Monday, March 5, 2012

Weary but Working

So that's Rocky, our old, indulgent pound puppy. He's got a little bit of doggy dementia, and his joints are getting creaky, so I guess he's earned a little chair-sitting.

That's how Evelyn and I are feeling today. Tired. Evelyn uses a bi-pap machine at night (google it if needed) to give her nice deep breaths and a restful sleep. Well, she was so lethargic today that we and her pulmonologist felt it'd be best to keep her on it for the majority of the day. So we did. And she appreciated that; though her numbers (meaning oxygen saturation and heart rate) have been consistently good, she just looks worn out. She looks like she's working harder to breathe when she's not on her bi-pap, and I just don't have a great feeling about her sustaining this level of lethargy for much longer. So, first thing this morning I called pulmonology and the ENT to push for an earlier follow up and to get the ball rolling with the trach discussion. Pulmo was very helpful, but unfortunately nothing much happened all afternoon. As I realized we weren't getting the much desired call to schedule an ENT appointment (and they're the ones that lead the way where trachs are concerned) I called them, again, and left a message, again. No response. So, as soon as we got past business hours, I decided to be sneaky and call the on-call pulmonologist to get advice on what more, if anything, we could do for Evelyn. My hope was that whoever was on call would be nice and I'd get the whole story out, and get some action on our behalf.

Well, the doc was awesome. Confirmed that I'm not overreacting with regard to my concern for Evelyn's current health - basically she doesn't have much reserve left, so we DO need to act fast. He said he'd talk with our pulmo first thing in the morning - but 30 minutes later he called back and had already spoken with him. SO, our pulmo will be speaking personally to our ENT (who to this point probably doesn't have a clue about everything that's happening) in the morning, and we will likely have a direct admit to the hospital to place a trach. I expect we'll go in to the hospital this week, possibly as early as tomorrow.

Don't get me wrong, I'm not excited about this. The surgery is, well, surgery, and the recovery stay is a minimum of a week. It is going to be tough - Owen will be with his CC (grandma) who he adores, Daniel will be working days and at the hospital most nights, and I'll split between the hospital with Evs during the day and Owen at night. I'm glad things like this don't happen too often, because it isn't fun. The truth is though, that I'd go through it all twice, and Evelyn would too, if it meant she'd get some relief and energy. And she will, as long as things go smoothly.

I've been a little disappointed these last few days by the lack of perspective or compassion shown by a few people we know, but that's inevitable. We feel so much love, and know so many prayers are being said; and that makes all the difference. It can be lonely and isolating in the hospital, where time stops - yet the world keeps moving - but I am so thankful for all of you - even when it's just a 'like' on facebook - because it means Evelyn was thought of, once again, with love - often by someone she's never met. Some people criticize the digital age because they fear it limits face-to-face contact, and I don't disagree. But when face-to-face isn't practical, or even feasible, it gives us another community of people to walk through life with. Thanks for walking with us.


Ivey said...

Please note that Madison & I are walking with you it's a wednesday at work or a sunday at church, you are forever in our hearts! Our lives have crossed for the past 2 years and you guys have been nothing more than a BLESSING to us! With Evs bright smile and her very own sense of humor I enjoy every minute spent with her :) From hearing Owen call my name to our weekly sessions (lol) I couldn't be more THANKFUL
. Praying for quick actions and a speedy recovery, see ya wednesday! IVEY

Mary Mom to Julianna said...

Kim, Daniel and Evs, You were there for us during our intense time one year ago. Please know that you all are in our thoughts and prayers. I support your family in making all of the heart wrenching decisions that come with the very special blessing of our girls.
Kim, you have my cell, I have a shoulder and I am here, even just to listen. Please send me the address of what hospital Evs will be at.
The both of you are incredible parents, warm, loving and brilliant. You have been Evs warriors always. Be good to yourselves. Sending hugs and strength Mary Mom to Julianna