Well, what is worse than going to the Emergency Room on the Friday night before Memorial Day Weekend? Try going to the ER twice in one day a week later! I’m beginning to wonder if Jenelle thinks the ER is her second home. We certainly have our own private doctor and nurse there who definitely remember us each time, which makes it easier. Earlier this week I spoke to Dr. Shields because Jenelle would not stop moving – it was as if she was in pain and/or irritable about something. I took a short video clip of it and emailed it to Dr. Shields, and upon viewing the video, suggested we stop the Dilantin, as the side effects can cause involuntary movements like the ones she was making. So Wednesday was her last day of Dilantin, then she started with periods of hysterical and painful crying where we could not console her. No fun.
Then, late Thursday night, Jenelle had blood in her stool. Not just superficial blood like from constipation and/or hemorrhoids, this was dark stool with lots of blood. On top of that surprise, she has been so not normal lately – crying one minute, to laughing hysterically the next. I knew we had no choice but go to the ER, but just in case I called the doctor on call. She told me even if a “normal, non-special needs” child had blood in the diaper, it was an automatic trip to the ER. So, I got there around 11:30 p.m. (Brett stayed home with Jack) and the doctor did some blood work and started an IV. He suspected her “electrolytes were off” and said the blood work may tell them something if she was bleeding. I brought the diaper with me and everyone agreed it was a lot of blood in the stool. Unfortunately, they couldn’t get a sample from the diaper I brought in. At first the ER doctor said she was going to be admitted, but later around 5:00 a.m., he told me her electrolytes and blood work were normal so there was no use admitting her just to get her to poop for a sample! So, we left around 5:30, and slept most of the morning. Of course, Jenelle was still irritable and crying off and on all day – at this point she was refusing food. Later that evening around 4:00, we still did not have a poop sample, so I called Dr. Patel. When he called me back and said he was shocked they released her and instructed me to return to the ER and insist on a full work up with ultra sound and x-ray, and to insist she get admitted until we figured out the problem.
So, I packed a bag expecting a long weekend stay at CHOC, and made it back to the ER to find our favorite nurse on her “second shift!” In case anyone goes as frequently as we do – ask for Rachel, she’s the best! This time they ran an x-ray which showed little stool and no significant bleeding. Then, the doctor we had that morning saw me in the ER and was surprised to see me back, so he suggested we order a head CT to see if there was fluid on her brain. If her meningitis from two weeks ago had not resolved, now is when we’d see problems. The CT Technician was confused and asked why we came in for “rectal bleeding” and we were getting a head CT! Of course that came back normal. Finally we insisted that we weren’t leaving without her pooping, so they gave her an enema, and they got their sample. No blood this time! So we were sent home with a diagnosis of “altered mental status” due to her bouts of crying. Fortunately, I had left messages for Dr. Shields with information about all that was going on, and he wants to see Jenelle on Monday afternoon. If it is a new “mental status” then I suppose seeing him is the best answer!
As I’ve typed this, Jenelle has been crying hysterically the whole time. You cannot imagine how helpless we feel. I hope we figure out something soon. Oh yes, tomorrow morning, Jenelle is having her Kidney ultra sound and Kidney Reflux test. Should be an extra busy day. Her G-tube surgery is scheduled for June 15, and I’m hoping to bump that up. Please keep us in your prayers that we can resolve whatever is causing her so much pain. I’ll keep you posted...