January 10, 2014
Today, Rokus was scheduled for a surgery to dilate his esophagus and to swap his G tube to something a little lower profile. Because we expressed our concerns about a previous anesthesia gone wrong, the medical staff let me be with Rokie in the operating room as he got sedated. They also let us be with him as he came out of sedation. He cried very little pre- and post-operation. That was a great improvement since the terrible time.
The GI specialist was very pleased that a portion of the esophagus had remained dilated since almost two weeks ago which was promising. She did have some struggles dilating the stricture further down but they were able to make some improvements. They were able to dilate his esophagus roughly the diameter of a woman's ring finger.
After surgery, we brought him back to his room. There we played and hung a bit. While I was discussing some matters with the pediatric hospitalist, Rokus got nauseous and vomited all over my shirt. Turns out no one gave him Zofran to reduce nausea after anesthesia. During our talk, the pediatric hospitalist informed me it is likely Rokus gets to go home this Tuesday, but is still not firm yet.
Right now, in order to get Rokus home, we need to get his nutrition under control. He needs to be able to tolerate certain volumes and rates of formula. If he can do that, we can take out his Pic line. When his Pic line is out and he is stable, he goes home. His belly scar is healing nicely. His ostomy bags are still disgusting but they are working. His G-tube has a lot of pus, but the doctors say it will always be that way.
I had to learn how to give Rokus and Epogen shot today. I have to pinch a fatty part of his body and stick it with a needle. Trouble is, Rokus is underweight and has very little chubbiness or fat to poke with a needle. We ended up giving a shot in his leg.
January 7, 2014
Rokus has been slowly recovering from his Dec 27 surgery. The med staff has been recalculating his feeds, administering his meds, etc. We had to refigure everything in order to prepare for a homecoming. Right now, Rokus cannot tolerate large volumes of formula in short time periods so the GI team is trying to train his body to tolerate more food in shorter time frames. This is important because it is unrealistic to think Rokus will have an active feeding tube 24 hours per day. The nephrologists have informed us we will need to administer an injection medicine for Rokie 3 times per week. Surgery thinks he is healing well and they recently cleaned up the area around the G tube so everything is clean and tidy. Pediatricians want his nutrition stable and his vitals/electrolytes also stable before they want him home. We have asked for another team meeting and we will see what comes of it.
Family may reunite next week. We shall see how it all shakes out.
December 28, 2013
Rokus got a fever. Last night he seemed fine, or at least how the doctors expected him to be after a surgery. He'd sleep about 20-30 minutes then stir a little, grimace a little, and then repeat the process. He is clearly discomforted. I ended up letting him sleep on my chest for a couple of hours in the morning to relax him. He never really seemed to relax much but I think it made him happier.
In the early afternoon, I came to hold Rokie once Stephanie needed a break and noticed he was really hot. I checked his temperature, and, yep, he had a fever. I called in the nurses and doctor and immediately they began drawing blood, urine, and whatever else to test for bacteria.
After Olivia and I left because we were sick, Stephanie said Rokus' temperature dropped slightly but he's still feverish.
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