Monday, May 6, 2013

Just a little while longer

Everyone wants to know how long my son will live. That's what they mean when they say, "So what does this mean?". I want to know too. But I don't and I never will.

It's hard when you're first diagnosed with a "progressive and fatal genetic disease". You worry and wonder and savor every moment not knowing which one will be your last. And this beast is like a light switch; one minute everything is going fine and then out of the blue the switch flips and everything is not fine. In fact, nothing is fine. We're scheduled to go to the park for a t-ball game and instead we're at Children's Hospital getting a PICC line placed to receive IV antibiotics. Or we're running all over town to find a GI Specialist who can see him on short notice. His weight is up and his weight is down. He's never had an appetite. The cough that they treated as a pulmonary exacerbation for the first six months of his life turned out to be tracheomalacia, which was good in the sense that it wasn't a horrible infection causing the issues but rather a floppy windpipe. But it was not good in that he can't afford to have a floppy windpipe. He needs a strong windpipe to be able to cough out all of the infection, not one that collapses when he coughs trapping the bad things inside. He continues to acquire new and different dangerous bacteria. Some of it is treatable, other isn't.

Let him just be a kid. Make sure you wash his hands good after he's outside playing. Be careful in soil or sitting water. Some pets carry bacteria that can be harmful so just be cautious. He needs a high calorie diet. He needs another test. He needs this medication at 11pm. No hot tubs. Try to stay away from anyone who might be sick. Don't be around other people with CF. We need to see you every 3 months when he's healthy. Keep him hydrated. Don't give him apple juice because the sugar is causing a problem with his stool. Take these pills. Add this treatment. Drink this half n half.  Add more airway clearance. We're so close to a cure. He needs to be admitted.

I understand the importance of doing everything I listed above but it is a lot and it is constant. The physical demands are a lot, for him and for us. The mental and emotional are more. First and foremost, I am his mother. I want him to run and jump and play and get dirty and watch movies and eat snacks and sleep well. I just want him to be, just like the other kids. He gets treats and he gets punished just like everyone else. I don't want him to have CF. It's not fair that he has to sit for hours every day taking medications and doing treatments. He doesn't want to do it and I don't want him to have to do it. So what can I do.

I have this feeling in my gut that the place that we go to keep him well is the place that is making him sick. I don't have proof of this, other than the research that came out showing that CF patients are sometimes passing these dangerous pathogens to and from one another in the clinic and the hospital. That was enough to both scare me and validate my fear. Maybe its his vulnerable trachea that's trapping things in even when we're doing our best to prevent that from happening. Maybe its just his CF. Maybe he was just going to pick up these bugs regardless of what we did or how his windpipe looked. Its impossible to know all of that, but it has created a worry and a fear in me that I've gotta find a way to deal with.

Drew was supposed to go to clinic this morning. Yesterday afternoon I cancelled. Again, I am 100% clear on the need for his doctor and other clinicians to see him on a regular basis. They need to monitor his health closely, to see what he looks like when he's good so that they can appropriately treat him and understand the what's going on when he's not good. I get that. But I am fearing that the bacteria that he has now and that he has grown in the past has come from the clinic, and I am scared to death to put him at risk of acquiring something new. The doctors there get it. They don't know the extent to which this passing of bacteria is happening, but they acknowledge that its happening. They gown and glove and mask in between patients. They're continually working on ways to improve outcomes and avoid any direct or indirect patient to patient contact. But while they work on that and try new things, Drew continues to acquire new pathogens and his lungs, over the long term, can't handle that. He's not necessarily getting more than other kids or worse ones than other kids, he's just getting things and I'm starting to believe that putting him at any risk isn't worth the benefits of seeing his team. But I'm torn because I know that better outcomes are achieved by regular visits with the clinical team. A better outcome for him will be achieved by keeping his lungs free and clear of any and all bacteria, and how we do that is where I'm stuck.

While we wait for our cure, a cure that is so close I can almost taste it, I need to keep him healthy. I cannot afford lung function decline in a kid who hasn't even achieved peak lung function yet. I don't think that my concerns are irrational as they've been validated by research data. Perhaps not to the extent that I'm going with him having acquired everything from the clinic, but it's definitely happening. I try my best to let him be a kid in the midst of all that he has to do all day everyday. He doesn't know any other way. His instincts tell him that it shouldn't be this way, but his mama insists upon it as a part of our daily routine and so he does it. I will take him back to the clinic, and soon. I just needed a little more time to sort out all of these fears and find a way to keep Drew safe and healthy, just for a little while longer.

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