It’s was a crazy long day yesterday and we received some really good news late last night. While we never received a phone call from his doctor, I did finally get an update via The My Chart app, as to the results of Elliott’s recent Whooping Cough test. You can see the results for yourself below. Negative… ☺
This is awesome news. Unfortunately, he’s still sick with something but at least it’s not Whooping Cough. The antibiotics seems to be helping and his cough sounds Croupy. He would need to be on antibiotics for that anyway.
He’s still running a fever as of 1:30 AM. I only know that because he’s unable to sleep and that was something we checked. His last day of antibiotics is today and he shouldn’t be contagious anymore, if he ever was but he’s still got a ways to go before he’s back in his feet.
While we’re super grateful that Elliott doesn’t have Whooping Cough, we do have a new problem. It’s new in the sense that it’s been awhile since we’ve seen this.
Mr. Emmett is in a fever flare. It began last night and he’s in a lot of pain as a result. For those of you unfamiliar with this story, Emmett has a rare fever disorder called PFAPA. Since he was very little, he would run idiopathic, high grade fevers for about ten days. It would stop for about three weeks before starting all over again. He’s had surgery to help and in some way it has but in other ways it hasn’t.
He only rarely runs dangerously high fevers anymore and they are no longer on the same very predictable schedule. He does however, breakout with very painful mouth sores and they last about a week. He’s in a horrible mood because he’s miserable and depending on how bad things are, he will miss school.
We did recently learn that this might actually be something called Cyclic Neutropenia. It actually fits better and makes a lot more sense. This came up during Gavin’s last hematology appointment when the doctor was collecting medical history. We need to speak to Emmett immunolgist next month about it.
Anyway, Emmett’s absolutely miserable and having a hard time eating.
I grabbed this picture because Emmett asked me to take it so he could get a closer look. I thought it would be helpful to share because it can help put what he’s going through into perspective.
He will get these sores all over the inside of his mouth and down the back of his throat. It’s awful for him and he’s miserable for the week or so they’re present.
During this time, Emmett becomes increasingly more difficult to manage and it takes a toll on everyone. Stress seems to be a trigger, although that could simply be a correlation and not causation.
Anyway, we pretty much jumped out of one frying pan into another.
I’m so grateful Elliott’s not dealing with Whooping Cough but we’re now looking at a week of hell while Emmett is stuck in this latest fever cycle.
Hopefully, everyone will be better by Thanksgiving..