Friday, April 27, 2007


In the beginning of October, we noticed some changes around his pump site. In the course of one week it rapidly changed. Normally, it looked like a hockey puck was sitting just under his skin on the right side of his abdomen. (I never realized just how big a hockey puck really is until he got his pump). But now it was swelling and the edges of the pump had lost definition. At first we thought the tubing that wrapped around to his spine had detached and was pumping medicine into his abdominal wall. It quickly began to look as if there was swelling - an arrow shape that pointed toward his left side.

I no longer had any doubts, it could not be fluid from the pump - it did not contain that much. The doctor told us to go into NeuroSurgery the next day.

I called Neurosurgery and was told to come in any time that day. First, I attended a previously scheduled IEP meeting to set up the perfect school plan for Tyler - it lasted 3 hours and left me feeling very optimistic for the school year. Then, I drove him up to the Children's Hospital. We arrived shortly after the lunch hour, and met with the Resident - who ordered xrays. We returned to Neurosurgery and waited, and waited, and waited. Finally, the NeuroSurg Resident returned, and because the tubing was shown to be intact he chalked the swelling up to - gas. Gas!

I'm no doctor, but gas does not wrap itself around an implant. I told him I just wanted to run Ty upstairs to check with his rehab physician - she is the one who recommended him for the pump surgery. She took one look at his abdomen and said there was no way that was gas. It was quite close to closing time, but she walked us down to Ultrasound to see if we could find any answers. The Ultrasound radiologist thought that he might have a 5 cm hematoma under his pump.

A CT scan was ordered. Immediately afterwards, the radiologist came out to the waiting room and said Tyler's doctor would be calling me. There was a mass under his pump, and it appeared that there might be active bleeding. The phone rang in the waiting room and I picked it up to talk to his doctor. She directed me to take him to the Emergency Room and have a surgeon look at him "just in case." I went to ER, was told to expect a 20 minute wait, and started walking to a corner of the waiting room. I didn't even sit down before they called us into Triage. I was informed that their physicians would determine whether or not a surgeon actually needed to see him.

By now it was about 8 p.m. and a wonderful nurse came in to assess Tyler. He noticed Ty's middle name, and asked if we were related to Tai (my uncle). His friendly, caring manner made a tense time much less stressful.

Shortly thereafter, a surgeon came in to Ty's room and said that his friend Dr. N, our doctor, had called him to express her concerns regarding Tyler. He looked at Ty's abdomen, alarmingly there was even more swelling than when we had first arrived. He then informed me that Ty would be undergoing surgery - tonight. in about an hour and a half.

Small tangent: I have brought Ty to the hospital many times. It has only been for surgery, because he is otherwise extremely healthy. I have always come by myself, (except for the first time) and I have never understood the mini-family reunions that seem to take place in the Surgery Waiting Room. They only allow one other adult to come with you, but some families have groups of 10-12 people camping out in there. Maybe it is a bit of envy on my part or just my independent nature, but I have never felt it necessary to be surrounded by others until the time I could rejoin Ty in Recovery. I have nothing against the people who do, it just seems strange to me. I am perfectly capable of keeping myself occupied while I wait for him to come out. Numerous projects have been read, knitted, or sewn to keep my hands and mind busy. I am incapable of just sitting there, there must be something useful I can keep myself busy with.

While I am more than willing to provide company for someone who needs that support, I do not feel that I need it. I guess I'd rather Mr. Triumph spend his vacation days on actual vacation with us, rather than as company in a waiting room. This time, however, was different. I was so unsettled. My perfect world with Tyler came crashing down around me, and I worried for the first time that I might lose him. I called Mr. Triumph and he rushed up to be with us.

The surgeons tried to make us feel as if everything would be fine, it was just a simple operation. They would go in, remove the pump temporarily, excise the blood clot, fix the bleeding gastric artery and then replace the pump. Worst case scenario, they would be unable to replace the pump and Ty would have to stay in Intensive Care for observation of baclofen withdrawal symptoms.

The anaesthetist came in and said she absolutely would not intubate him as he had had oral barium contrast in the past 4 hours. She mentioned a dangerous lung condition that could occur if he were to aspirate during insertion of his breathing tube. The barium would make his lungs stick together and it would be fatal. She didn't feel it would be ethical unless his life was at risk. The doctors asked her to step out into the hall. When they came back in, she had changed her position and was now willing to anaesthetize him.

We asked for a few moments alone with Ty. We prayed with him and I knew Ty would be alright. It was a bit unsettling, and yet I had some small peace in knowing that Tyler would not be going anywhere. at least not yet.

1 comment:

Adria said...

I felt a roller coaster of emotions just reading the post. I can only imagine what you were feeling. I hope you gave yourself kudos for forcing the issue when you knew there was something wrong.