Mind Overload

Well it seems my mind isn't functioning properly anymore after the doctors threw a new loop into things this morning, the sum of which brings no new information; it just revisits old information and brings back those old feelings of this summer ... of having to review and review all that happens and research and research and question and question, not simply because there are no answers, but more the issue of not being confident in the answers the doctors are giving ... and maybe things just won’t add up. Nothing makes any sense, everyone is stumped ... I feel like we're reliving the 5 weeks we spent at Mac this summer. There was such relief when we got answers when we first came here, like we were finally moving forward and could finally focus on the issue at hand. That has all been taken away again. I suppose it's been obvious for the last two weeks that there's more to this than we original thought, but there was always that small hope of the last few setbacks being resolvable.

This morning the Lung Specialist doing the procedure came in to say that after much thought yesterday he's not completely confident that PAP is the issue here. Further results from the previous lavage have come in, wrenching uncertainty into everything since these results are not supporting PAP to be the sole issue. This new information points to aspiration pneumonia (when food comes up and then goes into the lungs…see here and here for past discussions on this). We've been down this road before when they insisted James' problems were aspiration pneumonia and would not acknowledge results supporting PAP. (Philosophy buffs will note the fallacy of a false dichotomy). Although they are prepared to do another cleaning tomorrow, there is a possibility that after first viewing the lung with their camera, they may decide a lavage is not necessary and just take samples for further testing instead. This suspicion of aspiration has induced the talk of once again putting a j-tube back in, since this can help eliminate aspiration and help determine if this is an issue. Our notes on when the last one was in do not support their ideas at this time, but we'll deal more with that if the issue seriously arises.

The biggest issue that arises from this new thought is that since there isn’t a clear way to diagnose aspiration, it's mostly a guessing game involving trial and error. There are several tests that can be performed:
PH Probe:
o This involves a probe sitting in his esophagus for 24 hours, recording acid levels.
o previously done showing some reflux
Upper GI Series:
o a series of x-rays on stomach, capturing the operation of the stomach and its contents when food enters it
o this test has not been done
Swallow Test:
o A series of x-rays on his throat, capturing the operation of that little valve on the windpipe, to see if food leaks into the windpipe while swallowing.
o This was previously done, but showed nothing abnormal).

These can give an indication but are not very accurate at diagnosing, because he may not actually aspirate during the time the test is running. It’s like taking a picture of a family. They are all smiling when the shot is taken, but those smiles can be long gone before they leave the studio. We do know that James has at least a mild form of reflux (when food comes back up…think of persistent heart burn) or even possibly aspiration, but there have never been enough signs to indicated that it is a serious problem. I will not bother going any further in depth about all the arguments that can support or not support their thoughts; we'll wait to see what tomorrow brings.

Once again the doctors are thoroughly stumped and have no idea what to do or how to proceed. I think the big hope is that some magical answer will come from tomorrow’s procedures. The GI department heeded the final boarding call and is now adrift with everyone else, and will be performing an endoscopy tomorrow. However, due to James' C.Diff they do not feel a colonoscopy will give accurate information at this time, so it will have to wait until another time. With regards to the PICC Line, we are told it cannot be coordinated with the other procedures, likely it is performed in another section of the hospital, whatever the case at this time we're no longer sure if it's needed as we have stopped antibiotics and have no idea what we're dealing with anymore.


So although these are just their thoughts it gets our minds running again, going back over all the information we went through before. All the time we were at Mac and they tried to convince us this was his problem we could not agree with them and felt like we were constantly fighting with their one track thoughts. I hope that we don't find ourselves stuck in such a position again as there's no place to go anymore to ask for a second opinion. At the same time, we take great comfort knowing that we are at the best place we can be, and we can truly see the difference of Mac and Sick Kids. Sick Kids is a place where they truly want to learn, to understand, to research and try put the puzzles together. We did not get that feeling at Mac; there we felt like we were the ones who had to do the research and pushing for tests.

Today was a busy day, right from the moment I woke up ... boy do days like that fly by so much faster. I had a pleasant visit today with friends, but especially with a little guy named Matthew. James' home-nurse was one of the ones who came today and since she knows him fairly well I could leave James in her capable hands for awhile and go out for a walk and shopping with Matthew. Unfortunately I couldn't be gone long as we had a flood of doctors all morning and I was waiting for more for the afternoon. On top of that my mind was also busy thinking on a phone call Rob received this morning from the Faculty Office. It seems they have taken note of his situation and have offered that should he need to drop out, and with the proper medical documentation, they will refund him (usually you can only be refunded if you drop out within the first two weeks) with no consequences on his transcript. This leaves much to think about. He is 2/3 of the way through the semester, but is unable to fully concentrate and so his marks are suffering. It becomes a question of muddling through the next month or dropping out for this term, or this year and coming back next September. (Rob's editorial note here: If in September, when we debated what direction to go, if we knew then what we know now, the answer would have been obvious. But now, after putting all this work and effort into it, the scale isn't so clearly off balanced. Is it pride, or ambition, or the opposite; stewardship that desires to plod on. This reminds me of what a pilot told me when I asked if a twin engine plane could fly on a single engine. His reply was clear: "The remaining engine will take the plane to the crash site." If it is pride, I plod on to my own undoing. If it is stewardship, is the eject button ever not an option?)

And so I end another long-winded entry. We pray the Lord will guide the hands of the doctors tomorrow and most of all we continue to pray for answers. Maybe someday our minds will be able to rest from the constant medical information flowing through it, and find the mundane details of life refreshing.