In Which We Meet Fred

We thought we were dealing with a blood clot the size of a softball - it had to be removed and any bleeding stopped. The surgeons did tell us that were risks involved, as there are for all surgeries. Namely, that if the blood entered inside the abdominal cavity, it could cause a blood infection where his organs were. The pump might be wearing away an artery - too big of a risk to leave the pump in. They definitely considered this to be an emergency situation in which the only choice was to operate, we could not afford to wait the four hours the anaesthetist needed in order to feel comfortable. He went in for surgery at about 11:30 p.m.

We headed to the Surgery Waiting Room which had only one other family there. I remember it quite clearly, there were two women and one man and a young girl of about 4 years of age. I don't believe they had a child in surgery, they were just hanging out. They were very loud and the girl was constantly running around and pretending to play on the computer. Her mom, in an effort to get her to behave, picked up the phone and made a call.

"Hello, police? My daughter is very bad, would you come and pick her up and take her to jail?"

The daughter was crying and begging her mother not to let the police come get her. "No, mommy. I'll be good, please don't let them take me."

"Oh, yes. She's being very naughty and needs to go to jail."

I couldn't believe it. The poor little girl really thought her mom was sending her off to the police, she was crying and begging. The mom was trying to keep up her serious front - it was incredibly cruel. I was so glad when they left. Goodness, tuck that baby into bed, no wonder she's misbehaving - it's the middle of the night!

Only one other person came in, a housekeeping staff member who tucked himself away into one of the computer booths to surf the internet and make personal calls.

I tell you about this bizarre waiting room experience because I couldn't believe that people were still living their lives and ours had seemed to stop with the possibility of losing Tyler. Finally, Mr. Triumph and I were alone. We talked about our feelings and both of us felt Tyler would be alright, but the surgery was taking longer than we thought it would. I wondered if they had needed the on-call general surgeon who specialized in abdominal surgery.

About 2 a.m., the Neurosurgeon came to tell what had happened. There was no blood clot. They had opened him up, removed the pump, and saw muscle with blood vessels and meaty looking tissue. The doctor said it looked like a placenta or a liver. (I have to admit, when I heard the word placenta, the first thought that came to my mind was "Alien!" and I dubbed the strange discovery "Fred." Later, I found out that Mr. Triumph had also thought of the movie Alien).

He went on to explain that they had had the on-call surgeon look at the tissue, he had never seen anything like it either, so they took a small biopsy and closed him back up. The biopsy site, 1x1 cm, bled about 8 ozs. They were very afraid that exploring further would introduce blood where they didn't want it, and they had been unable to find the bottom of the mass. It was not 5 cm in diameter at all, it was 10x10x 6 cm. Huge!

Since Ty's pump had been removed, he would be transferred to Intensive Care to watch for signs of baclofen withdrawal. The surgeon assured me that otherwise Tyler was not a sick kid. Also, he told us not to be alarmed, but that the mass was so large that it looked as if the pump was actually still in place. He sort of chuckled at this point and told me that he'd really taken it out and could show it to me as proof.

Tyler had 15 staples closing the incision and a surgical drain. And it looked like he had swallowed two hockey pucks!

The withdrawal process was difficult for him, but I think it was mostly due to the Ativan they were using to combat the symptoms. He had high blood pressure, but otherwise was fine. My mom stayed with him that Sunday so I could go home and visit the family. She happened to notice that he was quite calm until about 20 minutes after he had been given the Ativan. She suggested that they switch him to something different, and it worked. There were no rooms on the floor, so he stayed an extra night in Intensive Care. Fortunately, that has been the only time he has ever been in ICU - and it was really just for precaution's sake. A girl had been in there the week before and had her pump out. She had a horrible withdrawal experience and needed to be in ICU for an entire week. It made them gun-shy, but I'd much rather have a physican err on the side of caution than not.

Ty had to go in for one more surgery to remove the catheter tubing that had connected the pump to his spine. There is actually a one-inch piece still in there, they could not free it from the tissue. He did well, but they had forgotten his tape allergy and used it to keep his eyes closed. His face swelled up like a water balloon and he broke out in a rash. Nothing a little Benadryl and some steroids couldn't fix.