J-tube

Well it's been a few days since I've made it to the computer. There wasn't much to report. As we had expected, the j-tube and lung flush were NOT done on Monday. We did find it rather odd that they would last minute on a Friday say they were going to do it, especially when they had no time or doctor book and no room in PICU books. All this was left to be scheduled for Monday morning ... and we knew full well it would never happen, I would have been more suprised if it did then that it didn't. We were somewhat happy for the delay as there were too many unanswered questions.

The J-tube change was scheduled for Tuesday at 1pm and the Lung Specialist could not be there that day, so another bronchoscopy and flush were out of the question. Instead he ordered that the anesthetis do a small flush to get a sample from his lungs so we can see if there is any improvement in the bacteria we are treating ... or if anything new has surfaced.

We were not totally upset about not getting another lung flush done as we had a chance to speak to the Lung Specialist and found that he wasn't doing a more thorough flush, but was just taking another peek so see what had happened with his lungs in the last two weeks and reattempt another stain. Nice to know, but not necessary and we wonder how much we can keep subjecting his lungs to. Although the Lung Specialist did say that the stains "suggest" PAP he came back singing a bit of a different tune on Monday ... still insisting that he thinks James has aspiration pneumonia (inflammation in the lungs due to reflux/aspiration) and not PAP ... and here we thought we were finally make progress with him. We were begining to think our 2nd opinion from SickKids wasn't as necessary anymore, but now we're glad we're going. If anything, hopefully this specialist will talk "english" so we can understand everything, or more anyways.

Our Lung Specialists also said that even if James does have PAP he would not do a Whole Lung Lavage (WLL) at this time as he does not think his lungs are bad enough to do this. We also requested having a biopsy done via a bronchoscopy (called a transbronchial biopsy) as further research told us that PAP is usually confirmed this way and not through a Open Lung Biopsy. But he told us these biopsy usually come back insufficient and still insists on an Open Lung Biopsy. So for now we wait ... wait to see what Toronto says, wait to see how James does.

I asked our Genetic Doctor today what his opinion was, as I know he feels this is PAP. He said he has not had a chance to sit down with a pathologist to go over it, but had read that the results suggest but do not confirm PAP. He also said that the tests have been sent on to Toronto for a second evaluation ... hopefully something will come of this. He also questions how much is reflux versus PAP ... he's on the same track as us, but unfortunately not being a lung specialist he can't do much to change things.

So Tuesday was J-tube day ... but first Monday I had to chase down a few people regarding what exactly they were putting in. We had waiting around all day Thursday and Friday for Radiology to come talk to us, but it never happened. In the end they never did Monday either, I instead asked to have the g-tube nurse I knew contacted. She did come and although she didn't know a lot about J-tubes as there are not very common and usually done by radiology she was able to help. She spoke with radiology and came to tell us there was no tube the proper size for James except the same tube we had before. We had heard of having the tube stitched down, but also that this is not a very reliable answer either, unless it is a special tube designed to be stitched, and these aren't. We refused to have the same tube again, they would have to come up with another solution. So she went back to radiology and came back to say they had found a MicKey Button tube that was a bit bigger then his last MicKey, but should work. The next day 5 minutes before the procedure the radiologist came to talk to me and informed me that he did not think this tube would work. It would be fine for going into his intestine, but the little bit of extra size at the top could mean leakage problems. I had to make a decision, give it a try or have the original type put in, they had nothing else available.. Since the original was not an option I felt we would have to give this one a try and hope by filling the balloon a bit more it would not have leakage problems ... time will tell.

I am happy to report that all went very well for the procedure. They still had to use a lot of anesthetic to keep him under, but no problems like last time and he was done and awake within an hour. He woke up calm this time and remained calm, no screaming and crying and confusion. He spent the rest of the day staring at the TV and slept through the night. He did require to stay on oxygen afterwards, but we were able to take him off this morning. He remains mellow and so far has spent most of the day in bed watching TV, only spending 15 minutes in the playroom ... after a slow walk there ... definitely different then the active boy everyone is used to. He is slowly progressing towards full feeds and then will likely be on 24 hours feeds for a bit before we start seeing if he can tolerate less hours and have more daytime freedom. So far he is tolerating feeds well and things are going good.

After 5 1/2 weeks we are hoping to be discharged on Friday. Tomorrow is our big day to Toronto. We don't expect a whole lot to come of this visit but it is a foot in the door. The doctor made room for us to get in this quickly and has expressed interest in the case, knowing only the basics. We will be bring all the files and images with us, so the doctor will not have had time to review everything before hand and give us a clear idea of what he/she thinks. At the time of setting things up we also did not have the results from the bronchoscopy, altho the doctor was informed that it is believe James has PAP, so hopefully this means he/she has done the research or already knows something about PAP and will be able to provide us with some answers/ideas. James seems to be doing well enough that we will have a day pass to go to Toronto, if anything happens that he requires oxygen then they will do a OPT (Ontario Patient Transfer) via ambulance, but would prefer not to as they are not reliable on getting you there on time.

There have been several times where we thought we were almost ready to go home and something happened to change this. Please pray that all will continue to go well and this time we will truly find ourselves home as a family again soon.