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.