Tuesday, March 13, 2012
Right after her birthday in 2007, Maggie was admitted to the hospital with pneumonia. Though she had pneumonia many times before (and since) then, I knew it was bad. She needed the highest possible levels of oxygen and was still gasping for air. Her trachea, which was never anatomically correct, was collapsing and she could not get the air she needed into her lungs. We already knew from tests done months earlier that her airway obstructed her breathing during sleep and they had discussed a trach already, but I was sure she wouldn't need it. My rationale: She had this airway problem since birth and she had always done OK. We know what we are doing. On most kids the airway problems resolve on their own. It didn't with Maggie and as she grew it was getting worse. Then the pneumonia hit, and her body just couldn't keep up with her increased oxygen needs. After about a week in the hospital we were told that she needed the trach to survive. No more rationalizing.
She was in the hospital a total of three weeks that go 'round. Two weeks before and a little over a wee after the surgery. We couldn't go home until it was safe to change the trach tube because they had to be certain we knew how. Of course it wasn't safe to even try to change it until the surgical site had several days to heal. When she finally got out of the hospital, we came home to a room filled with much more medical equipment and supplies. It was the most overwhelmed I felt since Maggie first came home from the NICU when she was three months old.
I've said many times that we have a love/hate relationship with her tracheostomy. The love part is easy: Without question that thing saved her life. I don't think she would have lasted the week, five years ago or today, without it. The hate part is more complicated.
Before Maggie had her trach, caring for her was time consuming and difficult, or so we thought. After the trach, her care needs went into the stratosphere. She has to have someone intervening to suction or do some other intervention every minute of so. The constant vigilance is exhausting.
The first year or so after the trach was placed we almost lost her a number of times. It seemed the trach caused as many problems as it solved. After a few 911 calls, multiple hospitalizations, changes in treatment plans and scary episodes, many of those resolved and we settled into our current state. There are still emergencies, in fact we had one on Saturday evening. The trach tube comes out and Maggie gets into distress fairly quickly. Though I have done it alone several times, it is really a two person job to get a new trach tube in and tied properly.
On a less dramatic front, the thing is scary looking and made my beautiful daughter into something of a freak. It was bad enough before the trach. The wheelchair, the communication device etc, but the trach tube is on her body and it creeps people out. Stupid, I know, but that's part of the "hate" side of the equation.
In the five years that she's had the tracheostomy, Maggie has thrived. She continues to have unbelievable medical needs, but she is far healthier today than she has been in many years. In those five years she completed middle school, started high school, attended two proms, has friends, discovered Beyonce and pop music, really took off using her dynavox to communicate and figured out how to order us around. She is living her life and that would not have been possible without the trach.
I think the love outweighs the hate.