James' Visit to the Lung Specialist

Another day at Mac. Today James had to go in to see the lung specialist. This appointment was booked in December after he had the influenza. At that time they had wanted to follow up and see what his lungs look like when he is healthy, since all current x-rays are from when he's come into emerg. and is sick. Unfortunately, today's appointment did not bring the results we had expected ... it also left us rather confused, or at least as good as uninformed.

I gave myself an extra 15 minutes this morning just to find parking at Mac. Usually I park on the streets, but for the "winter" (that is when it's actually winter-like out there) and knowing this appointment would be way over parking limits, I gave in and decided to park in the garage ... I guess more people think like me since between that and the fact that they are doing repairs to the South garage it's impossible to find parking there now ... even the triple parking is full at times. After 20 minutes I finally managed to get a spot in the triple parking area when they opened it up again for a few minutes.

So I arrived late for our x-rays ... not that it matters since it wassn't actually booked, but simply a walk-in service. Well today it mattered since the computers were down due to a virus and there was a very long wait as they tried to work around it. This in turned made me late for my appointment with the doctor. Can you tell how my day was going??

Anyways ... thankfully we didn't have to wait long for the doctor ... although I wished we had to wait a bit longer so Rob could have been there for the whole appointment. Rob came as soon as his class was done, but we were just wrapping up our appointment by then. We have met this doctor before when James was in hospital (in December) and at the time we thought he was just in a hurry that day, or having a bad day ... guess not ... same thing again today. He talks so fast it takes every effort to keep up with what he's saying, he uses all medical dialect and doesn't explain any of it. When you stop to ask a question, he hardly answers it or he actually just ignores it and carries on with his train of thought. By the time he stops long enough to take a breath he's given you mounds of information to digest and you're still trying to format it so you can ask questions. By the time you've done that he's already way into his next speal. Get the idea of where this is going?? Last time Rob and I were both there and after he left we tried to process what he had said and between the two of us probably got about 50% of it. So being on my own this time, with James at the point where he had enough, I'm lucky if I caught 25% of it ... and after trying to ask a few questions and not getting any help I finally gave up and just listened as best I could.

So as you may have gathered I really can't explain the results of todays visit very well ... but I hope to get in touch with our Ped in a few days, once she gets the dictated notes, and ask her to help clarify. Next time I may have to consider taking a recorder along :)

So what did I get out of the visit?? First and most important is that the x-rays of James' lungs did not come back as the doctor had hoped. Since the computer were down he could not look at past x-rays to say whether it actually looks any better at all, but he took one glance at them and started in on how they didn't look as they should and gave the heads up for what we were going to have to do. There are two options; either put him on prednisone for a month and see if his lungs improve, or do further investigation. I don't know enough about what prednisone would all do, but I do know it's used when trying to get asthma under control. My only thought in that regard is that we give him Flovent and Ventolin when he's having breathing difficulties, and both of them do absolutely nothing, so I'm not sure prednisone would be different. But from reading up on it it seems to be much more extensive than the puffers. This Dr. did not think the prednisone would work; he gave some reasons but I can't remember what they were, but they made sense at the time. This leaves the second option.

We know that interstitial lung disease has been reported in other LPI patients, but we can't just say it's an LPI issue and leave it at that without investigating to see if there is a seperate cause. Investigation may also give better indications on what the best way is to treat James' case. Previously doctors have always given us the indication that this is something that can just be monitored but it wasn't at the stage that we needed to investigate. This is why I was a bit suprised with the conclusions of this visit. I figured he would look at the x-ray, say see you back in 6 months for another view and that'd be it. Wrong. At this time they are going to run him through the roll of tests, everything except the actual lung biopsy, with the hope that something will come up so they don't have to do a biopsy.

What are the tests and what are they looking for? This is where I got even more lost. He ran off different names and what they are looking for, but I didn't catch half of it. A few things I can remember is that they are looking at possibilities of vasculitis, which is an auto immune issue, chronic pnuemonia, silent reflux and chronic infection. He listed two other things but I can't remember what they were. The one that stands out to us is the chronic infection, mostly with the hope that this could explain his unexplained fevers and hospitalization, always involving breathing difficulties. I can remember a few tests, but not there proper names or what exactly they hope to gather from them. They will be doing another CT Scan of his lungs. This won't really tell them anything except give a better picture for reference. I don't know the name of the next test, but it involves flushing out his lungs. I'm not sure what information they hope to gather from this, once I get the name of the test I can look it up on the internet. Both of these mean he has to be sedated. So the Dr. is getting in contact with our GI doctor to see if this can be coordinated with the endoscopy on March 7. He also mentioned he would need to contact and coordinate with GI because some of these tests involve GI stuff (not sure what those ones are, or how they connect). They also hope to do a 24 hour test for reflux, if I'm thinking of the right test then I belive this is called a PH probe test. I'm not sure how reflux can cause the lung disease, he didn't explain that, or if he did, I missed it. Maybe I'll go back and ask the wall to see if it caught any of it. The last test I remember is more blood work, mostly auto immune blood work.

So the sum of the visit is that his lungs don't look as they would like and further tests need to be done to determine if they can find an answer. He clarified several times that it's quite possible no answer will be find and we can only say it's LPI related, but they need to investigate before they can leave it at that. Our poor guy, more tests. I hope they can coordinate everything for one day ... and please, no fevers this time!!

After our appointment, we went on to get blood work done. I had planned to get blood work done today anyways. Originally I intended to go in next week and get it done so that it would be ready for his next genetic appointment, but I figured I was there now, save myself an extra trip. Just our luck, another 45 minute wait, but at least Rob was there this time so it went faster since I had someone to talk to and I was still trying to figure out our appointment and regurgitate it to Rob. We never stop being amazed at how good James is. After all the pokes and prods he doesn't scream or kick up a storm. He knew exactly why we were there, and still he sat there quietly while she got all the tubes ready for the blood, He even pulled up his sleeve to indicate where they could poke him!

James slept almost instantly once we got back to the van. I arrived home with a monster headache, which made me very thankful ... not for the headache, but it was a reminder of how little I get them now. After years of struggling with daily headaches I can now say that I no longer get them daily, not even weekly anymore. This headache made me feel like a wimp because I just wanted to crawl into bed. Funny how if you get relief from something you can't handle it as well when it comes back. A couple times this year I did have them daily again for 3-4 weeks and then they suddenly disappeared. There's no real explanation as to why they are not as frequent or what makes them come back, we've sort of figure it's a combination of my jaw finally get a bit more strength and healing and probably also due to some vitamin supplements I've been taking (headaches disappeared shortly after I started them). Whatever the case I have much to be thankful for. And most of all I think that it's really not the treatment I had or what we've done, but it's the Lord's hand helping me through this year. I don't know how I would have survived with the headaches on top of everything else.

Can't sign off without a picture. This one's a classic. We always struggle with ways to entertain James and keep him confined when we're at other peoples houses during feeding time. On Sunday we were at my parents and we managed to rig up the portable pump on the back of the car. It worked great, he could zoom all over, he had a bit of length yet to get off and play close by the car and would climb back on and carry on to the next thing when he wanted to. Too bad our house is too congested for that ... not to point out the novelty would wear off if we did it all the time.



I had one other appointment and a meeting this week ... but I've babbled on plenty long enough for today ... I'll tackle those next time as they're really not completely James' related.