Riding the Wave

I'm not a surfer, but I am a beach kid. I grew up listening to the low rumble of the ocean on a sandy beach (very different from the ocean on rocks). It's an underlying roar that fills your subconscious, never taking a breath, always powerful and present. Kind of like the circumstances of life. You never know when the next wave is coming and you have to be ready to get on your board or belly and ride it.

I've been worrying again. My family calls me a worry wart and I come by that description honestly. I am part of multi-generation worriers. I have learned many tools over the years to cope with my anxiety/depression and worrying and sometimes I need those tools more than others.

Toe's cough is worse and the waiting is painful. I normally try to spare the general public the waiting and post detailed information when we have a course of action and I have recovered from the anxiety, but I'm having a difficult time with this one and just need to share. I have to keep reminding myself that I just have to ride the wave. This thing is bigger than me and I have no control over it. I just have to ride and stay present and try not to get sucked under.

We were at Doernbecher's Children's hospital last Monday for a regular CF clinic for Toe. He had developed a cough two weeks before and we suspected he had an exacerbation. A CF exacerbation happens when the bad bacteria that lives in the lungs of a CF patient somehow becomes activated and goes on a rampage.To address exacerbations, doctors prescribe massive amounts of antibiotics to tame the bad bacteria down to something manageable.

Our CF nurse describes the normal CF lung state as similar to a container with burning embers in it - during an exacerbation the embers are ignited and truly start to burn. Antibiotics are used to tame the fire and return everything to the ember state. As long as the mucus in Toe's lungs is sticky, we will never get rid of the bacteria completely. I think they give massive amounts of antibiotics and are aggressive with coughs that would otherwise seem benign because they don't want these bacteria building up a tolerance to the antibiotics. It will happen eventually, but lots of small doses would quicken that.

Exacerbations are part of the whole CF deal. We have dealt with them many times and so far we have been very lucky to have mild ones. Usually a two week course of antibiotics clears Toe's cough up. Occasionally we have done two two-week courses. Twice Toe has caught pseudomonas aeruginosa, a REALLY bad, antibiotic resistant bacteria and we have treated those with inhaled and oral antibiotics and gotten rid of them (for the time being). Last year was our second experience with p. aeruginosa and we thought we wouldn't be able to get rid of it. Remarkably, we did and Toe has been exacerbation-free for almost a full year. Before this, he had an exacerbation about every three months. Antibiotics three to four times a year, every year of his life. It's a lot of antibiotics. It kind of goes against all of the common sense about antibiotics, but CF kind of goes against the common sense of everything.

So going into clinic on Monday, we knew what would likely happen. We did not expect his lung function to be as compromised as it was. Three months ago his pulmonary function tests (PFTs - they measure lung capactiy) were at 102 percent. Monday they were at 84 percent (after many tries). With an inhaled steroid, they improved to 91 percent. Many CF parents would be SO grateful for 84 percent lung capacity; but it surprised us how dramatically his PFTs had dropped. Because Toe had p. aeruginosa last year and because he has not been treated in a year, the doctor (our favorite at the clinic) prescribed two kinds of oral antibiotics to be administered simultaneously for two weeks. Toe also must do increase to three breathing treatments a day (from two) for the duration and take nasal steroids to address his stuffy nose. We were instructed to call after a week if his cough did not improve.

Antibiotics make Toe manic. He becomes simultaneously wired and tired. Imagine drinking twelve cups of coffee when you are exhausted and then making your tactic for staying awake to keep talking and moving. It gets progressively worse as the antibiotics do their work. Toe's cough has gotten worse. When he starts coughing, it is hard for him to stop. Activity and temperature change seem to activate his cough. Coming in from recess on Friday (I was volunteering in the classroom), his cough was pretty bad. He has spent the past few days going, moving, pacing, talking, anything to keep himself awake. By about three he is pale and complains of fatigue but keeps going. During third breathing treatment at six, he is nodding off.

And the cough is worse than it was on Monday. We are starting second guess what will happen if he is not better by Tuesday. Will they try another course of antibiotics? Will we need to do a hospital stay for him to get IV antibiotics? The real question is: will we be spending Christmas in the hospital (or the time leading up to it)? Will be going to the hospital Wednesday?

We have put off getting a tree until we find out what we are doing. Toe seems better some and then worse some. We know that sometimes he gets worse before he gets better, but he his generally worse now than he was Monday. Was he this sick underneath and it was all trapped and it's loosening up now? Is he working on something? Will what we're doing be enough?

Besides being wired/tired, pale and moody with a cough, Toe doesn't seem THAT sick. He's not lying on the couch moaning. He's not running a fever. I take that back. I think I'm fooling myself. He's sick.  I see it in everything he does. 

And we're riding the wave. And trying to stay patient with the frenetic energy. And keep up with the kid who wants to play every single second.

Things could be so much worse. Toe's health is pretty great. This is just another exacerbation and if we have to go to the hospital, it will be just another tool to use to get him well.

And we wait. And I worry. And I don't need you to respond - just bearing witness is great. Thanks.