An Update or A Rant, or Possibly Both.

Carter’s peace from pain lasted for all of 24 hours. WE learned after a GI appointment that he had a stool impaction. So we tried to clear it. With Milk of Magnesia. With Miralax. With enemas. With Dulcolax suppositories. He was taking Tylenol around the clock and Zofran to help him sleep. We had another x-ray done. The impaction was considerably worse. This entire time, over a week, we were trying to clear him out, and he was going. Apparently it wasn’t enough.  So we tried magnesium citrate. That’s the stuff they give before a colonoscopy to clear you out. IT still wasn’t working. He was still in pain. We saw the GI on Thursday, April 19. I practically begged him to admit Carter and clear him out at the hospital. I was getting scared doing this at home. He was showing dehydration signs and was still in a TON of pain. The doctor said to wait another 2 to 4 days. If Carter was still in pain, call and they’d get him admitted.

I called Sunday morning, as we hadn’t seen any improvement. They got us a room ready at 1 pm. We were checked in and settled by 2:30. IV fluids were started and blood work and x-rays were taken to give us a baseline to compare his progress. The process of cleaning him out involves placing an NG tube, a small tube inserted in the nose that goes down into the stomach, and pumping him full of a product called GoLytely.  This works similar to a garden hose on a dried up pile of dirt. It washes over the impaction, eventually ridding it all from the body. The first attempt at the NG tube was a complete failure. They used no numbing agent, couldn’t get it placed correctly and caused him to bleed. We made the decision to stop and see if it could be done with some sort of sedation.

The next morning we met with an amazing GI, or so we thought, who wanted to get Carter thoroughly checked out with GI, Endocrinology, Allergy and Immunology to help find both the cause for the impaction and look into his lack of growth. They were going to schedule a lower endoscopy as well.  The NG tube was successful put in the second time around using medication to help Carter relax.  The GoLytely was started Monday afternoon around 3:30.  It is supposed to take approximately 4 hours to work. It took TWELVE hours before anything happened. Is it because he was so backed up or because there is an issue with his bowls? We don’t know. Why don’t we know? That’s the BIG question.

The doctors were great, until I mentioned FPIES and specifically his shock reactions. Once I told them that, the doctors gave up on helping us in any way beyond clearing the impaction. The lower endoscopy was canceled. None of the specialists ever came to see us. The GI doctor NEVER came back.

It took 36 hours for Carter to clean out.  A painful process that I will spare you the details. Just know it involved full linen change of the bed every time he pooped. By Wednesday afternoon, Carter wanted to get up out of bed and play for the first time since we got there on Sunday.  He was feeling and looking so much better.

The pediatrician working at the hospital came in to get a progress report and to see about sending us home. What happened to the other tests they were going to do? What happened to the rest of his care? She told me that since he’s not really going into shock i.e. anaphylactic shock, that I was unnecessarily restricting his diet. That his FPIES diagnosis wasn’t a REAL diagnosis at all. His impaction was purely my fault for not feeding him and his lack of growth was due to malnourishment.

She went on to say that we needed to have him followed by a GI doctor who could help figure out his digestive issues and make a real diagnosis.

                Oh, you mean the GI doctor who told us he was growing fine and to just keep doing what we were doing? The GI doctor who told us there wasn’t anything wrong with him? Ok, I’ll make another appointment.

                Have we tried Elecare Jr? Yes, he reacted to it. No, it wasn’t that he didn’t like the flavor; it made him throw up and poop blood. Should I have continued it?

                I asked the pediatrician if she’d like to call the doctor at Stanford who gave us the diagnosis. No, she didn’t think that would help her at all.

                She gave us the green light to go home and we RAN.  Carter didn’t fit into their little box of what was accepted, so instead of expanding their box to include him, they threw him out. They pushed ALL the blame on me and walked away. We have since filed a complaint with the doctors on staff and have a plan in place for any further visits to that hospital. I won’t have my child’s care limited because some doctor or 4, think I’ve made this all up. Type “FPIES” into any search engine and you can see it’s a real issue. The word shock sent them running. So call it whatever you like, but he goes completely unresponsive when he eats certain foods.

I will say that the rest of the hospital staff was amazing and made our stay as enjoyable as a hospital stay can be. We have since found another Endocrinologist who thinks that the fact that he hasn’t grown in almost a YEAR, is a BIG deal. She’s running some further tests on his liver function as well. She had the same blood work results as the doctors did in the hospital. The doctors looked at his numbers, with levels that were troublesome, and dismissed it all.  OUR pediatrician was outraged and dumbfounded that anyone could look at his blood work and growth chart and NOT see a problem.

We have an appointment with GI in June and appointment at Stanford with our Allergist in late July. We are also working on getting an appointment with a Stanford GI who might take this all more seriously. Otherwise we will go into our GI appointment in June armed with all the information she will need to take him seriously. Or we will walk out. The gloves are off.