The days go by. The ear seems to be oozing less. Day 11 he gets a runny nose and watery eyes, its the summer here and pollen and allergens are all over the place, so I just give him so Benadryl. Then Claritin. The Nasonex...nothing seemed to clear it up. He was really restless that night, so he slept in bed with Daddy and I.
By morning he had a rash on his back and his eyes were swollen shut and felt a little warm. I thought maybe some viral thing, but sent him to the pedi to make sure. This was Day 12, but I didnt give him his medicine that morning...
Our Pedi said it was an allergic reaction to the Bactrim and to stop taking it and prescribed an antihistamine.
Six hours later we were in the ER at Texas Children's.
This was obviously a little more serious than allergic reaction, this was a little more than Skin Deep...
The first diagnosis was Serum syndrome due to the 3 different antibiotics he had been on over the past month. Then Stevens Johnson Syndrome was mentioned, but he did not have any blisters or lesions on any of his mucous membranes, so we stuck with serum syndrome but they were going to keep him overnight for observation.
That was a good call because an hour later he had blisters in his mouth. His diagnosis was now Stevens Johnson syndrome and he would be staying in the hospital for a few days, just until the swelling subsided...
The next day...
The 2nd two pictures he actually looked better than the first because the swelling had gone down.
But that night, the 'syndrome' must have kicked into high gear. He swelled back up and started having respiratory distress. His airway was swelling and he was having stridor(very hoarse, noisy breathing), and was screaming trying to climb out of the crib like his skin was on fire. An RRT(rapid response team)was called and he was quickly assessed and taken from the 15th floor to PICU...
He was taken into the OR to be nasally intubated so that they could suture the breathing tube to his septum because his skin was blistering and sloughing off at an alarming amount. The PICU is where we would spend our next 2 weeks.
Taken right after intubation from the OR
This is all I can write for now. This is a hard story to relive. Even though we are still on this journey and this was only 2-3 weeks ago, it all still feels so surreal. I keep looking at him now wondering did this nightmare really just happen to us? Did my beautiful baby boy really just endure all of this? I ask myself these things as I sit with him this afternoon making googly eyes at him and him laughing hysterically...
I will continue this story as I can, as the little man is taking up much of my day now :)
But I do want to again thank everyone for everything. I have never seen such an outpouring of love and prayer and gifts for a child, and I thank you. Kai is very special to us and apparently to a whole lot of other people. So, thank you.
