Today was a good day. Evelyn woke up smiling, and though her fatigue and overall situation haven't changed, when she's happy its pretty much impossible to not feel more optimistic. We went down to Scottish Rite late this afternoon to see the ENT (kind of like a pre-op, though technically just an office visit). As it happens, there is an opening this Friday - so Evs will be admitted to the hospital tomorrow, likely early afternoon, for surgery Friday. Our surgeon did seem a little more optimistic about the length of the hospital stay, so we're hoping we really can keep it under 14 days.
This even earlier surgery resolves two things:
1. We've been nervous about Evelyn continuing to fatigue, and how her breathing might be affected if she needs her seizure rescue meds. Not so worried knowing we'll be in the hospital in less than 24 hours.
2. Get it over with already! Knowing that Evelyn needs a trach, and feeling good about that decision, we are collectively ready to move through the waiting, surgery and early recovery, and get on with Evs feeling better and us feeling comfortable with her new accessory. :)
All of this is a big deal, even for we seasoned parents of a medically fragile child, but life really is good. There is a plan in place, the timing feels right (and safe) to us, and we can easily tell both of our children that they will, throughout these next few weeks, ALWAYS be with people who love them very much and whom they know very well. That requires a huge thank-you in advance to our extended family and close friends here in town - you guys are awesome. I am also, believe it or not, so very grateful that this is not our first hospital stay. We know so many little things that will make this easier for Evelyn and for us; from the library to the Child Life resources to the fact that the only drinkable coffee is at the coffee shop. :) With a longer stay lined up, just knowing how it all works will make things so very much easier.
With respect to visitors, I think mid-week next week will be a good starting point for visitors. Evelyn will be sedated for 3-4 days post surgery so that the site can heal without interference (from wiggly little girls, etc) so she won't know you came by until she is more awake, probably around Tuesday-ish. I will keep writing a daily update, and on Friday I will post when she goes back for surgery, and as soon as we know she's finished and doing well.
I am hoping to find someone to spend a good chunk of time with Evelyn one day next week, and one day the week after so that while Daniel is at work I can spend some time with Owen during the day. If you know Evelyn well (used to talking with her and reading books, movies and such) and are free during a weekday from roughly 8-12 or 1-5ish please let me know. 'CC' (Daniel's mom) and Owen have a wonderful repor, so he is really going to enjoy being with her, but I know that he senses that things are different, so Daniel and I want to be sure to give him some quality time (in addition to dinner/bedtime - one of us will be with him for that every night).
Love,
Kim
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3 comments:
Sign me up for reading with Evelyn!
Martha
I can do Tues 8-12
Hi Foresters! I was hoping to see you this weekend in Greenville or Atlanta, but it doesn't look like that's going to work out for us. Our thoughts are with the whole family- Unfortunately there's probably not much we can help with from LA, but please let me know if there is! As always, you're all in our thoughts and prayers!! Love, Nikki
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