On Tuesday morning, it looked a bit worse, but after school it had really gotten bigger. It looked like there was a bubble under the skin of his tummy next to the pump. I called the doctor and told her it had nearly doubled. She told me to be sure to call Neurosurgery the next day and have him seen. That night it looked so bad that I called the Resident Wednesday morning at 8 AM. He told me to call and tell the office to work us in.
First, I went to his IEP and it lasted 3 hours. Then we went to Neurosurgery in the afternoon where they ordered xrays to make sure the tubing from Ty's baclofen pump was still inserted into the intrathecal space in his spine. When those came back, the Resident said the catheter tubing was intact and the swelling was probably due to some gas and stool in his bowel. He thought we ought to go home and come back if it got worse.
I didn't feel good about it. Something just didn't feel right so I went upstairs to see Doctor N. and get a second opinion. She took one look at it and said, "There's a mass here that is not air or stool." By this time it was 5:45 and she was due to go home, instead she ordered an ultrasound which showed a 5 cm mass under his pump. She then ordered a CT scan with contrast.
She had to leave right before the scan at 6:30 PM. When it was finished, the radiologist came out to the waiting room and called Dr. N. and handed the phone to me. She told me to go directly to the ER and ask for a surgical consult.
I checked in and the ER staff said it would be a 30 minute wait, but before I could even sit down they called us back. They told me they would decide if we needed a surgical consult or not. Next thing I knew the surgeon was there saying they were going to take it out. From the scans, it appeared that he had a blood clot the size of a softball. The plan was for them to take it out, stop the bleeding and put the pump back in. My husband came up in time to give Ty a blessing.
There were all kinds of risk involved: if the blood was inside the abdominal wall, it could cause blood/infection to be in where his organs are, also the pump might be wearing away an artery, and have to come out. Then the anesthetist said she wouldn't operate because he'd had barium within the last 5 hours (by now it was 10:45) and it could be fatal is he aspirated it.
The surgeons asked her to step out into the hall and when they came back in, she'd changed her position. They'd. said that this was an emergency situation and Ty couldn't wait the four hours the anesthetist felt was necessary. This is when I knew, despite how calm everyone was, that this was serious.
They got done around 1:30 or 2 AM. There was no blood clot. They opened him up, took out the pump and saw muscle with blood vessels and "meaty" looking tissue. They realized that somehow the pump was reacting with the muscle and the pump had to come out. They removed it, which meant that Ty had to go to Intensive Care because he was at risk for baclofen withdrawal. They took a biopsy of the mass and sewed him back up.