Maintenance

It takes a lot of daily care and attention to maintain a lung transplant. Of course there is the daily medication to prevent rejection, I'll post about that some time in the future. And the daily efforts to keep clean and prevent infection, so important when your immune system is suppressed. And, now, for Will, daily airway clearance.

Transplanted lungs are vulnerable, so if you get sick a few times as Will did (first with post-transplant lymphoproliferative disorder (a kind of cancer) then with chronic rejection, then pneumonia, then Hodgkin's lymphoma, then pneumonia again) you end up with lung damage. Among other things, the lung damage means that the lungs get infected more easily and the infections are more difficult to fully get rid of.

"Airway clearance" as far as I understand it means loosening up the gunk in ones lungs and aggressively coughing it up to get rid of it. Will doesn't like adding daily airway clearance to his routine. It takes time -- about 90 minutes or so each day -- and it makes his chest hurt. Mostly, though, I think the hard part is that it was one of the CF related obligations he had hoped to leave behind forever after transplant. But he does do it, most days, because it makes him feel better and hopefully will make hospitalizations and use of IV antibiotics less frequent. Will recently started using nebulized hyper tonic saline (a 3% solution) to help with airway clearance and it does seem to help him. It seems like inhaling the saline mist makes the gunk in his lungs more susceptible to moving around and being coughed up.

For those who haven't seen it before, the maintenance gear is, from left to right: basket of nebulizer mouth-pieces ready to be taken apart and sterilized; the compressor, which blasts air into the saline to turn it into a mist (propped up for photo purposes on an albuterol inhaler which you can barely see); box of colistimine ready to be mixed up, sometimes Will takes antibiotics by inhalation; two little ampules of the saline solution, ready to go; and the home PFT tester used to measure whether lung function is staying the same, getting better, or getting worse. (More on that some other time.)

We're grateful beyond words that these treatments exist, and that Will persists in them with (mostly!) good humor and grace.

Very Hot Day and Liam Meets a Fish

Yesterday was hot (low 90s, which is extreme for here) so we took Liam to a beach/nature center on the shore of Puget Sound where the water is wide and we hoped it would be cooler. (Our local bit of Sound is not too wide and doesn't help too much on truly hot days.) The nature center had some fish tanks set up as tide pools where Liam could touch the water and whatever else he could reach that wasn't going to bit him. (A shiner perch fish nibbled his finger, which was a big hit.) Then out to a cobble beach to toss rocks into the Sound and taste the salt water. Finally home to play on the porch, eat strawberries and climb the rhododendron tree with Daddy. A great day. Today will be even hotter; Mommy is going to work in air conditioned comfort at her office. Liam and Daddy will go to grandma K and grandpa DM to watch boats and hopefully enjoy a cool breeze from the water.

First Post

Then...

This was one year ago today almost exactly. I love that Will, who has spent so much time as a hospital patient, is a visitor in this photo. I hope to be able to use this blog to keep friends and family updated on our days and Liam's progress. More soon.