Friday, August 23, 2013

Destructo and FPIES, Part One of Three

In my first entry, I told you all about a gastrointestinal condition Destructo has called FPIES. It's been noted that many autistic people have some GI problems and or allergies, and my little guy doesn't appear to be an exception to that. What follows is how we found that out...

I had a normal pregnancy with Destructo. I had the flu when I was eight weeks pregnant, but my temperature never went above 101F. I lost weight but by my last doctor's visit before he was born I had gained quite a bit. I had a bit of induction because when my labor pains started, apparently I get sciatica, and I was a crazy woman. So on Destructo's due date, I was sent from the OB's office to the hospital, where they hooked me up to Pit, and broke my waters. Destructo was born a little before nine in the evening on a chilly November day.

What I remember most about Destructo being a baby is the crying. And crying. Also, he liked looking at shiny things--mainly, the bowling trophies that were on display behind the couch. He had terrible reflux. He'd sleep on my chest for hours on his belly but as soon as I'd lay him on his back the screaming would start. Unfortunately, I was a total failure at breastfeeding. I managed to pump for eleven days before I couldn't keep up with him anymore. We introduced soy formula before a short time before switching to a dairy based formula; I was on soy when I was a baby due to a dairy allergy. Thomas was on the dairy formula for a few weeks before his skin started to break out from it (which is exactly what happens to me!).

So we switched him back to soy formula when he was five weeks old. That weekend he proceeded to violently dehydrate from both ends, to put it politely. At the time, we weren't sure what was causing it. He'd had his two month shots two days previous. His godmother had been visiting, and she's a teacher. Everyone kept telling me, "Don't worry, babies throw up."

From that Friday to Sunday he couldn't keep anything down, though he did okay on Saturday and kept a little bit down. I brought him to the pediatrician on Sunday. Despite the fact that his temperature was 97.5F, traces of blood in his urine (it was in the front of the diaper and the doctor said he had probably pooped it), and had lost two pounds from the previous well-check on Tuesday, Dr. E sent me home with a hypoallergenic formula.

That night, Destructo nosedived. The diarrhea got worse. I was so sleep deprived I hadn't realized he was going into shock. Monday morning, when my husband and mother woke up, they saw how bad he was and called the doctor. Made an appointment for 11AM, then called back and said we needed to come in earlier since I was thinking of going to the emergency room. We went in at 9AM instead.

I saw a different pediatrician than the day before. Dr. D took one look at him and said he needed to go to the hospital--which was what I'd been wanting to do all weekend; but I have anxiety disorder myself so I kept telling myself I was overreacting. Destructo's soft spot had sunken in, he was gray, and he was extremely lethargic. We were close enough to the hospital that Dr. D said we could probably get to the local hospital faster than it would take for an ambulance to arrive, so that is what we did. Dr. J met us there. Dr. J bypassed the ER and had him admitted right to the children's ward (it was a small hospital). We found out he was borderline septic from being so dehydrated--called Metabolic Acidosis--his blood had become acidic from the dehydration.

The decision was made to transfer him to the local children's hospital. At the time we were living in downstate New York, and he was airlifted by helicopter to Maria Fareri Children's Hospital.

About to leave our local tiny hospital for Westchester.

We drove the hour or so there, after stopping at home to pack some clothes for us to stay in the hospital with him; they told us it would take some time to stabilize him before they'd let us in to see him. He was admitted right to the PICU. After we arrived the doctor told us they came very close to putting him on a ventilator, but he was a little fighter. And if it had been another few hours...

In the PICU.

Welcome to motherhood, right? Since we didn't know what was causing our little baby boy to dehydrate, we had to play it safe. We had to wear those sterile paper gowns and masks. They did a spinal tap to rule out meningitis. Cultures and blood tests all over the place. They even had to put an IV in a vein in his head because he was barely six weeks old and so dehydrated that they couldn't get any of the other veins. He also an ultrasound, though I can't quite remember why. He was also hooked up to heart monitors.

After two days, Destructo had improved enough to that he was moved to the normal children's floor. We saw a ton of doctors and residents. After a few more days of monitoring, we were sent home on Christmas Eve. Thank goodness.

That night, he smiled for the first time. Our Christmas that year was being able to bring Destructo home from the hospital.

When we were discharged, Destructo's insane dehydration was chalked up to a virus. But that was before the second hospital stay...which I will blog about tomorrow!

~High Functioning Mommy

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