Setbacks

An exciting day for Nanette. She came off the respirator at about 1:30 this afternoon. In order to "extubate," she had to come off morphine. It was great to hear her voice. She's a strong girl with a lot of spunk, but she still carries a lot of pain from her surgery. The tube that helps remove excess air from her left chest cavity hurts too. She cried enough to get a tummy full of gas. All that pain set her back. Her heart rate jumped up to 200bpm and her respiratory rate topped 100. The respiratory therapist on duty switched her to a machine called CPAP - continuous positive airway pressure - the same machine used to treat sleep apnea. It blows oxygen in through the nose in order to keep the air passages open and clear, and the lungs full. With that and a dose of morphine, Nanette finally settled into a manageable state of agitation.

Gramma and Grampa Cooke brought the kids down this afternoon while all this was going on, so I spend the evening with Katie and Carter. JoAnn put them to bed while I walked up to see Nanette. I settled in next to her for a while, singing and holding her. The CPAP annoys her, but she's already learned how to cheat on it. She opens her lips just enough to let the extra air slip by. The nurse knows she's cheating, but as long as her SATS look good and her blood gas tests come back positive, they're cutting her some slack. She's a smart girl. Cunning at least.

Every once in a while she closes her mouth and the air pressure sets her off again. Singing seems to help. JoAnn sings "Hush little baby, don't say a word, Momma's gonna buy you a mocking bird..." JoAnn knows all the words and they're magical even though they don't all make sense to us adults. I get it all jumbled up, so I tried on of Katie's favorites.

Hush a bye
don't you cry
go to sleep my little baby.
When you wake
you will see
all the pretty little ponies.

Oaks and bays
Dapples and grays
Coach and six
of little ponies.

Nanette's heart rate came down on that one. Carter's song was always Alicia Keyes singing "I keep on falling, in and out, of love, with you..." Nanette just kind of shrugged that one off, so I stuck with Ponies. I sang soft and low, with my head down close to hers. Her breath tickled my eyes and she squeezed my hand. She doesn't smell like baby. More like astringent. She's got a new tube down into her stomach to remove bile, but her catheter is gone so she's wetting diapers again. Poor little girl. All she's every know is tubes and wires, tubes and wires. Tubes up her nose, tubes in her side, tubes in her arms, tubes in her mouth. Two wires on her chest monitor her heart and her breathing and there's a gold, heart-shaped electrode on her right side just above her hip that she likes to pick at with her little fingers.

We're hoping for improvement tomorrow. If her blood gases take a downturn, she'll have to go back on the respirator. That's bad because the tubes irritate her throat, and every day riding the vent increases the chance of infection or other complications.

Two steps forward, one step back.

Still better than the alternative.

That's all I have time for tonight. JoAnn is waiting for me to relieve her so that she can go up and join Nanette and Angie.