Thursday, March 10, 2005

Just Waiting

Dressing changes are going a little easier - the goopy stuff is clearing up a bit. The infectious disease doctor came in today and announced that we don't have to wear mask and gloves anymore! I was afraid to take mine off. I've lived in mask and gloves for over 5 weeks (you would be amazed at how fast I'm typing right now!). Then we (me, Bailey and her nurse Leslie) just let Scott and then Tom and then Nancy come in all "suited up" in mask and gloves and just looked at them to see if they noticed. It took Scott the longest to figure it out - in fact, he didn't figure it out - we had to tell him. It will be strange to sleep without a mask tonight. My bed is by the window and when it gets cold outside, the window gets cold. The mask helped keep me warm on many a night! I'm still using hand sanitizer like crazy and not smooching all over Bailey - although it's hard to keep from doing that. (Except for right now, though. She's mad at me because I made her do some homework tonight. Maybe she'll forgive me after a good night's sleep.)

Had a meeting today to learn more about the transplant process. Pretty amazing stuff. Also had a meeting to learn more about the financial end of this process - wow! That was eye-opening.

Bailey has built up some antibodies because of blood trasfusions she's been given in the past, so they're giving her IVIG to lower her antibodies to cut down on the rejection factor after transplant. Apparently it's quite common to get shaky or the hives or some other reactions, but Bailey did just fine with it. They'll give that to her for 4 days. Also, that should allow a wider range of donor matches - we learned today that they already turned down a heart over the weekend because the match wasn't good enough. That just kind of makes us realize that it really could be any time - only God knows. It's really incredible to watch this whole thing with Bailey's heart evolve and know that it's happening exactly as God has planned. Think about it too long and it gets pretty confusing. It's just comforting to know that God is in control of the situation, and we continue to be truly blessed.

Hope all is well with everyone out there! I know there are people reading this who we have never met, and just know that we thank you for your prayers too.

Hugs to everyone,



Blogger Annette said...

Good morning! I get up with the hens now and first thing is to log onto Bailey's Update!

I feel in my heart that the call will come soon about your new heart. Riley Hospital is just amazing and they are giving you 500%!!!! Just hang in there! You are one of the strongest and bravest people I've met - I know how strong kids can be after watching Matthew (my son) go through an illness and a long hospital stay - he just blew me away - and you're doing it too!!!!

I don't know if it's proper to do this - but I just want to say hi here to all of my R&L friends - hey guys - I miss you all terribly!!!!

Angie, you wear the mask at night if it keeps you warm - who'll know the difference? I have a big stuffed bear I can bring down to you - if you want you can sleep with it and hug it - maybe that'll help!

As soon as I can I'll come down again - just keep busy and the time will go fast!

Much love,
Annette :)

6:37 AM  
Blogger The Norris Family said...

Good Morning Bailey and Angie!

Just wanted you to know we have all been praying for both of you and the donor family. We know it must be hard to be in the hospital so.. long. We hope a new heart comes soon so you can enjoy the upcoming Spring weather (if it ever shows up!). Hope to see you again soon- have a great day

The Norris Family

PS. Franklin gets mad at me to when I make him do his homework. He'd rather be skateboarding, playing ball or anything besides homework!

7:19 AM  
Blogger Melissa Brown said...

Bailey, I was the lady who organized the baseball game for all the CHD kids at the Indians stadium 2 years ago. I am so proud of you for hanging in there and keeping up your spirits. I know your mom is so proud of you as well. Please know that so may people are praying for you and so many people love you. You are so blessed.
Love Melissa Brown, Mommy to angel Madelynn

7:37 PM  

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