Monday, December 03, 2007

The White Stuff

I woke up this morning to Bailey's sweet little voice: "Mom! It's almost 9:00." Aghh. For some reason, I seem to be wide awake at 1:00 in the morning and am lately having a hard time getting to sleep. So 9:00 came pretty early. As I sat up on my little bench here, my legs still in my sleeping bag since it's very cold over here by the window, I hear a little tap on the door and Dr. T pops his head around the curtain. He says, "Go back to bed!" I said, "Great! I have permission!" But that didn't last long. He then said, "Let's get those chest tubes out." Aghh. That was it. Such mixed feelings . . . at least on my part. On Bailey's part, she was just purely against it. She couldn't see past getting them out. She had herself convinced it was going to hurt and hurt very badly. We've talked about these tubes off and on for the past 2 weeks, and nothing anyone could say was helping her feel better about getting them out. So! Here we go. She starts crying and is strictly against getting them out. Even though she asked Dr. T long ago if he would be the one to take them out (usually one of his underlings is who takes them out) and he agreed, she was still strictly against it. She wanted to be "out" when he pulled them and he told her that it was too risky to take her to surgery to do it, but they did give her versed and morphine. And that still didn't do it. She kept asking for "the white stuff". The white stuff is what they gave her 2 years ago after the Berlin Heart came out, but they also did a few other things at the same time. Dr. T kept walking in and out of our room waiting for the versed to take effect. I was doing my best to console and and to try to get her to get control of herself, and she said, "Well, I didn't think they were going to do it in the morning!" Not sure what that had to do with anything. Maybe the versed talking? Finally, Dr. T walked back in and said, "Bailey, we're getting the white stuff for you." She was so upset that it really didn't register, plus the versed was making her loopy. We waited about 5 minutes for an anesthesiologist to come in and divvy up the white stuff. I held out my arm hoping to get some, but it didn't work! It was kind of scary, really. Dr. T told him to be careful because he didn't want her to stop breathing. They hooked her up to the monitors so they could keep a close eye on her breathing and BP. She was still awake and seemingly aware - still very upset - and he asked the anesthesiologist if he had given her all he was comfortable with and he said yes. Dr. T looked at me apologetically and said something like, "We really can't give her any more . . .". I was sitting at her feet rubbing her legs, and I just gave him a "wave" to go ahead and "git 'er done". That was all he needed. He tore off the dressing, pulled out both tubes together, and even pulled off all the steri strips that were on her incision - all in about 30 seconds. All of this while Bailey cried and cried, "No, don't touch it!" in a really whacked-out voice. Then, our nurse Amanda was helping with the new dressing and taped Dr. T's gloved hand down to Bailey's gauze. He said, "Well, Bailey, it looks like we're bonded together for a while." Ha! We all started laughing, and Amanda freed his gloves. Then, in a really small and whiny voice, we all hear, "I need some more white stuff!" Bailey had no idea that it was all over, even though we had already told her so. It felt kind of wrong laughing while she was so out of it, but we couldn't help it. I think we were just all giddy that it was over. It was quite stressful for everyone involved. She managed to tell them all "thank you" before they left our room and after she finally realized it was all over - her eyes still rolling around a bit.

Then Amanda and I were still talking about it later, thinking Bailey could laugh along with us, but she didn't even remember anything that happened. So we re-visited the fun morning and told Bailey all about it. She was able to laugh at the "I need some more white stuff!"

She's been taking more walks today. It's a lot easier for her to get around now that she doesn't have two giant "juice boxes" on tubes to carry around. And I can see the old Bailey coming around. There have been moments of the "h" word bouncing around today ("home"). Of course no one has committed to a day. The best we can do is "by the weekend" and "if everything continues to go well". Only time will tell.

Have a good night, everyone!



Anonymous Anonymous said...

Oh my gosh! I was thrilled and surprised that you had already posted. I always check, but you stay up a lot later than I do. I'm glad everything went well and everyone can laugh about it now. All of us out here in blog land are praying for the "h" words...healthy, happy, home. If I remember correctly, I got in trouble once for saying the other "h" word that you guys have seen way too much of lately. Haha. I'm sure the word brings much anxiety too, but you always deal with everything so well. One day at a God's time. :)

Love you much. I can sleep well tonight, and hope you do too.
Aunt Vickie

9:45 PM  
Anonymous Anonymous said...

What great news. It is so wonderful to hear that Bailey is feeling better, and that the juice boxes are out. We anxiously look forward to each evening's report. Our thoughts are always with you.

-Todd and Linda Maurer

9:56 PM  
Anonymous Anonymous said...

Allright! So very glad those chest tubes are out and you are one day closer to going home. I'm still praying that those fluids stay off and you guys are going home very, very soon. I'm still checking the blog every day and praying constantly for absolute healing. Both of you hang it there! -Nancy Hobbs

10:31 PM  
Anonymous Anonymous said...

Well, I am certainly glad that Bailey meant a medicine when she kept saying more white stuff. I thought she was talking about SNOW! The dreaded "s" word! It is coming tonight and somehow it just doesn't seem like the right time yet.

I can think of a lot of words to describe Bailey and you, but I think my favorite is grace. The power that you have to handle all of this with such grace can only come from the love and faith you have from God. In so many ways we are all peeking into a window and watching Him work through you. What a blessing!

Have a great day and hopefully we'll see you home soon!

I love you...Mary Ann

7:57 AM  
Anonymous Anonymous said...

Hello Ladies-

Oh, I hope you get to come home
in the next week. Ris & Josie
were so cute yesterday. They are growing like crazy! The best "Gift"
ever would be that Bailey comes
home. Hang in there!!!!

Peace for the Holidays!!
Much Love-
Dee, Mark,MaKayla,Matt & Mike

8:24 AM  
Blogger carmelapples said...

Morning Glories,

Wow! I'm so glad that's over with. I felt light-headed just reading the blog. Is that white stuff over the counter by chance? ha ha

They take such good care of you guys at Riley. I'm so grateful for all the people there. I know they are like family to you guys. I saw a Christmas ornament the other day in Hallmark that was a scrub top and stethoscope and medical stuff in the pockets...I wished at that moment I could've bought about 20 of them for all the great people who have dedicated themselves to your wonderful care.

We are praying that you get to come home soon, very soon.

Love you, Aunt Deb

8:31 AM  
Anonymous Anonymous said...

"Oh there's no place like Home for the Holidays!" No wonder you two were sleeping when I came by! Hopefully the only white stuff Baily will be needing is snow for Christmas.
Rest well.
Mike, Nancy, Angela & Andrea

8:51 AM  
Anonymous Anonymous said...

Angie & Bailey:

I can only imagine Bailey's attitude about getting the tubes out. I remember how adamant she was about no one touching the steristrips after her second surgery. It took forever for the last one to 'drop' off. I don't think water could even touch them. She has a very strong will and has no problem expressing it! I think that's one of the things that's helped her through this ordeal.

Still here thinking optimistic and happy thoughts that you will get home very soon, CAROL

11:10 AM  
Anonymous Anonymous said...


I know a girl in the Heart Center right now. I saw that you posted a comment on her CaringBridge site. It is wonderful of you to post support for others during this time! May God Bless you and your family!!!

2:53 PM  

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