Thursday, May 28, 2009

Bird book, home health care, and update

Liam is just now becoming old enough to look at books with paper pages instead of board books and be trusted to (mostly) not tear them. This is one of his current favorites and I really recommend it, the pictures are beautiful and it seems like all little kids are fascinated by birds.

In the picture you can also see Will's home IV medications (one hoked to the picc line and the other waiting by the computer). I didn't know Will before his transplant, but he tells me that home IVs are much easier now than they used to be as far as the equipment and all goes. No gravity drip. No mixing. Just hook it up to the line and away you go. You can also see Will's compressor for hypertonic saline treatment and other nebulized medications and the home sprirometry checker (on the bottom shelf).

Will's PFTs checked at the hospital were the same as what he has been measuring at home. Significantly down from what they were before this most recent illness. After 3 weeks on home IVs and nebulized Colistin, I know he is relieved for a break, and he feels okay because the IVs always really clear up his chronic sinus problems, but we're all pretty worried about his lung functions not bouncing back. He was at only about 55-60% lung function before this, so, there's really only so much room to maneuver. He will see the docs on June 8, so until then we just go on and hope things get better. If not, we can talk about whether there are any further treatment options to try to improve things, and, of course, what we might be able to do to prevent (or at least slow) any further decline.


Deron Arnold said...

I concur that IVs are so much easier than in the past. I would be up at 3:00 am trying to get that gravity bag to drip...and then I had class later that day.

Hope Will starts feeling better.

Say, does he find that all the nebs hurt his computer? My nebs glog up my DVD player so that it will no longer work.

IVF 40+ said...

Liam looks so cute!

mekate said...

Hi there Elizabeth-- I love the pictures of Will and Liam reading-- and am glad he is able to be home. I hope the appointment next week helps Will move back in a direction of improvement rather than maintenance. It must be scary-- well, I bet it is scary on some level most days-and your resilience is amazing, both of you. I am not sure how to say this, but through your blog and the peek it gives me into your life, you offer a beautiful demonstration of living well in spite of / along with what is. I am sure there are many other moments we don't see here, of paralysis or grief or frustration or fury- and I get that. But on the whole, in the day to day living, you seem to have chosen a positive path, toward living fully, which is wonderfully inspirational. Not sure that came out right, and I could be way off base, but I hope you get what i mean.

Wishing you well these next few weeks- and wishing you peace and a garden full of sprouts.

warmly, Kate