Wednesday, August 24

Whenever someone says to me, "I have good news and bad news, which do you want first?" I always pick the bad news, because then the good news washes it down like dessert. Here is the bad news. Yesterday, after a few days of a tube-free face, Audrey began to have troubles with her oxygen saturations again and wound up with a light-flow nasal cannula. That little bit of extra oxygen has kept her sats up, but her lungs were still looking and sounding a bit junky, so the doctors started doing some more detective work to find out why. Her acid reflux has been a bear. After they'd seen that she was spitting up all of her milk and aspirating, they scaled her back to just a slow drip of milk through her G tube, which she's been able to keep down. Today, they discovered another major source of the problem: one of her vocal chords is paralyzed. Apparently this happens with at least half of all major chest surgeries, a result of swelling or stretching around the nerve, and it often repairs itself with time. But not always. If it remains paralyzed, her other chord will eventually learn to compensate for it, although it would make her voice somewhat different sounding. When a person swallows, it is the action of the vocal chords closing that protects the airways from food and liquids. Audrey can't protect her airway in this manner, so no wonder swallowing is scary. Her funnel-like throat also catches liquids both coming up and going down, so she's always fighting that too. Until they reduced her feeds to a drip she frequently coughed and gagged when her stomach refluxed, and even now she still gets frightened because she can't breathe whenever stuff gets stuck in her throat. I have not tried feeding her by mouth since that first time, and now it looks like it will be a while more before we can really start. One thing that will help is a dilation--similar to an angioplasty, they will put a thin balloon down her throat and inflate it to stretch her esophagus repair site--and I have asked if we can do it as soon as possible, but was told it won't be until at least next week. Today we are dealing with the news that it will still be a while before we can bring her home, and the double blow that she is probably heading to another surgery. They are talking about giving her an NJ tube-- a surgically inserted feeding tube that goes in her nose, through her stomach passage and dumps milk directly into her small intestine. Although a jejeunal tube is available that can utilize her existing G tube to get to the same area, we are told that it is only available for bigger children so she would need to wait for that. So in essence here is my depressing realization: To have gone through all of these months with a nasal tube requiring tape on her face, and not able to feed her by mouth because we needed to protect her airways, with frequent suctions (all of which she hated,) waiting until she grew and then to FINALLY get to surgery, only to end up with a nasal tube (which means constant tape on the face), no oral feeds because we need to protect her airways, with frequent suctions because her saliva and milk get sort of stuck in the back of her mouth, and waiting until she is bigger before we can get that blasted tube out of her nose and off her face.... *sigh*. We are nowhere near as close to going home as I'd hoped. And the iPod is still missing... a fact that has somehow deeply agitated my sense of security and well-being, even to the point that I was having difficulty connecting with Audrey for a few days.

Here is the good news. (Imagine chocolate.) They continue to wean her painkillers, and with very few signs of withdrawals she has done fabulously well at this. Everyone in the unit is getting to know Audrey and loves to visit her. She is currently the only girl in our room of five beds, so her pinkness sort of stands out. She has a pretty steady stream of visits throughout the day from several of the nurses and staff who have grown to love her smiley, easygoing nature. She is known for engaging everyone and loves faces and being talked to. One nurse tells of a couple of mornings ago when she set her up in front of a little mirror hanging by a string. Audrey cooed and talked to the baby in the mirror, then reached out and batted at the mirror, then cooed and talked at that baby in the mirror again. I've been able to hold her any time I want to. Music therapy came yesterday and we sang a cute version of "I'm a Little Teapot." Audrey fell asleep toward the end of the song and I had thought the therapist would leave as she usually does when that happens, but instead she improvised gentle chords on her guitar and invited me to sing along however I felt, and just to think about what I'd want to sing to Audrey. I managed to follow along a bit and started to think about what I wanted to say to her, and suddenly I started to cry and could barely stop. I apologized but the therapist said that was just what she'd wanted, that letting go in that way would help me to be more patient with my children at home, etc. Then, today, Susan Cox came to find me. The kind director of the unit told me that she has been trying to connect with me for days, that she had done a careful investigation into what could have happened to the iPod. Although she thinks there was an honest accident that occurred some time around when the bed was changed out, she feels the hospital owes us a new iPod. I was really touched by her sincerity and compassion, and the whole experience healed something in me that is hard to express. I held Audrey for a little while and she snuggled into me, and then fussed when I had to leave to pump... and although that broke my heart, in a way it warmed it too. In spite of everything, I think she really does know me.