Saturday, February 21

Greg's entry for Saturday Morning:
I decided to go over to the hospital early this morning since the doctors mentioned yesterday that they would do rounds early. This way Carey and Kyler could sleep in and we would still be able to know what was going on with Caden.

Caden had a rough morning today. The swelling in his belly has increased and there is increased redness around the G tube entry site. The general pediatric surgeons came by to check on him and they made the same observations that I did. They indicated they were concerned about a skin infection and they were going to start him on another antibiotic specifically for the skin. They also wanted to disconnect the G tube to prevent any additional pulling because of all the swelling. In addition they wanted to put in a NG tube to prevent any more air from building up in the abdomen. The root cause of all the swelling is the air in the intestines and unfortunately that will just have to subside on its own. As a by product of all this they will have to discontinue the medication they are giving him for pulmonary hypertension since it was going through the G tube. This is not a problem since he is on nitric oxide which is a more effective way to open up the vessels anyway.

I had been keeping my eye on his blood pressure since that has been a problem and I noticed that it continued to spike. The pain medication they had put him on last night was supposed to help this, but I was seeing the same type of spikes that were happening all of yesterday. The nurse had decided to give him another type of pain medication to put in his NG tube. This had the immediate effect of lowering his blood pressure which then normalized a few minutes later. However, after a few more minutes he dropped too low and the doctors were called in to correct the situation. They immediately stopped the blood pressure medication he was on and gave him fluids. He responded quickly to this and was back to a safe level though on the high side of normal.

From here they had to come up with a plan to manage the blood pressure without jumping from one extreme to another. The attending doctor was very clear that they needed to make small changes to medication and observe their effect so they did not end up chasing their tail all day. I appreciated this since I do not want him getting endless amounts of medication.

After the doctors left the nurse put in the NG tube and they suctioned him, which helped bring his oxygen saturation back up. He is effectively 30 hours post surgery and has not made it over the hump yet. I know he will get better, but it will just take some time. This is the “difficult” waiting as we do not get to hold him and touching him actually irritates him and causes his blood pressure to go up. He continues to fight and he seems to need a good dose of rest.


Carey's entry for Saturday Afternoon:
Later in the afternoon I went back to the hospital to check on Caden. When I got there, the nurse told me they had decided to put in a rectal tube to see if they could help get rid of some of the air in his bowels. She said it looked like from the x-ray, that there was a lot of air in the bowels and then it stopped before getting to the rectum, so it appeared there was maybe something blocking its escape. As she was explaining this to me, the attending physician came in and told me they were doing this first of all to see if they could reduce the girth of his waist. It had gotten 1cm bigger since they measured him this morning, putting him at 38.5cm! That is MUCH larger than he was yesterday. That was their main concern.

Then, the next thing they were worried about was the redness around the g-tube. They believe it could be a cellulitis infection. But, they are also concerned that the g-tube might be leaking and there could potentially be fluid draining into the abdominal cavity, which obviously is a very bad thing. In order to determine whether this is the case or not, they would need to do a contrast test and see where the fluid goes. If it is draining into the abdominal cavity, this would require opening him back up again to drain it and correct the problem. Obviously we are hoping this is not the case. But all the doctors are working together, pediatric surgery, Dr. Redddy and the cardiovascular surgeons, and the CVICU doctors, in order to identify and correct what is wrong.

I was there when the nurse put in the rectal tube and suctioned. A huge plug came out followed by 20-30 mls of air. The plug got stuck in the syringe and they replaced it with another one and continued draining. It appeared more air, etc. was moving through. It seemed like his girth diminished immediately, but of course, until they measure him again, it's hard to say for sure. I can only imagine how much pain Caden must be in. He has definitely been more agitated after this surgery than he ever was following his heart/diaphragm surgery. He doesn't seem to want to be touched at all when he's awake.

They had started his antibiotics to treat the infection around the g-tube. And, they had put him on different medication for his pulmonary hyptertension. Also, because of his vitals dropping when he was suctioned, they were sedating him before suctioning. So, they had given him morphine before suctioning him and putting in the rectal tube. But when he is awake, his blood pressure can go up quite a bit because of his discomfort. He must be in a lot of pain with all that air in his bowels and not being able to get it out. The good thing was the nurse said he had good bowel sounds and yesterday they weren't as good. That means he was improving after surgery, but it was taking time. No surprise, with Caden.

That's where things are at for now. They were going to monitor him overnight and see how the redness around the g-tube looked in the morning and would discuss whether or not to do the contrast test. And, they would re-evaluate how to proceed if his distended belly hadn't gotten any better either.

Greg just got back from the hospital and found out that Caden's girth had gone down from 38.5cm to 37.5cm. So that is good news. That happened in a matter of a couple hours. Hopefully overnight things will improve even more. They are not making any ventilator changes until they can get the other issues resolved. So, Caden definitely has a bit of a rough road remaining. But we hope it will pass quickly and we'll get to hold him again soon.