CT Scan and Lung Specialist Visit

It's hard to say whether todays visit brought favourable results. I guess it's easier to say that they didn't bring unfavourable results.

James did relatively well for the CT Scan. He lay nice and still. He had to have his hands up over his head, but he did okay with this also. He cried throughout the scan, which made it a bit harder to get a good pictures, but they were happy with what they were able to get. We were very thankful that he was so cooperative and hopefully after a few times of doing this he will be more calm knowing that it won't hurt.

Because James' last CT Scan was done at Mac on a different system our doctor was not able to pull up the pictures of both scans and look at them side by side, instead she had to go by memory when reviewing them. She felt that todays imagine was about the same or maybe slightly better. Of course we would have liked to hear that there was an obvious improvement, but what we did hear today can still be considered positive. In March and June James had CT Scans done and the June CT showed significant progression of the PAP. This was over a three month period. So that fact that todays scan was not worse is considered positive. Another thing to consider is that previous CT's were done sedated and todays was done unsedated. Unsedated makes the pictures less clear because he will still have slight movements, and the fact that he was crying makes it even worse. So todays pictures may not be as clear and with that in mind could be better then we think.

Based on this we cannot say for sure that the GM-CSF Treatment is actually working, but at the same time we cannot say it is not working either. She felt it was still early and there is no reason why we can't carry on with the treatment. At the same time she felt it was too early to make a call to move on to doing a Whole Lung Lavage (this is where they wash out the lungs), especially considering the risks of this procedure, which she was clear in pointing out that these risks include death. If successful this treatment could be very beneficial, but at this time we are not out of time and options and so we do not need to move to such a dangerous procedure. The plan is to carry on with the treatment for another two months. They will re-evaluate each month, doing another CT Scan at the end of two months.

It is felt that James' vomitting is indeed related to his treatment. This in light of the fact that recent vomits have been more of a white foamy phelgm or phelgm chuncks and less bile. The foamy phlegm is characteristic to PAP. Likely he is throwing out the bile because he is heaving so hard. We discussed the G vs J tube. She still maintains that James does not need a J tube ... but (yes, there always seems to be a but to make decisions so much harder) ... our concern is that if we go back to a G tube he may start hurling out his feeds, thus losing precious calaries. On that note, I weighed James yesterday and much to our disappointment he has not gained any weight but is still 10.7kg (23lbs 9oz). Today we measured James and found he has growned 3 cm and is 86.5cm. So in light of the fact that he is still not gaining weight we really can't afford to lose any of his feeds from him throwing up. As well, throwing up formula each day can get a bit hard on the esphogis. She felt that this concern about vomitting was valid but at the same time we have to bear in mind the moaning and groaning he does and how the tube is effecting him. She left it in our hands to decide what we would like to do, suggesting that it may be a good idea to wait another month before we pull the j-tube and hopefully by then the vomitting has settled a bit.

The J-tube can come out but we could end up with bigger vomits then. At the same time, each night we turn off James' pump for a period of time because he is moaning and so we are losing feeding time each day because of this. We will have to do some thinking and evaluating to decide if there is a way we change James' current feeding pattern to allow us to stop feeding him part of the night and so allow his stomach to digest the food in it before he wakes in the morning and throws up. The G-tube has the advantage of allowing more feeding flexibility, as well we were able to feed him at a faster rate allowing him more time off his feeds each day, which would mean we'd have more flexibility for taking him off feeds at night. Previously we strived to give him as many hours as possible off his feeds during the day because then he could run and play, but now that his is hooked up to oxgyen pretty much 24 hours of the day it really makes no difference if we feed him all day as well. We'll have to do some thinking over the next few day ... just never seems to be any straight forward answers around here.

We remain thankful that we did not receive a negative report today and continue to pray that the next couple months will bring a clearer and even more positive result. We continue to look to Him who is in control of all things, knowing that James is in His care.