This is not the post I wanted to write.
Yesterday, my daughter, A, went into the hospital to close the hole in her throat where her tracheostomy used to be. She was decannulated last July, and although she's had no trach in a year she still had the hole. So yesterday was the surgery to close it up. While she was under anesthesia, her opthomologist did eye surgery on her to correct her lazy eye, or ambyopia (she was going to correct the up and down AND the side to side muscles, but ended up only doing the up and down ones....baby steps, she said).
The surgeries went great. Both doctors came out and gave their glowing reports. They were happy. I was happy. I couldn't wait to go back and see her in the recovery room when she woke up.
Finally, I got called back. A was doing great! I was able to hold her on my lap, and cuddle her. She asked where her Daddy and brother were. She asked for one of her books to read. She took a few licks of a popsicle. She got feisty and wanted the sat monitor off her finger. She pulled it off, and the nurse put it back on. This upset her. As I was holding her, her breathing began to sound weird. The nurse didn't seem concerned, as her sat levels (oxygen levels) were fine. But she started to act weird...trying to get off my lap.
Within a few minutes, they were ready to transfer her up to her room. They wanted to put me in a wheelchair and put her on my lap and wheel us up. I got in the wheelchair with her on my lap, and A started to REALLY have difficulty breathing. It sounded like a cross between a hiccup and a gasp. She put her hands to her throat, which the nurse interpreted that she was going to throw up. But I looked at A's face...and was shocked. Her face has ballooned to about 3 times its normal size. It looked like she had mumps....her face was sooooo puffy and was cheek was so huge and distorted that it reminded me of the Elephant Man. Her neck and chest were puffy too. All of this happened in what seemed like 30 seconds. Very quick.
I yelled, and the nurse took one look and shouted for backup. We put A back in the bed, and immediately a whole team of doctors descended upon my daughter. They gave her oxygen and I heard the word "intubate"...and then they kicked me out, back to the waiting room.
The next hour was one of the worst I've ever experienced. I didn't know what was happening with my baby. Horrible thoughts were going through my mind. What if she had to have her tracheostomy put back in? What if she's lost too much oxygen and had brain damage? What if she died?
After what seemed like an eternity, we were brought back to a consult room. Both a pediatric surgeon and an ENT (not her usual ENT, as our doctor who had just done the surgery left immediately after the procedure to catch a plane!). They had taken a chest x-ray, and all looked good. They had also done another bronchoscopy and her airway still looked beautiful. All great news.
They diagnosed her with pneuomothorax...in which air got into her body (through the delicate tissue in her newly closed stoma) and couldn't get out. Coughing could do this...and although she hadn't coughed, she WAS upset earlier about the sat monitor on her finger, and I'm wondering if her getting upset didn't trigger this. And when the nurse put the oxygen mask on (standard procedure) it was the wrong thing to do in her case as it added more air into her. To treat her, she's now intubated with a tube down her throat, and she has two chest tubes. The tubes will slowly leak the air out of her.
She is in ICU and will be for the next few days. They want to keep her under sedation, so she doesn't mess with the tubes. This will also give her body time to heal. I want her HOME! Her 5th birthday is next Thursday, and I want her home by then. I am just so grateful that this episode happened in the recovery room. A few minutes later and we would have been up in a regular room, with no quick response team, or even worse, in the elevator. It could have gone really, really wrong....she could have had a collapsed lung, or cardiac arrest. She didn't. So while I'm sad she's going through this, and I desperately want her home, I'm grateful.
The art of the deal: special needs child version
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