Sunday, August 25, 2013

Destructo and FPIES, Part Two of Three

This post is an edited version of events from this old place called Livejournal, which existed before Blogger. Basically updating my point of view to save on typing. It's not easy to type up a long blog when your spectrum kiddo has popped off half the keyboard on your laptop. ;)

At the end of January, 2010, Destructo ended up back in the hospital. On a Monday night, I ran out of the Nutramigen formula he was put on after his first hospital stay and gave him one four ounce bottle of Similac soy, since he didn't have a problem with it when he was two weeks old. I just needed something to hold him over until we could get more Nutramigen.

Within an hour he was throwing up. Couldn't even keep Pedialyte down.

Fearing a repeat of six weeks previous, at two in the morning my mother and I rushed right to the hospital (only one town over, thankfully). The ER there even called our pediatrician, Dr. A, who rushed right there (he was my pediatrician as well). Our pediatricians has been keeping a close eye on Destructo since that terrible time right before Christmas. I remember him asking why I didn't call him first, he could have met us here; I told him I was afraid the night answering service would tell me not to come to the ER and wait until morning like they did last time. He said they wouldn't do that to us again.

At one point in the ER his heart rate shot up to 217 BPM and it took a while to get it down. Also, his bowels emptied to the point where I was sure he was shedding the mucus lining of his intestines, because there was no way so much could come out of a twelve pound, twelve week old baby. Dr. A was adamant dehydration shouldn't cause that, or a reaction to formula. The formula might cause what is happening to him, but it not the cause by itself. The decision was made to transfer Destructo to Westchester again, except we went by ambulance this time since his dehydration wasn't as bad. Also it was windy. I was able to ride in the ambulance.

Our wonderful pediatrician also told the hospital to admit us and start running tests, and not just treat him and send him home. We had to wait several hours in the ER for a bed to open upstairs. Later on we saw the metabolic genetics doctor again, and I already had an appointment a few weeks later anyway. That doctor took me seriously about everything I had to say, and they had a GI doctor come up for a consult.

The GI doctor was an ass (and as I later found out, not even a pediatric GI). He said it's most likely a "bug" even though both bouts of dehydration were brought on by a change in diet. The doctor who makes rounds of the pediatric ward, who has seen him since he was brought into the Westchester ER on Tuesday disagreed with the GI doctor. Her and the metabolic doctor are leaning towards a severe allergic reaction especially given family history but they admit it could be something else; this made me happy because they are looking beyond the obvious answer, unlike the GI doctor.

They talked about getting a cardiologist consult but it never materialized. Our pediatrician was super concerned about the heart rate spike in the ER; it was just way too high for just slight dehydration. There is adult on-set heart disease on my mother's side of the family; but you never know if my son will decide to break the mold.

My mother (I'll call her Gramma D in this blog) spent the the first two nights in the hospital with me, and a few hours after she left my husband showed up. A high school friend also showed up and brought me food.

Destructo clinging to Daddy

They took Destructo off his IV fluids for a few hours to see how he did, and he did pretty good. Despite how sick he was, he didn't sleep much. Every time I managed to get him to sleep, the nurses would come in to check his vitals. I spent a lot of time carrying him and walking the halls of the floor, singing the ABC song or Twinkle Twinkle Little Star, or whatever else my sleep deprived mind could manage to remember.

At this point it started to look like Destructo is allergic to soy. Even though he wasn't allergic to it when he was a week old, it could have happened anyway. His enzyme tests came back normal. And we can't test for it until he's older.

So I was told to keep Destructo on the Nutramigen. His godmother picked up two canisters of the powdered Nutramigen, that should help a lot. He had a great appetite in the hospital, but the bowels on the other end took about two weeks to return from a melted milkshake state to normal baby poop.

And even though they think there is nothing wrong with his heart, Destructo was supposed to get an EKG just to be safe because of that crazy spike in the ER at the local hospital. They gave the children's hospital one that was supposedly his, but the pediatrician said it had the wrong name on it. Now, the local hospital, being so tiny doesn't have the best reputation, and because the pediatrician is also from that area, she doesn't trust that they didn't screw up either. The hospital had us stay a few days beyond his improvement just to make sure he really was doing better before discharging us.

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