It's been far too long! Since my last post we have dealt with seasonal allergies, colds and either an upper respiratory infection, reactive airway disease or both. It's been a rough few months health wise for him and that has pushed off any food trialing. Yesterday we began the organic red grape trial. So far so good!
Our vacation to visit family in Michigan went off with out an FPIES hitch. So very grateful for this. Our family was wonderful. My sister-in-law and brother-in-law made their home very safe for Jack with his food allergies and my 12 year old nephew and 8 year old niece were nothing but helpful and cautious with food while we were there. Love them dearly. We also found out that Jack and Sean are terrific flyers! Whoo hooo, we love JetBlue! They moved our seats so Heather and I each sat with a baby on our lap and an empty seat next to us - awesome!
Our last day of vacation was stressful, Jack woke up coughing, (he had been coughing and had a runny nose - we thought allergies) and his cough was different than when he went to sleep. He was "junky" and we soon realized he was having chest retractions. Off to the University of Michigan Mott's Children's Hospital we went. Here it is, my nightmare. I am away from home, 900 miles away from our beloved medical team for Jack and he's in need of quick medical attention. My wife cannot come with me, there is no one else to watch Sean. I page Jack's GI and let him know we have to go to the ER. He calls back and instructs me to get to the ER immediately if he's having chest retractions. The good news is we are already half way there. We get there, a valet parks our rental car and we go right in - there is no waiting. A nurse comes right out from behind the desk and asks me what's happening. I give her the run down and before I can say he has FPIES, she's reading the medical alert bracelet on his wrist and reading it out loud to the other nurse at the desk. I give them our name and the security guard my license and he makes a quick ID badge and we are off to a room - literally in 3 minutes of waking in the door. So we get to the room with the nurse and she says, "what is he allergic to?' and I say corn, corn derivatives, green beans and acetaminophen. "What is his FPIES reaction?" I tell her and think, hmmm, well no one in an ER has ever asked me that before. The resident comes in. I tell him the story, he says, "don't worry, we all know about FPIES, one of the head physicians here has a child with FPIES." HOLY SMOKES, are you kidding me? An entire staff of people who know what FPIES is and don't look at me like I am nuts when I say he can't have ANYTHING with corn. The resident then says, "all corn products is gonna be tricky." I said, trust me, I know. I say, he will have to have a Rocephin injection if he needs an antibiotic and if he needs and IV no lactated ringers, just saline. Ringers Lactate solution is saline and dextrose, CORN. He nods and says, "OK let's take a look and see what we are dealing with here." That's it, no jockeying, no accusations that I am trying to play doctor (this has never happened to me personally but it's a common occurrence for families with children who have FPIES.)
They then say he either has an URI (upper respiratory infection) or reactive airway disease which is really asthma but they can't call it asthma until there is a pattern of illness and the child must be over 24 months old. They take us right to x-ray. This was hard for Jack. They had to put him in a special child that literally hold his arms over his head, his waist is Velcroed in and his legs are locked down. He also had a soft chin strap to keep him from moving his head. He screamed like I've never heard before but they got a super x-ray because he filled those lungs with a ton of air! Negative for pneumonia. But he has streaking, this is common in an URI or reactive airway disease. We go back to the room and they give him a neutralizer treatment, he HATES it. The screaming helps bring the medicin into his lungs. This happens 2 more times in the next 1.5 hours. He also had a steroid shot. All the while I am praying he's not going to react. The nurses have called down to the pharmacy and they say there is nothing corny in the shot or the nebulizer liquid. The doc prescribes an inhaler. I post this on FaceBook and another FPIES mom messages me immediately and says, "be carful, albuterol inhalers can be corny." I get on-line with my iPhone and sure enough ethanol is the propellent in the inhaler. So we make a new plan. Jack gets a home nebulizer machine. His GI has been updated and consulted while we are there, he thinks Jack would be OK on the inhaler because the ethanol is now synthetic but he agrees with me that the day before we fly home is the wrong time to try it. Jack is cleared to fly and we leave the hospital about 6 hours later.
We are so grateful for the phenomenal staff at the U of M Mott's Children's ER who took such good care of us while we were there. Our worst fear was simply a bump in the road. We will take him only to Mott's if he ever needs any medical attention while we are in Michigan visiting our family. What an amazing safety net.
Next month we head to a beach house here for a weeks vacation with the same wonderful family we visited in Michigan, we can't wait!
Thanks for your patience, I plan to blog much more regularly. I will say though I am a mom of 21 month old twin boys, time to myself is rare and precious!