The Big Meeting

This morning James doctors' met together at 9am. They managed to get all the key doctors together, although not all could stay the entire meeting. So they had his Pediatrician, Lung Specialist, GI doctor, Genetic Doctor, Dietician, OT (Occupation Therapist) as well as the Team Doctor and Resident (those are the ones that he is under while an inpatient).

After they met I was able to meet with them once they had done their diiscussing and come to some sort of conclusion. The biggest problem is that we still do not have all the results of the bronchoscopy, thus leaving us to speculate on some important issues. It is hoped that these results will be in by the end of the week ... we won't hold our breath.

At this time is seems that the doctors are sort of expecting (or at least seem to be leaning toward the idea) that James does indeed have Pulmonary Alveolar Proteinosis (PAP), but yet they (as well as we) believe that aspiration/reflux is still a contributing factor to his problems. It is felt that maximum treatment needs to be done in order to stop this and help to restore/heal the lungs before they are damaged beyond repair.

It is felt that there is no point going back to a GJ tube (actually techincally James just had a J tube, altho everyone has been calling it a GJ - a GJ allows you to feed into the stomach and the intestines, a J only allows into the intestines). Although they said it is still our choice to go this route, they did not feel it would be a long term solution. This is partly because the J tube is hard to keep in place, altho there are better tubes then the one we had (why they didn't put a better one in remains an unanswered question), is known to clog more often or to coil up and come out of the intestine. So it's unpredictable how often we would need to replace it ... and considering James' track record with anesthetics we can't be doing this all the time. At the same time James did not have the J tube long enough to see if it was any benefit to him. What we do know is that it is not helping with his deSATing issues, yet it can still be useful to control reflux. We had just reached full feed requirements when the tube came out, what we noticed that day was more mucasy diapers and he got a rashy bum ... something he hasn't had since coming into hospital. This would not mean we'd rule it out as with James' mucas and red bums are part of his life ... but it's questionable when it's been going good for so long. The overall decision was to look at a more long term solution.

And what is a more long term solution? Fundoplication surgery. In this surgery they wrap a part of the stomach around the esophagus to strength the valve and help stop reflux. I was not surprised this came up as it had been suggested before as the last step ... but unfortunately I also have not had time to do any research on it, so I was not able to come with full and complete questions on this decision. The questions I did have they could not answer and said a surgeon will be better able to explain and answer my questions, all they really knew about was the results of the operation and claim that it is not an uncommon survery and is usually effect as well as long lasting ... altho it can loosen and be required to be done again. We will have to do some further research before making a clear decision ... altho it is apparent something needs to be done and our options are limited.

Together they are in the works of trying to arrange a patient transfer to Toronto Sick Kids for a second opinion. Didn't we ask for this about 3 weeks ago? At that time we were told it was not urgent enough to do as a patient transfer ... now there seems a change of opinion. So they were on the phone with Toronto this morning hoping to get an answer to if this is possible and when ... so far we haven't heard any answers. If they do manage to arrange it as an inpatient transfer then they hope to also arrange a visit with the Genetics Team there as well. Hopefully they'll be able to get something together so that we don't have to wait months for another opinion.

They have also told us that there is still a possibility we will be looking at an Open Lung Biopsy, but nothing further will be decided or pushed that way until we get the bronchoscopy results and a second opinion. If the bronchoscopy shows PAP then it will not be needed, but since the special "stain" they sent away to get the PAP result is very sensitive a negative result will not necessarily mean he does not have it ... and so they will want to do a biopsy to get clearer answers. We are praying the bronchoscopy will come through for us as this is no minor surgery, especially when factoring in James' anesthetic track record. They bring this to our attention now as they would like to combine this is a Fundoplication surgery if that is the route we have to go ... therefore one anesthetic and one surgery healing.

Treatment for PAP was briefly discussed as well, but obviously we'll get into that further if that is indeed what he has. The main treatment for this is called a whole lung lavage, which is basically a very, very thorough cleaning of the lungs ... and what does this mean ... more anesthetics. The Lung Specialists was suggesting he'd need this every 3 months ...altho our research showed every 6-12 months, sometimes less often, it's very hard to estimate. And hopefully if his reflux is under control the lungs have a better chance to fight this. But since nothing is confirmed yet we will not spend too much time dwelling on it.

It was also agreed that the prednisone does not seem to be helping and so we will be weaning James off of this medication ...yahoo!!! Since this is steroid you cannot just stop it immediately as it can have very adverse effects on the body, so it will be a slow process to get him off of it, but at least we're heading that way.

So ... I think I've covered it, or at least tried to in the little bit of time I have. Yesterday we did manage to go home for an LOA ... I was so tired my only goal was to sleep, but James had quite the opposite idea ... and so instead I wasted my time trying to get him to sleep so I could sleep and in the end neither of us slept!! James and I had an enjoyable visit with friends from the Chatham area in the evening ... thanks guys, the visit brightened our day ... to bad Rob wasn't home!!