afwdwfan
DIS Dad #460
- Joined
- Apr 23, 2010
Here's another quick mini-update on R.
The surgery was to repair a hole in his diaphragm and get his colon back down out of his chest cavity before it became injured and we had a bigger problem. Based on the images and what they had to work with in his original surgery, they were afraid the patch had come loose near his esophagus. The plan going in was a 3-4 hour surgery where they would pull his intestines out to get them out of the way and give them room to work. They were going to remove the old patches and completely re-do everything before closing him up. Due to the immense amount of disruption to his bowels, he had to go clear liquid and get cleaned out on Wednesday. They then put a tube in to drain anything that got in his stomach after surgery to allow his digestive system to recover from the shock of the operation and get back to normal function before he could eat or drink anything. With the amount of disruption they were expecting, they had told us it would be at least a couple of days before he could drink something and then we'd see about food based on how that went. They told us to expect at least a week in the hospital with a few days in the PICU.
As it turned out. the hole was just about a half dollar size spot in the middle of his patch that his colon looped up through. Gore Tex doesn't grow and they think he just grew faster than the small amount of diaphragm his patch is attached to could and it pulled it apart. Once they made the incision and saw what they were dealing with, they altered the plan. Rather than disrupting everything, they went over the top and pushed the colon back down and laid a new patch down over the top. We were kind of shocked when the nurse came to get us after an hour and a half and said they were closing him up.
He bypassed the PICU stay entirely. He couldn't eat or drink anything Thursday and kept asking for a drink. We could give him some water by sponge or let him suck on a wet cloth, and for 24 hours, that's all we did. He got upset several times Thursday night, like out of his mind screaming, hitting, kicking and biting and asking everyone for a drink. It was kind of frustrating that we couldn't give him more, given that his stomach was being pumped out and every time he sucked water out of a cloth we could watch it come right back out anyway. Friday morning the surgeon indicated that the disruption to his abdomen was a lot less than anticipated and he could tell that R was more upset by the tube and thirst than by pain or discomfort, so he ordered the tube out and said we could let him drink something. The nurse offered him a few choices and he spent Friday drinking apple juice, blue powerade and eating ice. Friday night was slightly better... slightly, but by then he was requesting food. Pizza. Mac & cheese. Nuggets. The usual. Saturday morning the surgeon visited and asked how he was doing with liquids. We hadn't had any problems and he was very gassy that morning (signs that things were moving along as they should) so he said we could order him some food for lunch. He handled it well and the peds doctor on the floor stopped by around noon and told us he was leaving it up to us, but we could go home Saturday evening if we wanted. R was still upset and would try to hide or start screaming when someone walked into the room with gloves. We kept asking if his belly hurt and he kept saying no, but was very restless and acting like something was bothering him (turned out it was sticky residue left on him by all the monitors and tubes that had been disconnected - his gown was sticking to him and he was getting mad every time he moved). We wavered back and forth, but just before shift change Saturday evening, we asked the nurse to start the ball rolling for discharge. We figured we'd have to wait a couple of hours for shift change to take place and told her that much, but she got on it and had us out the door in about 20 minutes. It was the right call. Ever since we got home, he has been so much better. He hasn't complained about any pain at all, he's been eating and drinking and doing great. We just have to try to keep him from running around and acting crazy... you know, being a 3 year old.
We had 2 absolutely sleepless nights at the hospital. We all slept all night Saturday, napped about half the day Sunday and slept all night last night. We needed it.
Again, thanks to everyone for all the well wishes for R and for the rest of us.
The surgery was to repair a hole in his diaphragm and get his colon back down out of his chest cavity before it became injured and we had a bigger problem. Based on the images and what they had to work with in his original surgery, they were afraid the patch had come loose near his esophagus. The plan going in was a 3-4 hour surgery where they would pull his intestines out to get them out of the way and give them room to work. They were going to remove the old patches and completely re-do everything before closing him up. Due to the immense amount of disruption to his bowels, he had to go clear liquid and get cleaned out on Wednesday. They then put a tube in to drain anything that got in his stomach after surgery to allow his digestive system to recover from the shock of the operation and get back to normal function before he could eat or drink anything. With the amount of disruption they were expecting, they had told us it would be at least a couple of days before he could drink something and then we'd see about food based on how that went. They told us to expect at least a week in the hospital with a few days in the PICU.
As it turned out. the hole was just about a half dollar size spot in the middle of his patch that his colon looped up through. Gore Tex doesn't grow and they think he just grew faster than the small amount of diaphragm his patch is attached to could and it pulled it apart. Once they made the incision and saw what they were dealing with, they altered the plan. Rather than disrupting everything, they went over the top and pushed the colon back down and laid a new patch down over the top. We were kind of shocked when the nurse came to get us after an hour and a half and said they were closing him up.
He bypassed the PICU stay entirely. He couldn't eat or drink anything Thursday and kept asking for a drink. We could give him some water by sponge or let him suck on a wet cloth, and for 24 hours, that's all we did. He got upset several times Thursday night, like out of his mind screaming, hitting, kicking and biting and asking everyone for a drink. It was kind of frustrating that we couldn't give him more, given that his stomach was being pumped out and every time he sucked water out of a cloth we could watch it come right back out anyway. Friday morning the surgeon indicated that the disruption to his abdomen was a lot less than anticipated and he could tell that R was more upset by the tube and thirst than by pain or discomfort, so he ordered the tube out and said we could let him drink something. The nurse offered him a few choices and he spent Friday drinking apple juice, blue powerade and eating ice. Friday night was slightly better... slightly, but by then he was requesting food. Pizza. Mac & cheese. Nuggets. The usual. Saturday morning the surgeon visited and asked how he was doing with liquids. We hadn't had any problems and he was very gassy that morning (signs that things were moving along as they should) so he said we could order him some food for lunch. He handled it well and the peds doctor on the floor stopped by around noon and told us he was leaving it up to us, but we could go home Saturday evening if we wanted. R was still upset and would try to hide or start screaming when someone walked into the room with gloves. We kept asking if his belly hurt and he kept saying no, but was very restless and acting like something was bothering him (turned out it was sticky residue left on him by all the monitors and tubes that had been disconnected - his gown was sticking to him and he was getting mad every time he moved). We wavered back and forth, but just before shift change Saturday evening, we asked the nurse to start the ball rolling for discharge. We figured we'd have to wait a couple of hours for shift change to take place and told her that much, but she got on it and had us out the door in about 20 minutes. It was the right call. Ever since we got home, he has been so much better. He hasn't complained about any pain at all, he's been eating and drinking and doing great. We just have to try to keep him from running around and acting crazy... you know, being a 3 year old.
We had 2 absolutely sleepless nights at the hospital. We all slept all night Saturday, napped about half the day Sunday and slept all night last night. We needed it.
Again, thanks to everyone for all the well wishes for R and for the rest of us.