Surgery is Scheduled

Today has been a pretty up and down - for us and for Evelyn. She woke up this morning with a big smile and looking better than I've seen her in a few days. She wanted to get in her wheelchair, roll around the house and read some stories. So she did. :) After about twenty minutes, the telltale yucky breathing pattern returned, and though she hung in there for a while, ultimately it was time for the next breathing treatment. Following her treatment she chose to go back on her bi-pap, which is a pretty clear indicator of how tired she is. She was largely on the bi-pap for the rest of the day. She continues to be tired but stable, and of course, very adorable.

I think I was on the phone literally all day long, and have yet to finish all the phone calls I need to make, but it was all productive. Most importantly was the discussion with Evelyn's pulmonologist, who was in full agreement with my assessment and feeling of urgency regarding the need for a trach placement ASAP. He spoke with the ENT (who will actually do the surgery) and they both feel that other than a bronchoscopy (sp) during the surgery they will not do any of the typical preliminary tests done prior to getting a trach. This is simply because Evelyn's issues are 'classic' and it really is a no-brainer that this is the right decision.

Our surgery is scheduled for Tuesday, March 13th and 12:30pm EST at Children's Healthcare of Atlanta at Scottish Rite. Evelyn will be admitted to the PICU on Monday, March 12th and will return to PICU post-surgery. After a few days she will move to the TICU which is a good bit cozier, but has the same level of care as the other ICUs. At a minimum, we can expect a two week stay, primarily due to training and equipment adjustments. They think 4 weeks would be a maximum length of stay, so I'm estimating 3 weeks and hoping we go home in just under 2.

Tomorrow (Wednesday) we have an appointment with the ENT to do all the pre-surgery stuff and give him an opportunity to really observe/examine Evelyn while she's not anesthetized. To be honest, I think there is a decent chance that after seeing her tomorrow he's going to want her admitted right away. While she is stable, she doesn't look great to me, and I'm not opposed to going in tomorrow (though I really hope if we're admitted early, the surgery will be done this week ).

It has been over two years since Evelyn has had a major health change, a lengthy hospital stay, or has been this 'sick'. It has also all happened really quickly, over the last three weeks. For these reasons, it has definitely been a stressful time for us - but we're doing well, and we continue to appreciate everything we have to be thankful for. Including all of you.

We've been inundated with offers of prayers, kind words, meals, etc - and thank you! I am just not going to be able to respond to everyone individually right now, but please know that we appreciate your support, especially your prayers. We know that even in the midst of all of this, we are so lucky - we have love, family, faith, a secure home, and so much support. If you want to visit, or need to connect with us in person please call or send me a text message. I will try to respond to emails, but some are going to get lost in the shuffle.

Thanks again!

PS: Owen is in his crib (should've been asleep 30 mins ago) clapping. Earlier today he announced he was going to tickle Pooh - and he proceeded to tickle his stuffed animal relentlessly. such a mess. :)