It's been 6 days and we're still in ICU. My daughter, A, suffered a complication of pneumothorax post-surgery (we were there to close her stoma from her old tracheostomy). In my last post, I had reported that her lungs didn't collapse. I was wrong. They did. I guess that is the definition of pneumothorax. But she is doing well, is stable, and is set to go to the operating room tomorrow for the doctors to take a peek down her airway; if all goes well, she will be extubated (that is, they will remove the breathing tube which has been down her throat and take her off the ventilator). Her chest tubes will be removed a day or two later. And then we can finally take our baby home.
She has been sedated this whole time, kept asleep so that she doesn't mess with the breathing tube. I miss her so much, even though I'm with her most of the day. I'm actually typing this in the hospital room, right next to her. But having my daughter sleeping next to me is a tease. I miss her voice, her bright eyes, her feisty personality. I miss reading to her, playing games, working on her pre-kindergarten workbook that we've been doing daily. I miss HER!
As hard it as it is to believe, this is our first hospitalization in almost 5 years; only her 3rd ever. Her first hospitalization was when she was a newborn. She spent almost 12 weeks in the NICU (neonatal intensive care unit) before we were finally able to bring her home. We finally brought her home, but after only 7 weeks she was back in the hospital, this time to re-do a previous surgery (a Nissen fundoplication that had come undone) and to do her tracheostomy. We were in the hospital for a total of 4 weeks exactly.
Both of these stays were almost 5 years ago, in 2006.
Back when we left the hospital in 2006, after getting her trachestomy, we were saying goodbye to the nurses when her charge nurse said to me, "oh, we'll see you again. Kids with trachs always come back...even if she gets a cold, you'll be back because it's hard." But you know what? She never went back. J and I made sure of that. When she got a cold (and trust me, over the 4 years that she had the trach she had many colds) it was hard. Having a cold with a tracheostomy means suctioning the mucus out several times an hour, 24 hours a day. We had no night nurse (and only had a day nurse to help out 3 days a week). When she had a cold, we got very little sleep for 3 nights in a row...we were up all night suctioning her and giving her breathing treatments and caring for her. But it was worth it. We did NOT want her hospitalized if we could help it.
And since then, there has been nothing. Well, we DID have two overnight stays since then, neither of which I count as a hospitalization. In 2007, at the age of 7 months old she was in overnight for one night when she had her cleft lip repaired. And last year she was overnight was one night when her doctor took her breathing tube out (he wanted to observe her overnight). I don't count either of these as a real hospitalization, though, since each was for only one night and she wasn't SICK...both were for observation, only.
This time, however, it's different. She's sick. A collapsed lung, and the results of her tissues filling with air could have been fatal. She is on a ventilator, with two chest tubes stuck in her, getting all the air out. Just yesterday she looks almost normal to me...it took a long time to get the air out. Her lungs are re-inflated. Her vital signs are good. She is going to be ok....yet we're here, because she's not ok yet.
Home is a hard place to be. I've been coming home each night to sleep; normally, I'd sleep here with her in the hospital, but since she's sedated and out-of-it and doesn't really know that I'm here in the first place, I've been opting to go home to get some much-needed rest that I can't get here in the hospital room. Once she wakes up, of course (tomorrow, hopefully) I'll be here all night.
But at home, her absence is strongly felt. When she was in the NICU, I desperately wanted her home, but she wasn't really MISSED at home, because she had never been there. Even when she was in the hospital for the month when she get her trachestomy, a few months later, I missed her, but she was still so new to us (we only had her home for 7 weeks) that she wasn't quite an essential part of the family routine yet (if that makes sense). But now? At age (almost) 5? She completes the family. It's hard eating dinner with just me, my husband J, and my son, D. I'm sad doing laundry and having none of her clothes to wash and fold. It's difficult walking by all her toys, dolls and games, which are just sitting there waiting for her to return and play with. I hate not having her sippy cups to put in the dishwasher, her books to put back in her bookshelf, her little body to snap into her carseat, her warm scent to inhale when I'm cuddling with her in the morning.
She'll be home soon enough. I'm glad she's getting the care she needs in a top-notch Children's Hospital. But man, it's hard. I miss my daughter so much.
july 4th weekend adventures and running
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