Monday, March 30, 2009
So much for being at home...
Saturday, March 28, 2009
I've pretty much not left the bed or the couch since Thursday evening when we came home. Brad's insisting that I not lift a finger and save my energy. He's an incredible support. I know this must eat at him too. In fact, he was visibly upset on the drive to the ER. I just wanted to hug him and say "it's okay" but the truth is, in those moments it's not okay. It's scary as heck not being able to breathe. Even scarier when it hurts to breath and move at the same time.
I better go get some rest.
Sunday, March 22, 2009
Lauren's Home (a report from Brad)
for so long (nearly six weeks of constant IV therapy), and they're
frustrated as well, so they've just decided to let her come home and
rest with no more IVs. If she's still doing poorly after a few weeks
at home they might admit her again, but at least she's out of the
hospital for a bit.
She also did her home lung-function tester (less accurate than the big
hospital equipment, of course, but still useful) after she got home,
and it appears that she's gotten better since the last hospital test
on Friday. So, as confusing as this disease is, it looks like she's on
the way back up. Today's measurement shows her about halfway between
Friday's results and where we'd like her to be.
Thanks for all your prayers!
With thanks to God and hope for His continued mercy,
Saturday, March 21, 2009
Today my CF doc finally came to see me. He's a bit baffled by this whole thing too. He's going to discontinue some of the IVs. We're slowing tapering the prednisone. No matter what we do though, I'm just not getting better fast enough for my taste.
This stay has been hard. It's really eating at us and making us feel quite drained. We covet your prayers for healing and peace of mind. All I really want to do at this point is go home. I've been on IVs constantly since February 9th and my body has decided it's done responding. I hate this. We hate this. We hate it a lot.
Saturday, March 14, 2009
Friday, March 13, 2009
Rhymes with Spit
All wasn't well. I had my PFTs and my FEV1 was lower than when I came in. A lot lower. I'm bitterly disappointed and can't understand what happened. I hope that things turn around quickly quite soon. I have a feeling this is going to be a lengthy stay here at the hospital.
Spit. Spit on a stick.
To be continued...
Thursday, March 12, 2009
Another Little Ditty
"I can do anything!"
I really seem to puff up
and my tummy gets real big
like a great big rubber ball
But I know that these drugs help me
and I'll breathe so much better
so that I can go to Boston in the Fall.
Tuesday, March 10, 2009
Been In for a Week
I ended up here a week ago. I had extreme shortness of breath and my oxygen saturation was pretty low. I ended up having to call an ambulance for myself. Joy. Ambulance rides are not fun. You have to balance on this crazy, skinny gurney and watch the world go by through the back window of claustrophibia-inducing vehicle. Yuck.
When we got to the hospital they started me on IV antibiotics--the usual stuff. Actually, this time they hit me with everything they've got it seems. I'm on 4 different antibiotics. 3 of the intravenous and one of them oral. The bugs that I'm growing this time are highly resistant to them, so we're hoping and praying that this heavy-duty combination of drugs will do the trick to wipe out the infection. The official diagnosis is double pneumonia. Gunky on both sides. I feel like I'm breathing through a coffee stirrer and the stuff I'm coughing up is about the consistency of watery mud. It may as well be mud for all I care.
I'm pretty low on energy, but improving a bit at a time. I'm still on oxygen, but my lung function tests from today showed an improvement from Friday. That's good news at least. I'm not sure how long I'll be here, but I'll try to get better at updating. I just haven't had a chance before now.
Over and out,