CT No Go

We were suppose to have a Pediatrician appointment today, but I decided to cancel since there really wasn't anything that needed to be dealt with, especially after she called me last week. I had kept the appointment just in case and also because James' g-tube site has been acting up lately. It's been somewhat unstable for a couple months now (in comparison to the months before that) and I've been faithfully cleaning it with salt-water. Last week I started cleaning it more often and also adding polysporin cream with the hope that this would tame it. But still not much change. It's been flaring up really red and pussy and then tames down a bit in the redness, but always lots of puss. When it's red you can tell it's a bit bothersome because the second you go to change him and open his undershirt he's got his fingers in there digging the puss off. They had said that the site will always have it's ups and downs because it's a foreign object in the body, my only concern was that he's suppose to have the tube changed next week and I really don't want to hear that they can't do it because it's not healthy. At the same time, even if I took him in today I was a bit late as he'd need a 10 day shot of antibiotics if they really thought it was an issue. But wouldn't you know, yesterday and today it looked quite nice, or at least reasonable, again. Fingers crossed it will stay like that for another week ... not likely.

When I spoke to our pediatrician last week she had sort of handed the reigns back over to the Lung Specialists office to continue to get the lung tests scheduled for the same day as James' endoscopy. So now it was back in my hands to chase after them and make sure they were doing their job. I called yesterday morning and at least it was obvious they had been working on it since they right away knew who I was and what I was talking about. She did not have the final answer yet, but called back this afternoon to let us know that the broncoscophy/bronchoalveolar lavage is a go, the CT Scan is a no go. Anesthetics would not do the transfer from the endo department to the CT area. I'm not surprised, but still disappointed. This means another day and half shot for another Pre-Op appointment and then the actual procedure. It also means that James has to be sedated yet again, and starved again before the procedure. He doesn't like to eat, but that doesn't mean he doesn't ask for food and drinks. Let's just hope that this one will be scheduled for the morning, unlike next week which is for 2pm.

Tomorrow morning we have to go to have to go for his PH Probe Test. They will be putting in the Probe tomorrow and taking it out on Thursday morning. Last week we stopped James' Losec (reflux) medication, but have continued on with his night feeds. Wednesday night went fine, but Thursday he started coughing and crying at night which gives us a pretty good idea that we are on the right track. He has not coughed and cried every night but most nights mildly, and last night he was up coughing and gagging again for about half an hour. At this point I am not sure if we can start him back on his medication as soon as the Probe Test is done, he may have to stay off of it until after his tests next week ... the sooner we can get him back on it the better for all of us, he looks so sad and confused in the middle of the night.