At a Loss

As I mentioned, we had a meeting with the doctors today...more on that in a moment.

In the last five months of posting to this blog, I've gotten a lot of praise for my writing abilities, my knowledge of medical jargon, etc. Now I find that I'm at a loss for words. I was standing at Andrew's bedside today, looking into his beautiful eyes, holding his hand, and stroking his face. He looked back at me, his eyes brimming with personality and life, he grasped my finger, and he calmed at my touch. I thought about how to express that moment here, and I found I couldn't do it justice. Nothing I can write, nothing anyone can write, can begin to describe the depth of love that I feel for my son. He's sick, but he's perfect. He's balding, puffy, and covered in wires and tubes, but it all disappears so quickly when he looks into my eyes. I treasure every moment like this. I would do anything for him, and I can and will make every decision with only his best interest in mind.

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We talked with the doctors today, and if you hadn't guessed already, it wasn't a happy conversation. While Andrew makes continued improvement on a day-to-day basis, at least this week, his long-term prognosis is not as positive. The doctors have very little confidence in his ability to sustain himself long-term after extubation. If he failed the next extubation they would likely suggest a tracheostomy, which would insert a tube into his airway through a hole in his neck. This is generally considered a more long-term ventilation solution, and would likely require an additional hospital stay of one to two years. After that, he might be able to come home on a ventilator, but there would be no guarantee of him ever speaking or breathing on his own.

Unfortunately, the doctors estimate only a 5% chance of successful extubation. Though that number sounds surprisingly low, his medical history suggests that it's probably pretty accurate. He has to overcome a compressed bronchus, chronic lung disease, weak accessory muscles, and a tendency to clamp down and stop breathing when he gets upset. It's very difficult to stabilize him without a guaranteed airway; in the weeks that it would take him to wean to less support, he's bound to need some stabilization.

Even a successful extubation would be a long, hard road. It would start with continued weaning on his ventilator, then a significant amount of sprinting, and then an attempted tube removal. Just to get to that point would require at least a month. He would then start on something called BiPap, then wean to CPAP (which he was on last time), then move to high-flow nasal cannulae. Eventually, after a period of months, he may get to low-flow nasal cannulae, which would allow him to come home with a tank of oxygen. Even this best-case scenario would include its own difficulties and drawbacks. For instance, having never had any positive experiences involving his mouth, he wouldn't be able to eat by mouth and would require tube feeding for years. Even years later, he may not have the lung reserves to ever eat by mouth...simply the stress of chewing and swallowing while trying to breathe could kill him.

The more pressing long-term issue is the risk of developmental challenges. The doctors suggest a 95% chance of developmental issues; however, no one can predict the severity (or full range) of shortcomings. The four things they worry about are vision, hearing, cerebral palsy (muscular), and mental defecits. Even things that appear to be working now (his sight, for example), could deteriorate over time. At the serious end of the spectrum, he could be severely mentally handicapped, he could need hearing aids or be completely deaf, and/or he could require a wheelchair/crutches/braces/etc for life.

I don't want to keep piling on all of the awful possibilities. Suffice it to say that between the small chance of successful extubation and large change of awful developmental issues, we have about a 1% chance of having a normal five year old. This leaves us with some very difficult decisions. We will talk to the doctors again on Monday, at which point we will likely decide whether to continue forward toward another extubation. As we've all seen, complications have become the rule rather than the exception, and putting him through at least another month of trials with very little chance of success may be more than we want to impose on him.

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I know it's insensitive to put all this on a blog post...it's like breaking up with someone via email. I'm sorry. I know this will ruin some weekends/weeks/months. I'm sorry. I know some people won't get this until Monday, and will feel left out. I'm sorry. I know some people will disagree with whatever decision we make. I'm sorry. I would call everyone we know to discuss this personally if I could, but it's not logistically feasible, nor am I emotionally capable of verbalizing this at the moment. If you're still reading this blog after five months, it's because you truly care about Andrew and about us, and hopefully will understand. All I can do is lay it all out there.

Rest assured that we will do what we think is best for Andrew; this is not a decision we take lightly. We also have the utmost respect for every doctor and nurse at Children's Hospital, and owe them all the quality time that we have had with him. Without them, I would never have seen my son's personality shine through, and I appreciate that they have given me that opportunity. Obviously this weekend will be an emotional one for us, and I don't know how much I'll be posting. No final decisions have been made, and nothing irreversible will be done before Monday. We won't make our final decision until we talk to the doctors again and discuss the situation further, but please be prepared for any outcome.

D and I are giving each other the strength and comfort we need at this time. We thank you in advance for your understanding and support....we welcome emails, but aren't ready to talk about this yet. Please refrain from sending flowers/gifts; we very much appreciate the sentiment, but they can be an overwhelming reminder of an emotional situation.