bravestredhead

Breathing Easier: (Friday Jan.2, 2009!)

In Uncategorized on January 3, 2009 at 4:13 am

Hi All,

Well, I just returned from the hospital where I have been spending most of our “holiday”. First off, I must apologize to the many of you who have written to the blog or phoned me for updates on Alex’s current progress. I’ve been remiss in my reportage, as it were. Quite frankly, I have felt this current round of Alex’s hospitalization to be very difficult, in that it has had a quite depressing “deja vu” about it, and the fact that it’s obscured the holidays has only added to this humbug feeling.  I must say that all of my positive energy has been going to Alex and only Alex (sure, a little bit for our dog Henry too, lest he become inconsolate) but that the end of the day I’ve not had a lot left to give anyone else (including myself). I am, in two words, burnt out. I really needed a little down time after Alex’s transplant and subsequent return home, and unfortunately this was not to be. Something had to give and I am sad to say, dear reader, it was this blog.

So I will get you up to speed, and hopefully set your minds at ease…

Alex is now off oxygen. She is walking much as she did a couple of weeks post-transplant. She still has a ways to go but the last couple of days have been encouraging. She is undergoing an anti-rejection bolus which will be followed by an antibiotic bolus. She has a picc line in her left arm to deliver the drugs. The high doses of anti-rejection steroids have temporarily given her diabetes, for which she is now receiving insulin (on a sliding scale and on an “as needed” basis). We don’t know if she will require insulin post-hospitalization but it remains a possibility. She has more energy this evening than she has had in the last ten days. Her appetite is coming back as the pneumonia is being treated aggressively. We even managed to have a really fun New Year’s celebration with some Chinese BBQ duck and streamers and horns and Christmas lights strung up around the room. She ate a good-sized dinner and we had a blast bringing in 2009, imagining the good times to come.

But here’s what happened at the end of 2008…

The doctors tell us that it is not uncommon for a Cystic Fibrosis transplant recipient to get opportunistic infection(s). CF had slowly ground Alex’s health down through her life to such a point that she essentially had nothing left to fight with. No arsenal, as it were. Transplant was her only option for survival. Picture a prize fighter who has just defended his title, but had the daylights knocked out of him as he did it. Now picture the prize fighter waking up the next morning and having to defend his title AGAIN. That’s where Alex found herself post-transplant. She was still carrying pseudomonas aeruginosa in her sinuses post-transplant, and this bacteria took advantage of her compromised state and colonized her “new” lungs, giving her double pneumonia. Fortunately, the new lungs have proven strong and with the aid of antibiotic therapy the bacteria has been controlled. But it certainly has been a scary ordeal. Alex was really wiped out by this. She watched all the progress she’d made after her transplant disappear in the matter of days. In fact, for a a few days there she was worse off than before her transplant. It has been very frightening for all of us.

Add to this the fact that the health care system essentially shuts down over the holidays (ie. no tests come back, skeleton staffs, no physiotherapy department to speak of) and you can understand how freaked out we’ve been. More on this in days and weeks to come.

So, basically the holidays are over. The care is becoming more attentive. The tests are being processed so Alex can be treated properly and conclusively. We wait and hope that the steroid anti-rejection bolus doesn’t drop her immune system too low so that it cannot fight the infection. AND we keenly wait the day that we can get Alex back home and healing in her own surroundings. It’s going to be tough on her, in that she has lost some ground. But the doctors are confident that after she gets through this she can get back on track and make up for lost (or rather, down) time.

At this point we are hoping to get her out of there sometime next week (fingers crossed!).  If anything changes I promise to let you all know what’s up. Again, sorry that I’ve not been more on the ball with my writing. I’m gonna try to be a bit more attentive that way. And hey, this by no means is a resolution, eh. Just so you know.

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