A number of people have asked how we’re managing, so I thought I’d take a moment to post a little about our schedule and what it’s like to have two homes, one of them a hospital room.
At the moment Michelle is spending every night in the hospital, except those when Zoe is not allowed to eat (ie when she has a surgery scheduled) and I can therefore replace her. So long as she is nursing, she is tethered to the room pretty closely since Zoe is not willing to take a bottle or pacifier right now.
During the day she is in and out to try and spend time with Maya and stop by the office some days — yesterday they went on an Easter Egg Hunt. Maya has become quite the competitor since I took her last year, she came home with an overfull basket this time.
My parents have essentially put their lives on hold to move into our house and take care of Maya, and without that I honestly don’t know how we’d manage at all. We’re very lucky for that. Maya spends her time when not out with Mom or in the hospital play rooms visiting with them, and she’s having a pretty decent time of it. Being with grandparents is practically vacation anyway, so she’s getting by.
I tend to float between the hospital and home, filling in wherever I can. When Michelle is out, I’m with Zoe. When she is in the hospital in the evening I’m at home getting Maya through her bedtime rituals and night. It works pretty well, but it leaves little time for us all to be together. We had a picnic in the hospital room last night with all four of us, and it was the first time we’d managed to eat all together in weeks. We’re optimistic that if things continue to improve we’ll be out of the hospital until the BMT in a couple months, and things can return to normal right up until they are upended again.
The hospital staff has been very supportive, and we really don’t have anything but good things to say about them. We’ve met some truly standout people, including all of the doctors we’ve seen so far, so we couldn’t ask for better treatment. There are a lot of programs we’ve been informed about to help, everything from “bring in one bill” and they’ll pay it, to financial aid programs, to cafeteria meal cards to Wal-Mart and phone cards for getting gas or keeping in touch. They do a fine job of keeping the bases covered. I have a feeling we’re terribly lucky to be where we are with such great support from family and friends, a stellar hospital staff, and a really strong toddler who can handle being bounced around a bit and still be upbeat most of the time.
Side note: There was attempt by the spam filter to achieve sentience yesterday, suppressing all of the comments that came in for about 24 hours. My apologies for that, the rebellion has been put down and you may resume commenting. We love it and read it all, so thank you for that.
Boy what a hectic lifestyle, I don’t know how you guys are able to handle it but you are, hopefully for a fairly short time until Zoe gets to go home next week. Thank goodness for Sandra and Larry being able to be there for Maya and that she thinks she’s on vacation. We are fortunate to have the excellent care from the great Dr’s and Nurses. We here, are all with you and pray for her complete recovery every day. The journal helps to keep us updated on a daily basis. Thank you for taking the time to write it
Evan and Michelle,
You all are real troopers. I read yesterday’s post and tried several times to post to it and now I understand why the post would not go through.
It is amazing how the doctors and nurses are so helpful and thoughtful.
I know when I was being treated at Duke I could not have had better care and everyone was so helpful and thoughtful. They understand what each person is going through and they try to make it as pleasant as possible.
I am so glad to hear of Zoe’s progress. It seems as if things are going as well as they possibly can. I know it is hard on your family and you feel like you are on a merry go round and you do not know where you will land each and everyday.
I am so thankful that Larry and your mom can be there for you. When I was sick I worried so about Emily and David but there were so many people that were willing to help it made it a little easier to cope with.
Maya is getting so big and Zoe is so cute. Hang in there and know that we are praying for you and hopefully Zoe will be home soon!
It’s always a good sign when they are removing, not adding, lines, so three cheers for the resilient Zoe!! And her numbers posted in your other entry look great. Love, Mara