestly haven't seen it that way -- sure, Susan IS brave...but me?  My husband?  Our family?  I really didn't see it that way until that night.)

The clinical trial has been hard, and downright scary at times.
But, as I said to two of the doctors running the PRROTECT study who came to visit Susan, we have always wanted a cure, and it has always been clear to us that a cure for food allergies is not going to be as simple as a prescription.
We are invested in a cure, and so even when it is scary or hard, or time consuming, we are going to see the clinical trial through.
It is just that important.
And this is something WE can do in the quest to find a cure.

I didn't sleep much that night -- I wanted to keep an eye on Susan...even though I knew her nurse was, too.  I appreciated Susan's nurse's diligence, but, knowing that Susan had eaten 1000 mg of peanut in a compromised state AND then taken a pain medication with an opioid in it just made me...nervous.

The doctors from the PRROTECT study and I had agreed that we would slowly move Susan's daily dose of peanut forward, as she typically takes her dose around 7:30 am. While we did not need to get it back to that early hour immediately (for it will be a while before she goes back to school), I liked the idea of moving it forward while we were in the hospital.

So...Susan took her second post-surgical dose of peanut at 12:30 pm the following day -- about 22 hours after her first post-surgical dose.  While I would NEVER deny her pain medication, and while I had worked hard to keep her relatively unaware of the discussions I had had with the doctors about NSAIDs and opioid-based pain medications (which had been relatively easy to do, as she was either sleeping or plugged into her iPad watching Netflix), I was beyond pleased that she had not asked for anything for pain since the previous day, as I felt every little thing helped increase the likelihood of her tolerating her peanut dose.

Lying flat, Susan started in on her chocolate covered Nutter Butter.  

It was my job to watch for crumbs, as Susan and I had come to understand that crumbs go hand-in-hand with eating (flat) in bed.  

As Susan's nurse joked, maybe that's why moms always say not to eat in bed!  
Right.  
And sure enough, a crumb of the Nutter Butter broke off, becoming entangled in Susan's hair.  I fished it out, freed it from a hair and popped it in Susan's mouth.  

Yuck, right?
Right.

Susan rolled her eyes at me as I popped it into her mouth, but, she didn't complain.
Neither one of us wanted her to have any less of the dose than she was supposed to...so, crumbs and all, she went for it.

She is one determined girl.

I wish I could say I was less worried that afternoon and evening, but, in all honesty, I wasn't.  I'm not sure when I will feel like we are back on even footing with this eating peanut thing, but, we aren't there yet.