The Stomach Bug

On Friday February 14, 2014 our baby boy Sean began with diarrhea and few short hours later he was vomiting. 24 hours later it hit Jack with a vengeance, then 5 hours after Jack I was hit and 15 hours after me Grammy was down. The babysitter got it too. Can I tell you I haven’t been this sick in almost 20 years?! It was horrendous.  I have no idea how my wife was able to dodge this bullet, but she did. 

By Sunday evening I was feeling “OK” and Sean seemed a bit better, Grammy was down for the count. Jack was lethargic, still vomiting, very fussy and not producing enough wet diapers.  We spoke with the nurse on call at the pediatrician’s office and at 5:00 pm Momma and Jack went off to the local ER. This is the first time Jackson and Sean have had a severe illness. I am a stay at home mom and because of Jack’s FPIES we have worked very hard to keep them healthy and away from major illnesses.  Heather and I were ready to engage our special emergency treatment plan for Jack.  This includes a letter from his allergist Dr. Wayne Schreffler at Mass General Hospital and a Corn Allergy Emergency Medical Instruction Template given to me by a friend who works in the medical community who also has food sensitivity reactions to corn and other foods.

https://docs.google.com/document/d/1yjBl51k7n1h8B7cJr6lnAh10C76YWK3ZUPdCCcG0nJs/mobilebasic?pli=1

Once again I will say, almost everything has CORN! GAH! It’s so incredibly frustrating. Jack could not have the numbing agent when he had his IV places because it has 3 ingredients in it with CORN. We were not interested in finding out while Jack is puking his guts out if he’s going to have a skin reaction or break out in hives etc., to an injection filled with corn derivatives.  Heather presented all of the documentation in the triage area of the ER and she cannot count how many times she had to remind everyone that he could not have anything with corn.  “Oh, we will just give him Zofran now under his tongue to stop the vomiting.” “No! He cannot have ANY oral medications that are not compounded specifically for him.” “We will start him on Pedialyte.” “NO, he cannot have regular Pedialyte, we have to make it at home with his safe CORN FREE sugar and salt.” “We will give him an IV with saline and dextrose.” “NNNNNNNNNNNNNOOOOOOOOOOOOOOOO! HE CANNOT TOLERATE ANYTHING WITH CORN IN IT AT ALL! NONE! He can’t eat it, drink it, take it in his veins, have a suppository with it or have an injection of it under his skin. NO CORN, ZERO! It gets very frustrating and you cannot let your guard down for one second.  After an IV bag of corn free saline Jack comes home and sleeps from 11:30 PM to 5:00 AM.  He wakes in a good mood and is playing a bit. He gets fussier as the day goes on and he can’t seem to settle for a nap but he does a huge, great poop so we think he’s on the mend. I speak with his GI, Dr. Qian Yuan at MGH and let him know what’s happening with Jack.

9:00 PM Jack begins to vomit uncontrollably, I am holding him and I can hear it coming again.  I throw the towel on the floor and turn him towards it while he is retching from his toes. My heart is breaking. It’s a ton of throw up and I look down and there are brown mucous chunks – blood. I check his diaper and it’s dry. I page Dr. Yuan, he says get to the ER. I load him in the car and we go. When we get there I pull out all of Jack’s paperwork again. He gets the big red band that says allergic to corn and acetaminophen. I go through the FPIES story again and again – the receptionist, triage nurse, nurse, ER doc – no one has ever heard of FPIES. One again I refuse any oral meds, suppositories, everything but a simple saline IV.  The nurse we have is amazing. She scans and copies Jack’s forms and reads all of them. She tells me her daughter has colitis and can’t have dairy or soy.  She tells Jack exactly what she is doing and when it’s going to hurt. She’s very gentle and professional.  Jack is already traumatized by his last ER trip and he moans and cries.  Once the corn free Zofran is administered in his IV, he falls asleep. The ER doc informs me he is going to contact the in-house pediatrician, she arrives about 30 minutes later.  I begin my spiel about FPIES and she knows about it!!! She was a resident at MGH and knows Jack’s GI!!! She gets him on the phone immediately and they begin the transport discussion, she feels Jack’s needs will be better served on the pedi GI floor at Mass General.  I am exhausted and still recovering from this bug too and at this point as it’s about 1:00 AM.  Heather agrees to come to the hospital and ride with Jack in the ambulance. She arrives and they load into the ambulance at 3:00 am.  I get home, shower and talk to Heather. I fall asleep at 5:30 am and am up with Sean at 7:30 am. I talk to Heather and then make Jack’s safe pedialyte and head into Mass General.

Jack is miserable. He hates being in the hospital and he cries anytime someone medical looking comes into the room. He’s hungry, exhausted and just wants to be held or lay down in the baby jail crib (mostly just held.) I hold him while Heather sleeps.  The doctor arrives and says they feel Jack doesn’t have a major GI bleed.  It was most likely a small tear in the lower part of the esophagus that was already weak from the excess acid he already has due to his FPIES.   The vomiting over all those hours and days was just too much.  He’s starting to take watered down formula.  He is going to stay another night to make sure all is going to stay down.  His labs have come back again, normal. We are relieved it seems to be a minor issue but we are in one of the best hospitals in the country on a GI unit and they still suggest options for Jack that contain corn. They want to give him oral Nexium when we leave (he’s had it in his IV,) guess what? Yeah, it’s made with corn.

This hospital stay highlighted a few things for Heather and I. The first is that Jack is medically fragile when it comes to FPIES and getting a GI virus or bacteria. It hit him incredibly hard.  He got much sicker and it was a lot quicker than any of us. It also highlighted how little the BEST medical professionals in the country know and understand about FPIES.  There is so much education, advocacy and research that needs to be done. Lastly once again Jack is a tough, tenacious little boy.  He defiantly suffered some medical trauma that we will work through together. Jack inspires us to be better and do better. We will not fall victim to FPIES, we will rise up in pure defiance and do everything we can for our son and to make every medical professional we encounter, FPIES WISE.