December 7th 2010: A Date Which Will Live in Infamy

Monday, December 6th at 9pm; when I was getting Anthony ready for bed, he didn’t seem like his usual happy self. He had had a good day at school, but now he was diaphoretic and weak. I thought maybe he was hot, as he was wearing sweat pants and a sweat shirt and had a comforter over him. I got him undressed and checked his temperature. No fever and he seemed better after I cleaned him up and hung is nighttime feeding.

The next morning he still didn’t seem right, lethargic and his muscle tone was low, which is unusual for him. Anthony is usually very stiff due to his CP. I figured he was coming down with something and decided to keep him home from school.

At 6:30am, when I went to flush his J-tube, blood started to drain out of the tube. Obviously, this was more serious than a bug, so I called 911. We got to the hospital around 7:30am. An interesting side-note: One of the paramentics who came to pick up Anthony fainted. They had to call a second ambulance for Anthony, so we had two ambulances in front of our house. I’m sure the neighbors were curious. The second ambulance took Anthony and the first ambulance took the EMT to the ER.

When we got to the ER, they took vital signs and started an IV. Anthony’s pulse was elevated at 130, but he does tend to run high. We explained Anthony’s situation several times to a nurse to a resident and to anyone else who came into the room.

Anthony’s labs came back normal and his vital signs were stable. The ER consulted with Anthony’s GI doc who ordered his Prevacid increased to 30MG twice a day and to see him in his office on Thursday. The attending came in to tell us the plan. I was shocked! There was no way I was going to take Anthony home with blood pouring out of his J-tube. Plus, he was acting sick, so I knew something was wrong. The attending asked, “How much blood?
“As much as you want, just disconnect the tube and it drains blood.”
I unplugged the J-tube port and again blood came pouring out of the tube.
“OK, that’s enough, I get the point” said the doctor, obviously surprised.
“Did the resident see this?”
“No, but I told him what was going on.”
“Well, seeing is believing…” she said.

After seeing the blood, they ordered abdominal x-rays and a surgical consult. The x-ray was unremarkable, but Anthony was obviously getting worse as the day went on. His pulse was now in the 160’s. Other signs remained stable including his BP. The surgeon felt that Anthony had some sort of irritation / inflammation going on in his bowel, but not something that needed surgery. They started talking about admitting him for observation.

I should say at this point that the obvious concerns I had were a bowel obstruction, perforated bowel or necrotic bowel. All serious issues. But then nurse/moms are also good at imagining all kinds of problems.

The doctors did not feel that Anthony had any of these things, but I was not convinced. He was getting sicker and sicker by the hour. He had been his usual self on Monday, he went to school and was happy, now he was in obvious pain, bleeding in his bowel and his pulse rate was now running between 160 – 180. Although Anthony cannot talk, his facial expression and pulse rate were telling us he was in pain.

Since Anthony was in obvious discomfort, they decided to get a CAT scan to get a closer look at his abdomen. We could tell by the look on the resident’s face that the CAT scan did not look good. They ordered labs repeated since apparently the blood from the first tests had been partially hemolyzed and might not have been accurate. Anthony is very tough to get blood out of. They ended up sticking his femoral vein and even that took several tries.

The surgeon was called back in and after seeing the CAT scan, he sat us down to go over the options. Nothing could have prepared us for what he had to say.

From the lab tests, Anthony symptoms and the CAT scan, it appeared that Anthony had perfuse damage throughout his intestinal tract. The surgeon said that there wasn’t a single area that he could “fix”. Usually in cases of obstruction, perforation or necrosis, that part of the bowel can be removed and a colostomy can be performed, or they can do an anastomosis (remove the bad section and suture the ends back together). In this case, the CAT scan showed swelling and white spots throughout the entire intestine, which looked like massive tissue damage. There was also fluid (presumably blood) in his peritoneal cavity.

They could do an exploratory surgery, but it was unlikely that they would be able to repair this type of damage. If the damage was very bad they would do nothing and close him up or they might remove too much gut and Anthony would end up being a “short gut” patient, meaning he would never be able to absorb nutrients via his GI tract.

We were given the option to do the surgery or “let nature take its course”. The doctor asked, “Do we really want to put a kid like Anthony through this major surgery?” Anthony was very sick and likely would not tolerate the surgery well. The probable outcome was grim and after the surgery, he could have a long and complicated post-operative course. He would likely have an infection. They may not be able to get him off of the vent. This could easily lead to a downward spiral. Did we want him to come home on a ventilator and TPN (total parenteral nutrition)? Did we really want to put him through this?

While the doctors were clear that this was our choice. We got the distinct feeling we were being discouraged from doing the surgery. Maybe the doctor was trying to give us the worst case scenarios? Regardless, the prognosis we were given was very grim indeed. We were heartbroken.

Rich and I had no trouble deciding to do the surgery. This was an easy call for us. We needed to know exactly what we were dealing with and the only sure way of knowing was to open him up. We were also asked about DNR status. We made it clear that we wanted everything done for Anthony until we had reason to think otherwise.

Anthony was taken to the OR at 9:45pm Tuesday night. As we sat in the surgical waiting area we were both feeling numb. To me, this all seemed like a nightmare. Everything happened so quickly. I was having a typical morning getting the kids up and off to school. Just hours later one of our boys was on death’s door. It just seemed unreal. This had to be a nightmare. What would we do without Anthony? How would we tell his brothers? I felt like I was going to be sick. While I wanted to know what was wrong with Anthony, I was dreading meeting with the surgeon after the operation, because I was afraid to hear bad news. We were thinking that the longer the surgery took, the better. At least we would know they were doing something.

The surgery took about 3 hours. When the surgeon came out to find us, we were the only people left in the waiting room. As he walked across the room, he said “he’s OK”, before he even got to us. Turned out that the “necrosis” he had seen on the CAT scan was actually air in Anthony’s bowel. Anthony had developed a rare complication from the GJ-tube. His small intestine wrapped around the tube and caused a kink in his bowel (volvulus). This cut off the blood supply to the intestine; a segment of his bowel was necrotic (dead from lack of blood flow). The surgeon removed 135cm (about 1/4th of his small intestine) and then sutured the ends of the healthy bowel back together.

With a situation like this, the longer it takes for a patient to get to surgery, the more the intestine dies. In the words of Anthony’s GI doctor, “Time is Bowel.” Had we waited much longer – or done nothing at all – Anthony surely would have died. Although he is still a very sick boy, this was really the best possible outcome. Anthony’s problem could actually be fixed! Now there is a possibility that he will have a full recovery. “He is not out of the woods yet,” we are told. But we are just so happy that he is at least in the woods!

To be continued…