Some Answers ... We Hope

So this morning I managed to track down our big-word using Lung Specialist and I think I followed some of what he had to say ... hopefully enough to make some sense out of what is going on. Guess it helps that I've had time to research some of the different concepts and so some of these words are not totally foreign ... and I can guess at the rest of them.

The Lung Specialist firmly believes that James' reoccurring fevers, cough, clear running nose, general irritability and hospitalizations are related to his lungs. The broncoscopy has shown them two things: chronic aspiration and recurrent infections. It is his belief that the first is likely causing the second. They found food and junk in his lungs as well as his airways being inflammed.

He advised that if we do not want to we do not have to carry on with the CT Scan and he can follow James with x-rays, but the CT Scan can give them a clearer picture as to the extent of the damage and inflammation in his lungs. As well, it would be good just to have on record for comparison in the future. We will move forward with the CT Scan, it is booked now and any little piece of information we can get to better treat this problem will be helpful ... especially if this is what has cause his instability for over half a year now.

So if James' lungs are indeed the problem then how do we fix the problem. James has now been on the antibiotic for his bronchial bacteria for a week and we have not seen any improvement, at first we even seen him get worse, and then he began to develop fevers. This giving us the indication that the antibiotics were either not working and/or we are dealing with two different things. I asked the doctor how we know his lungs are better (without doing another broncoscopy) and that the antibiotic is working. He said that you treat him and you see improvement, if you don't you try something different. So it looks like we have to try something different and tomorrow we go in for another appointment to determine what "different" means. He suggested we may need to change the antibiotic, or add another antibiotic to the equation ... oh his poor tummy and bum. We may have to look at inhalers, I'm hoping he means something different because what he's has now has been useless.

As well, James is currently taking Losec for his reflux. Losec reduces acid but it does not reduce regurgitation in the stomach, so it sounds like we'll be needed to add another medication to help in this area. The Lung Specialist did not have any results on the PH Probe test as this goes to the GI department, but the test wasn't really necessary (poor guy) since the broncoscopy clearly shows reflux/aspiration. He did mention that the endoscopy showed a little bit of esophagitis. After they did the endoscopy we were told they did not find anything significant, but we have an appointment next week to clear up those questions.

The other question we had was regarding James' IgG (immunoglobin) levels. When the Lung Specialist last spoke to Rob he said their were no auto immune disorders ... so what do the increased levels mean? He advised that they were looking for low levels, which would indicate a immune issue, but in this case James' levels were double what they should be. This happens when the body has an infection or trauma and so this would fall in line with the rest of the situation.

Tomorrow we go off for another appointment to see what changes are going to be made. I'm not sure why he needed to see James, as his lungs have always been clear when they listen (one of the reasons they never jumped on it as an issue) ... but I guess it's more for officialness.

This of course doesn't answer the diarrhea problems. Some of this is almost guaranteed to be from the antibiotics, but we were having trouble before that already ... just not near as bad. One improvement we did see from the most recent formula change is that it didn't make his bum so sore and the yeast settled down some ... but the diarrhea and mucas has gotten worse. Last night I gave up on his current formula and put him back on his old original formula. I'm hoping we'll at least get some indication as to whether it's indeed a formula problem, but the longer he's on antibiotics the longer it's going to take to get a clearer answer.

Our pediatrician called shortly after I talked to the Lung Specialist. By that time I had gotten my main answers, but we discussed everything, as well as James' ear tugging. She is going to go ahead and send him off to the specialist, just as I figured she would. She figured if there is anything we can do to ease his discomfort or help take questions out of the equation it would probably be a good idea ... and we can always cancel if he clears up. She also told me that they are having a "Meeting of the Minds" with all of James' main doctors sometime in the next couple weeks to make sure they are all on the same wavelength and aren't missing anything. It is comforting to know that this extra effort is taking to "coordinate" his care.

In the meantime, the fevers, crankiness and clinging have continued, although today was a bit better ... or maybe I've just gotten used to having him sit on my lap all day long! :)