Taking a break from a walk for a quick selfie
Praise God we are finally seeing some progress again! Jody’s biopsy on Tuesday showed unspecific diffuse alveolar damage (basically lung injury), but no rejection! We were happy to hear this news. In the last two days Jody has made huge progress, particularly in his breathing. I’m quite shocked at the difference of a few days. Today he was on 0-1 liters of oxygen at rest, and tolerated that well, keeping his O2 sats 88 or above. He does still need the increased oxygen concentration for walking (50%), but even with that his sats are not dropping nearly as much as they were previously in the week. I can’t tell you how great it is to see this change. It was miserable watching him so, so short of breath. There were about two days this past week when Jody felt like giving up. Thanks to the prayers of many, calls from friends to encourage him (even at one o’clock in the morning when he needed it), his inner strength, love for his little girls, and ultimately, The Lord, he was able to pull through. His transplant recovery is far from over, and we’ve learned that things can change very quickly, but we are celebrating his turn-around. Today when he was out walking in the hall it seemed like all the staff in this busy ICU stopped to smile and comment on his progress. Their cheering was genuine and it encouraged Jody to strut his stuff all the more. They’ll be calling him ‘speed walker’ again in no time.
Now that we know the issues Jody has been having are not the result of rejection, there are mixed opinions on the actual cause of this set-back. Theory #1 is aspiration. Jody drinks a 16 oz. weight gaining shake before bed, he’s done this for as long as I have known him. When he was granted permission to start eating again he began drinking his shakes just before bed as usual. After that he laid down flat (or near to it), and went to sleep. None of us (myself or the nurses) gave it much thought. The thought behind this theory is that his shakes refluxed up his esophagus and back down into his lungs without him ever knowing it happened. This is why they call it silent aspiration and is the result of the damage done to his nerves during surgery. Aspiration then leads to infection. Infection wrecked havoc on Jody’s new lungs.
Theory #2 is that Jody’s downfall was solely the result of infection (no aspiration whatsoever). The reason some doctors hold this opinion is because of the damage done to both of his lungs. If aspiration was the root cause, some say the damage would have been primarily in his right lung instead of both. CFer’s (people with Cystic Fibrosis), especially in end stage, harbor bacteria in their lungs chronically. When that bacteria flares up they typically feel sick and need to be hospitalized, as Jody has been many times in the last few years. It could be that some of the old bacteria got into his lungs during the surgery itself (although I believe they do a cavity washing to prevent this). Another possible source of transmission could be from Jody’s sinuses which might harbor some of the bacteria of his old CF lungs. Of course it could also be something he picked up elsewhere which is easy to do when so immunocompromised.
Whatever caused the infection that wrecked Jody’s new lungs, we’ll never know. At this point the important thing to focus on is that they’re getting better. His chest x-ray is looking better when compared to a week ago, and his breathing is much improved as well. He’s still not back to where he was before this bug hit him but that will come, slowly but surely. It’s possible that Jody might even be transferred out of the ICU tomorrow, which we’re really excited about.
We’re so glad to see Jody’s lungs improving but he still has some other bothersome issues that we’re waiting to see improve as well; twitches and hallucinations. The doctors are looking into medications to help with these effects. Yesterday they did finally take him off Voriconazole, the med they felt was causing the above issues (switched him to something else), and said it might take 4-5 days for this med to clear his system completely. I hope they are right because I know it frustrates Jody to not always know the difference between what is reality and what is not. I feel bad that he is experiencing this but I’ve had plenty of inward laughs about some of the things he’s been saying. Just now, as I type he was picking at his pulse ox probe and talking about the “red mat cardboard that’s underneath it.” Next came the milk he was “drinking upside down.” It seems he never gets a break from the visions in his head. It must be horrible to feel like you’re going crazy but I know that he will laugh at this one day when I tell him stories of things he said and did. One final note about the above medication change is that since the Vori was stopped yesterday Jody reported his vision was slightly improved today. Hopefully this will only get better and better as the drug leaves his body.
The lack of food and drink is also starting to wear on Jody. It might be another week before they allow him to have another swallowing evaluation. Pray that he can make it that long on ice chips alone.
Progress is being made at last. Here’s to hoping it continues, and we take more steps forward than back.
CF Wife 