What a Glorious Day

Bailey is a warrior. Dr. T talked to me yesterday about not knowing how today will go; not knowing until he opens her up what he'll find; don't know if this will work but it's a good shot . . . I have received that identical message before every single surgery that she's had her entire life from either Dr. T or Dr. Brown. It feels like a hard kick in the belly, but it's not anything I didn't already know. Bailey has been on the leading edge for 15 1/2 years. She constantly treads new ground.

Bailey didn't sleep much last night. She woke up at 11:00pm and wanted to hurry up and eat something since she had to stop drinking and eating at midnight. Then she was awake most of the rest of the night. She was so scared this morning, but not panicky or out of control. She was so happy to see Jill, one of her very own personal surgery nurses, and Jill promised her that she would be right by her side the entire way. That gave her the greatest comfort. Sweet little Rissy was quite upset to see Bailey so scared this morning. It was hard for Josie to see Bailey so scared too. We gave each other a great big hug, and that helped get us through the rest of the day.

It was SO GOOD to see Dr. T's expression when he came up to talk to us after surgery today. He was pleased. I'm so happy when he's pleased because so much of me relies on him and Dr. D. Dr. T said that everything went very well, all her pressure numbers were good (not perfect, but good), and he is hopeful that this will hold her "for a while". I'm hopeful that "for a while" means decades. He also wanted to do a lung biopsy to see if her pulmonary hypertension had become a primary issue as opposed to a secondary issue, which it's been since birth. If it has somewhere along the line become a primary issue, that means that a transplant that she might need in the future would likely be a heart and a lung. He didn't get the biopsy done because he didn't want to put her through undue stress, but what he saw in the pressure numbers made him feel pretty confident that she would likely only need a heart . . . if it comes to that.

We were able to see Bailey in ICU at 6:00pm. We walked in her room, and she was already awake (falling in and out of sleep) and still had the tube down her throat (the ventilator). She started pulling on the tube and we said, "No, Bailey, Sweetie, you can't pull on that." Scott said, "T put that in there, Bailey." She looked up at him and formed the shape of an "L" with her index finger and thumb. Ha!! The entire room busted out laughing. I told Dr. T that this was going in the blog! He was quite amused. After checking her out and draining the Foley cath like he likes to do, he turned to walk out. Bailey pointed at him. I said, "Do you want T?" She shook her head yes, so I called out for him. He came back to Bailey's bed, and she mouthed as best she could, "Thank you." I don't know if he kept his composure (he quickly turned and left the room after patting her leg and telling her "you're welcome"), but I know I was seriously struggling and my heart was swelling up with pride. She loves him so much for his talent, for his orneriness, and for his compassion.

She wanted to know about her weight. She heard someone say "47", as in 47 kg, and Scott said, "No, Bails, that's not your weight anymore." I said, "Sweetie, T got about 15 pounds off of you today." She put her hand up to her forehead and started to cry. She hasn't had a pair of jeans on in months. I can't wait for her to wake up and check herself out! I do see her ribs!

Then, she pointed to somewhere in the direction of the foot of her bed and put her hand in a fist and pumped her thumb up and down. Nancy and I looked at each other and couldn't figure out what she was trying to say. About 1/2 later, it just hit me: "Bailey, were you asking about Survivor and Grey's Anatomy?" She shook her head yes! Ha!! We were saying yesterday that she would likely miss our 2 favorite shows and I would have to watch them by myself. She was happy to hear Survivor started in about 1/2 hour. (Although she's been sleeping through them so far.)

They took her off the ventilator at 8:30 tonight, and she's been sleeping like a baby ever since. Her numbers on the monitor are great: heart rate 85, O2 sats 97, art line pressure 88/47, CVP 10, and respiratory rate 15. And her blood gases are great. And God is great.

I'm so happy. All the family is gone for the night and it's just me and Bailey in our room in ICU. The nurse isn't even in here at the moment. And, I don't feel lonely tonight. It was wonderful to be with my family and friends today -- it felt like the Thanksgiving gathering that Bailey and I will likely miss next week. (But we've been promised that plates full of food will be delivered to us. Yum!) And I knew in my heart that all you guys were right there with us too. I can't even begin to properly convey the amount of encouragement and love that you have showered us with in these tough, tough times. I, personally, am forever grateful to each one of you. God is definitely carrying me through all this and you guys are crowded in on each side of us cheering me on. You guys are all wonderful!!

I pray that we have a night as incredible as our day has been, and a day tomorrow full of light, laughter, and hope.

Thank you for hanging in there with us,
Angie