Helpless

Do you know one of the worst things about FPIES?

It renders you completely helpless.  

Impotent.

Yesterday I changed 8 bloody, mucousy, smelly diapers for Mr. Happy.  He screamed in pain immediately after pooping each time; by the end of the day, he was screaming in pain on the changing table, wriggling and squirming to get away from my efforts to wipe his heinie, and his poor little tushie was bright red from an acidic diaper rash that no ointment seems to be helping.

I can do nothing to fix this for him.

I can only comfort him, hold him, nurse him, love him, and be there with him while his little body struggles to process through the reaction and heal itself back up.

IT. SUCKS.

He woke up first thing in the morning with a diaper already filled with blood, so his trigger ingestion had to be the day before.

Backtracking through our Monday activities and foods, I’m left with only speculation as to what he consumed that has made him react.  Mr. Charm had a dentist appointment in the late afternoon.  His dentist keeps a tray of sunglasses for the kids to wear when their teeth are examined to help with the bright examining light.  I handed a pair to Mr. Happy for him to play with…only I didn’t notice that this pair had flower stickers on the sides.  After he happily chewed away on them for a few minutes, I saw the stickers and took them away, only to see that he had gummed half of one sticker off the glasses and swallowed it.

That could be the culprit.

Of course, before we even made it into the examining room, I was filling out more stupid, redundant paperwork for the dentist (I LOATHE medical info paperwork…they just ask you the same questions once you’re in the appointment – why waste our time with filling out the freakin’ form??) and didn’t notice Mr. Happy had found a hidden stash of magazines in the corner of the waiting room.  He was happily tearing a magazine apart when I removed him from the magazines and brought him back to me.  He may have chewed on one before I stopped him.

That could be it, too.

For dinner, I made a stir-fry for my food eating boys: broccoli, cauliflower, bell pepper, water chestnuts, black olives, cashews, celery, a little vinegar, olive oil, salt and pepper, served over a bed of Asian rice noodles.  I know little bits of the rice noodles snapped off when I was getting them out of the package.  I know Mr. Charm is not the tidiest of eaters. Even though we sweep our kitchen and dining room at least 5 times a day, it’s entirely possible Mr. Happy picked up a crumb of some sort off the floor after dinner.

That might be it, too.

But, I don’t know for sure.

It narrows it down, though, to our two biggest trigger hypothesis: corn and rice.  

The most frustrating part of this whole thing, though, is that two weeks ago, Mr. Happy had finally, after months  of mild reactions, reached a point that was essentially baseline.  His poop still had a very mild odor to it, but we decided that was probably from months of having a whacked out GI system, as he had no other symptoms at all.

So the Geek started talking food trials.  

Something in my gut was saying “Not yet”, and after the acetaminophen incident last January, I’m steadfastly listening to my gut.  I really wanted to start Mr. Happy on a bone broth or a probiotic to help heal his guts up some before we started solid foods.  The Geek was anxious to get started; in the end, we agreed to do whatever our new Doctors said to do – after all, that’s why we traveled to Atlanta!

So I sent them emails, and they responded: probiotics sound like a good idea to start with.

I immediately queried the FPIES Mama’s about safe probiotics, and on their recommendation picked a brand.  Only, our health food store didn’t carry it and I had to order it online.

The day before it arrived in the mail, Mr. Happy started having reaction diapers.  Mucous and bad smell.  Clingy.  A little eczema.  I suspect is was a crumb off the kitchen floor or perhaps a paper bag I found him playing with one day (again, rice or corn!), but I don’t know for sure.

So we had to delay the probiotics.  We can’t start them when he’s in a reaction!

He had just started showing improvement; no more mucous, smell getting lighter again, when yesterday’s bloody diapers showed up.

So we have to delay the probiotics again.

I’m so frustrated!

I’m so scared that we won’t have any safe foods for him before I go back to work in June.  I don’t know how I can go back to work if I’m his SOLE source of nutrition…but we can’t afford for me to stay home!

I have 448 ounces of pumped breastmilk in the freezer.  It sounds like a lot, right?  But if that’s all he consumes, I’ll bet you money he drinks between 30-50 ounces a day.  So say he only takes 40 ounces a day; that’s only 11 days of food for him!  

I’ve been pumping every day since mid-September, so for 5 and a half months of pumping, that’s what I have to show for it.

Eleven days of keeping my son alive.  

At this rate, I’ll have about 690 ounces of milk prepared for him when I start leaving for work.

8.5 months of pumping.

For 17 days, about one months worth, of food for my son when I’m gone.

What am I going to do?

I’m a problem solver, a “fixer” by nature.

I hate FPIES.

I hate feeling helpless.

I hate watching my son writhe in pain.

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So that I don’t leave this as a complete “Debbie Downer” post, I have to say that Mr. Happy is an A M A Z I N G kid.  

As I finished changing his 6th bloody, acid-burn, mucous filled diaper today, and he screamed and writhed in pain, I got him re-diapered and picked him up and started hugging him.

He could see his brother from that angle, and Mr. Charm was riding his rocking horse, grinning and giggling.

Mr. Happy immediately started smiling and laughing at his brother!

I am amazed at his strength and endurance; even in pain, his personality is just to be happy!  How he tolerates the pain he must feel is beyond me.  How he tolerates the pain and continues to smile and be thrilled by life  is SO far beyond me I can’t even imagine it!

My boys are awesome; strong, resilient, positive little boys.  I’m so blessed to bear witness to their lives.  

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Anyone else had a hard time getting to baseline?  Anyone else just HATE feeling helpless in the face of your kiddos FPIES?