Looks Great on the Outside... Mostly

I think we are going to remember this year as the year that kicked us repeatedly in the kidneys. That said, we were able to recover each time and we remain relatively intact (although panting heavily). This seems to be the MO of many of our friends. Separations, deployments, cancer, business fires, unemployment, heart attacks, all in our close vicinity have reminded us that although we have had a rough year, we have fared better than many. Challenging. This has been a challenging year.

So where are we as we close in on the end of 2011? Toe is on two weeks of antibiotics for a mild exacerbation (read lingering cough) that won't go away.

Our last visit to the CF clinic shook us a little. They took X rays and informed us that Toe has mild airway thickening. No scar tissue, but there is a difference from his last lung X-ray. This should not surprise us as we know this disease is progressive and the last X rays were taken when he was a baby (he will be four in January. He is growing so fast!).

We were also informed that although Toe has been growing steadily, his height/weight ratio is not acceptable. It has been proven that young children with CF who have a ratio above the 50th percentile have considerably better lung development. Toe is tall and skinny. In August he was in the 8th percentile. We have been able (through extra fatty snacks) to get him up to the 22nd percentile, but we were informed at the last visit that if we can't get his height/weight ratio up to the 50th percentile in the next 6 months (and keep it there) they will recommend having a G-tube (gastrointestinal tube) placed permanently in his belly. It would remain there at least through his teenage years, whether we would be using it or not, as teenagers often also need the extra  "boost." Every night we would feed Toe enriched formula via IV drip through the G-tube. The nutritionist brought out a teddy bear with a g-tube "button" to show to Toby and had the talk with him. We left the clinic reeling.

I recognize a G-tube is not the end of the world; it may very well be the best choice for him. But here's the trick for us about having a young child with CF: sometimes it becomes easy to pretend that he's a healthy child. I admit, we are always doing unusual things. I don't know any other three year old children who have to do breathing treatments via nebulizer and then percussive therapy twice a day and who take enzymes (I do know they are out there, but still...) But with Toe as our only child, we have been able to normalize the abnormal, the excessive hand-washing,  the treatments and medications. He is not in school yet, so he does not know his peers are doing anything different. We feel like a normal family. And the last few years, our visits to the clinic have been pretty standard: keep up the good work, carry on.

He looks normal. People who know of his condition always comment on how good he looks.  How healthy. People who don't know would never suspect. He is energetic and charming and verbal and perfect.  Sometimes it is easy to live in denial, to imagine that we will be able to keep him healthy until a cure is found and then he can lead a normal life. But meanwhile, things are progressing inside of him.

And I have to face the harsh reality that no matter how hard we are trying, no matter how much we follow the guidelines, our boy is sick and this disease is progressive and we can't fix him. We have the willpower and we will fight every step of the way; but there are times it won't be good enough.

The nutritionist said at the visit (Monday before last) that if his weight had not come up since the August visit, she would have pushed to have him admitted into the hospital for the G-tube surgery that day. And it could have been up to a 10 day stay (7 days to get his lungs as healthy as possible for the surgery and then 2-3 days after the surgery for recovery. If his lungs were in good shape, it could have been as few as 3 days). Admitted that day. I was struck by how imminent a hospital stay could be, just out of the blue. Thought we were going in for a standard check-up and have my child admitted for almost two weeks.  Kind of makes you not want to make any plans...

We are discovering and are constantly reminded that this disease is working in unseen ways, that we will have periods of calm, but there are unpredictable storms on the horizon.

My sister tells me I should join a support group online. Patients with CF are not encouraged to be in close proximity of each other because they can transmit various lung bacteria to each other, so there are not huge gatherings. They have a support group meeting for parents two hours away once a month, but we have so far been unable to attend... Honestly, I'm not sure if I'm ready to see the big picture. Gradual shocks that we then adapt to and incorporate into our lives is about what I can handle for now. I don't know.

I'm not writing this for advice, or even words of encouragement. I'm just writing because this is a very real part of our lives and sometimes it is easier to post something than to have a conversation about it. I sometimes feel too raw for that.

And then my son comes to me and looks me in the eye and says, "Mom, pay attention to me," and I look into his blue eyes and see that I am not being present.  He is here, right now. Agreeing to take the meds (actually enjoying the orange flavor of the cephalexin), doing the breathing treatments without complaints (even though he does not like them), and enjoying every moment of life. It's for him. It's all for him and he has such grace, I'd better bring my A game. And we'll face the G tube, surgeries, whatever comes.

In the meantime, I'm baking pies to fatten the boy up. We're not to the G tube yet...

Off to be a mom....