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Anthony Bissell

Anthony – and his Intestines – Moving Forward

Anthony is making nice progress. It’s hard to believe he was on death’s door a week ago today.

Last night he started on small amounts of g-tube feedings at 10cc per hour. He tolerated that and is now getting 20cc per hour. He also had a bowel movement last night, so looks like things are moving along the GI tract.

We are not sure when he will be able to get another GJ-tube. This is a question for the surgeon. I assume he will want to be sure Anthony is well healed before placing another tube. In fact, we’d like to try going back to the g-tube, perhaps at a slower rate and different formula. We don’t want to risk aspiration, but we are also not keen on another GJ-tube. He is also still getting TPN via the central line.

Anthony had a renal ultra sound last night because of blood in his urine and a high BP while in the PICU. We expect that to be normal as his urine is now clear and his BP is fine.

Anthony has a congested cough, but he is moving air well and his O2 saturations are fine. We are not sure if the cough is just typical post-op stuff or aspiration. Hard to tell. Of course reflux and the danger of aspiration was the reason for the GJ-tube to begin with. We’ll see how it goes. But this will likely be addressed by weighing the pros and cons; benefits and risks…


Update on Anthony

Anthony came out of surgery around 1am and was settled in the PICU by 2am Wednesday morning. He was sedated and on a ventilator with lots of monitors and IV bags all around him. It was so nice to see him without pain and resting, even if it was a drug-induced rest. He was on Versed and Morphine to keep him comfortable.

We left the hospital at 3am; I slept from 3:30 to 5:30. I got up, got the twins off to school and headed back to the hospital. Rich and I have to take shifts, since Nana can’t manage Eric alone.

When I got back to the hospital Anthony remained stable and comfortable. I was invited to join the nurses and doctors for rounds, as they discussed Anthony’s plan of care. This was a pleasant surprise.

Later in the day, the head of the PICU came in and asked how things were going. I told him I thought it was great that parents were invited to rounds (just for their child, of course). He said it was something they were trying and asked if I found it too technical. It was not too technical for me, with my nursing background, but I’m sure it would be for some parents. Anyway, this was a big help to me and would save them time answering my questions.

Some of the staff had been involved with Anthony’s case the day before and they were very happy that things turned out to be better than expected. A nurse practitioner said that she felt so bad for us as Anthony was taken to the OR.

Anthony now had the peripheral IV that was placed in the ER; he had a triple lumen central line, and a femoral artery line. He had two foley catheters, one draining his bladder and one draining his stomach. They obviously had to remove his GJ-tube (gastrostomy-jejunostomy tube) and they put a regular catheter (G-tube) in its place. He had a large abdominal incision that is stapled together. They would be monitoring his labs closely and watching for signs of hemorrhage and infection.

Later in the day on Wednesday, his H&H (hemoglobin and hematocrit) were low. They felt that this was due to excess fluids rather than bleeding, but they decided to give him a blood transfusion, as it would help him either way. He received 2 units of blood without any problems. They also cut back on his fluid intake and his labs gradually improved. There was a parade of doctors, nurses and therapists in and out of Anthony’s room all day.

On Thursday, they cut back on his pain meds and took him off of the ventilator. Getting off the vent is a huge step forward. The femoral line was also removed.

On Friday he continued to improve and we even got an occasional smile out of him.

Today, he had some blood in his urine, probably due to the urinary catheter, so they took that catheter out. He is scheduled to have a bladder ultrasound tomorrow, to be sure there is nothing else going on. Today, he was started on TPN (total parenteral nutrition), which is nutrition via the central line. He does not have bowel sounds at this time, but hopefully his intestines will wake up and they will be able to try g-tube feedings soon.

We are not sure yet how to deal with his feedings. We are not thrilled about the idea of putting a GJ-tube back in, but if we feed him via the G-tube, we are risking aspiration (which is why he got the GJ-tube to begin with). We have been discussing this with his surgeon and GI doctor.

This evening he was transferred out of the PICU and onto the pediatric floor. This is good news for Anthony, but we will miss the excellent 1:1 care he received in the PICU.


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…


Update on Anthony

Anthony had a rough time this past winter. He seemed to pick up every cold that went around and also had increased problems with gastric reflux (stomach content backing up into his esophagus). At times the reflux was so bad that you could see the Pediasure bubbling up in the back of his throat. Add to this Anthony’s neurological impairment, muscle weakness, cognitive and positioning problems and you have a recipe for disaster. Reflux in children like Anthony often leads to aspiration pneumonia and even death.

After trying a few medications with minimal improvement, we were left with a couple of options. First is a procedure called a nissen fundoplication, a surgery in which part of the stomach is wrapped around the lower end of the esophagus and stitched in place. This tightens the sphincter between the stomach and esophagus to prevent stomach content from backing up. Anthony had this procedure when he was young (before he joined our family). Because he had already had the surgery once, he probably has a lot of scar tissue in that area, which would make the surgery more difficult.

Nissen Fundoplication

Another less invasive option is to try a GJ-tube (Gastrojejunal tube). Anthony already has a g-tube or gastrostomy tube (feeding tube into the stomach). So we decided to convert his G-tube to a GJ-tube. Anthony had the G-tube to GJ-tube conversion Wednesday (June 30, 2010). Using x-ray images for guidance, a radiologist threaded a long feeding catheter into the current g-tube site, through the stomach and into his small bowel. By feeding Anthony directly into the small intestine, this should greatly reduce the chances of reflux and aspiration. It took almost 2 hours to get the correct placement of the tube, but he tolerated the procedure well and so far he is tolerating his feedings. It’s a triple lumen tube, one port goes to the stomach, one goes to the intestine and the 3rd is to fill the balloon which helps to keep the tube secure.

GJ-Tube placement


Xray used to help guide the tube into the small intestine. (The rods and wires are from Anthony’s spinal fusion)


Anthony being cooperative as usual. No sedation needed.


The disadvantage to feeding directly into the small intestine is that feedings have to be delivered slowly. Unlike the stomach – which is a pouch to hold food – the small intestine doesn’t have any storage space, so feedings have to run very slowly. Basically, Anthony will be fed 24/7 in order to deliver enough calories. Also, if this tube gets displaced, plugged or pulled out or when it needs to be replaced (every couple of months or so) this will involve going to the hospital. With the g-tube, I was able to change the tube myself at home. However, these disadvantages are minor if this new tube prevents aspiration.

Hopefully Anthony will have a healthy summer and we can get enough calories into him so that he will gain some weight. He is out of school for the summer, but we are hoping to have him strong enough to return to school in September.