Many of you probably saw on our Jody Needs Lungs Facebook page that Jody was admitted to the hospital yesterday. This post will fill you in on all the details.
People often ask me how Jody is doing, and over the last few months my answer has been, “Pretty good, all things considered.” We’ve very much enjoyed the break from the hospital after spending so much time there late summer/early fall. Naturally we knew this break wouldn’t last forever and sadly it’s over, at least for now.
Two weeks ago Jody had an appointment in the transplant clinic. At that appointment his PFT’s (pulmonary function tests) were close to 30%. He was feeling a little tired but otherwise okay. Since then the tiredness has increased. We know that this can be a sign of a CF “flare-up” but it is so easy to justify that symptom away, chalking it up to him being more active. Nonetheless, we kept watch. We’ve since noticed that he’s been coughing a little more, feeling more chest tightness, headaches, night sweats, and even had some blood-tinged sputum. Those things combined, we could no longer deny the inevitable, and made the call to the CF clinic. Jody was asked to come in that day and to pack a bag because, based on his symptoms, he would probably be staying.
Jody’s PFT’s in clinic yesterday revealed a 4% drop (now at 26%) in a matter of two weeks time. This is a little alarming, especially when combined with the symptoms described above. The doctor was also a little concerned about his complaint of headaches, especially at night. Once again they suspect a build-up of CO2 (carbon dioxide). He currently sleeps using 2 liters of oxygen via nasal cannula, but it might not be enough. They mentioned possibly even using CPAP at night to keep his airways open should it be warranted. And so… to figure this all out, Jody once again finds himself at “Hotel” Hopkins.
The plan right now is round-the-clock triple antibiotics to fight the infection in the lungs, and arterial blood gases to confirm if his CO2 level is indeed too high. In addition to that he gets his nebulizer treatments two or more times a day, chest physical therapy and regular physical therapy three times a day, blood work, chest x-rays, visits from lots of doctors (this is a teaching hospital), and visits from the CF team, just to name a few. Even his physical therapist commented this afternoon on how many people were in and out of his room this morning.
One other thing I should mention is in regards to Jody’s future lung transplant. There seems to be disagreement among the CF team here as to whether or not Jody should be made “active” on the list. Some feel the time is now, while he is healthy enough to withstand the surgery, and others feel he should wait, so as to not start “the clock” (on Jody’s life) prematurely; hoping he might bounce back from this infection, buying him more time. It’s a fine line to walk, and I can argue both sides. Thankfully, I know we’re in good hands, that they’re keeping a close watch, and I pray that God himself will make it quite clear when the time is right.
There is no way of knowing how this infection is going to play out. It could improve with the current antibiotics and we could get another break from hospitals. Or, on the contrast, it could be the beginning of more to come, which would indeed push us one step closer to transplant. As I’ve said before, only time will tell.
Now you’ve been updated and know a little better how you can pray for us. Thank you to those of you who have already been doing so, it is always appreciated. Thank you also for reading. I’ll keep you updated as able and if anything changes.
CF Wife 