You Never Know What You Never Know....

Since the end of August, I've been walking around with such an psychologically enormous weight on my conscience. They wanted us to consent to giving Little Bird dexamethasone in an attempt to permanently extubate her from the ventilator. After looking into this drug, something didn't feel right to me. I couldn't say yes. Even though they were telling me that without it, she would surely need a tracheotomy and end up coming home on the machine. Even though I knew she had developed BPD, her lungs becoming more damaged with each passing day. When I researched the pros and cons for myself, it was the long term affects that scared me. One article in particular, albeit outdated, stated that there was enough evidence to show that the medication causes the brain tissue to shrink. I've said it a thousand times, Little Bird's quality of life must also be considered.


I don't think an hour has gone by, between then and now, that I haven't spent second guessing that choice. Especially over the course of the past two weeks. It absolutely killed me to know that a surgeon would hold her life in his hands during an operation that I might have been able to prevent. I asked everyone I knew what they would do in this position. Parents of preemies. Relatives. Friends. Medical professionals. The mail man. All anyone could say was "Do what you feel is best for your baby". But I still wasn't a hundred percent at ease that I did. I came very, very close to changing my mind, but still, I just couldn't. I don't know why.


And then, a few days ago, God (perhaps?) told me, directly, that I did right by her. Well, God, and MSNBC news. I logged on to the internet to find out what was happening in the rest of the world, when I came across this headline: http://www.msnbc.msn.com/id/44963638/ns/health-childrens_health/#.Tp9KjXKWRkg  I still don't understand what it was that made me refuse that treatment. Maybe the voices in my head aren't as crazy as they sound sometimes. I know this is far from over, and I know I don't get the final say. But now I also know, beyond the shadow of any doubt, that I made the right decision for Little Bird.


One of the most difficult aspects of this experience has been those proverbial forks in the road in regards to her medical care. What would she want? What if we lead her down the wrong path? There is no turning back. Today, we were faced with another one. The good news is that for the second time in as many weeks, the words "coming home" were mentioned, making the idea of it that much more real. But, the bad news is that she may have to undergo another procedure before she does. Over the weekend, we discussed the fact that she will not be bottle fed for quite some time because of the trach, and will be discharged with a feeding tube. The issue lies with what type of tube it will be. Right now, she requires a nasogastric piece, which she's had no problems with. However, one of the doctors on staff feels that a PEG might be in order because ventilated babies tend to lose weight. So far, she's been continuously gaining. But the concern is also that as of today, she's been switched from a high calorie formula to that of lower amount, and they anticipate that she might lose something because of this. 

I know a few people who's babies currently utilize this type of therapy, and are doing pretty well with it. But the thought of another surgery on her, for any reason, doesn't sit well with me. Considering how premature she was, and all of the obstacles she's already stared down? With the exception of the tracheotomy, we've managed to avoid the operating room throughout a situation that just about guaranteed we wouldn't. Maybe time will be kind to her once again, and give her a chance to prove western medicine wrong. Shall it be door number one? Or door number two?

In the meantime, we may have come up with an idea that could cut a few weeks off of her hospital stay. We've also been speaking with the staff about Little Bird's upcoming step-down transfer to a closer facility, which will be the previous unit she was in. It occurred to me that we have a relative who is a respiratory technician. He works with the only company in our area that offers home based care for mechanically dependent patients, and he lives ten minutes away from us. We don't know if this will even be possible, but we're hoping that we can arrange to complete the vent training with them (more specifically him) if the hospital will allow for it. It certainly can't hurt to ask.

Either way, we're getting closer to that day when she might finally be released. Number Five overheard MFH and I talking about it this afternoon, and she is soooo excited. She has big plans for her little sister. Plans that include sharing her Halloween candy, teaching her how to jump up and down on her bed, and a very colorful bubble bath. The rest of us have a lot of work to do before that day comes. Our family is about to undergo an entire lifestyle change. We will be prepared. We can do this. 

 

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