Monday, September 23, 2013

Ah the joys of CF life

As most of you who read my blog know my son has Cystic Fibrosis. This is normally very manageable for us (as we have dealt with it FOREVER). But there comes a time in CF life when the unpredictability of the disease deals us a low down dirty hand, and it comes in the form of a wonderful bacteria called Psuedomonas Aeruginosa. CF lungs are full of crappy mucus all the time which makes them a great little breeding ground for this nasty little bacteria. It loves to reek havoc in CF lungs. 

Most CF patients are infiltrated by this little culprit early in their lives, before the age of 10. And once it takes up residence there is virtually no getting rid of it. It just stays there and decides to show itself at the crappiest times. Once they culture (a suptum culture taken either with a throat swab or coughed up) psuedomonas a whole new world of worries open up for us parents/caregivers. Unfortunately there is no blocking the transmission of this wonderful bacteria. It can reside anywhere, in the ground, in your dirty sink drain, in the mold you don't know you have growing in your house, on a shopping cart at the get my point IT'S EVERYWHERE!  We do our best to keep our kids from coming into known contact points (other CF patients), but even our non-CF kids can carry this little bacteria home (and they just have common cold symptoms if anything) and pass it on.

We have fought this battle before. Back in 2006-2008 Zach was infiltrated by the little bugger. He was hospitalized 3 times for complications from it, at one point part of his trachea had collapsed because of it. But, miraculously, we snuffed the little pest out. We have not cultured positive for psuedomonas in 5 years. So imagine my surprise when I get a call from our CF clinic Friday telling me the little nasty has decided to show itself once again in my little mans lungs. Now I knew he was getting sick. We thought it was allergies or a cold. He wasn't coughing too much more than usual so I wasn't at my "freak out" point yet. (Let me add here, we have "freak out" points at least once a year when the MRSA in his lungs decides it wants to get full blown and nasty on us.) So the call comes in and I instantly hit "freak out" point. This is not a fun point for me to reach and Zach tends to hate it when I reach it. 

So now the real fun begins. Another trip to the CF clinic to be trained on how to use the new Tobi pod-inhaler (before it was in nebulized form. Tobramycin is a heavy duty antibiotic that is used to treat psuedomonas) and EXTRA precautions at school now. In the past we haven't had to worry about the implications of psuedomonas at school because Zach was the only CFer in school. Now we do. There is another child in his grade at school who has CF too. So I had to call the school nurse, let her know whats going on and then make the dreaded phone call to the other parent (because we talk and the kids are friends). 

Let me tell ya, nothing makes you feel like more of an ass than having to call another CF parent and tell them that your child has a potentially fatal infection that spreads super easy and super quick to other CFers. But I am concerned about her kids health as much as my own, so I made the call. And wanted to cry when I told her. See Zach isn't the only one not feeling well right now. So now I have her freaked out and worried and this other kid too. But I had to do it. And I know she would show me the same consideration.

Now, our kids know they can't be within 6 feet of each other without masking up. They are not allowed to be in classes with each other and they both know what precautions they need to take with each other. The kicker with having 2 kids in the same grade at the same school... you have to think of EVERY they cross paths at lunch, are the lunch tables being cleaned they way they should, what about gym equipment, are we making sure they are not touching the same gym stuff, and door handles...OMG how much I dread door handles and desks! All of their teachers know to make sure they are not sitting at the same desks, but still this little bugger can live on ANYTHING! Thank God our school nurse is fantastic and the teachers very understanding and accommodating to these 2 kids. 

So, I take Zach up to the clinic this morning to be trained on the pod-inhaler. And while we are there have them check his o2 levels just to be on the safe side because he is worse now then he was last week when we went. I was up 1/2 the night listening to his crappy breathing. Thank goodness his levels are still good. He learned how to use the inhaler. We stopped and picked up tissues (because the kid is coughing up a ton of nice green gobs of mucus) and antibacterial wipes so he can wipe down his desk before he sits at it (which he is not happy about because it makes him stand out), just to be on the safe side. Trying to explain to a 12 year old, who doesn't want to be seen as different, that we have to take these extra precautions so he doesn't end up in the hospital is like ramming your head against a brick wall hoping to break through it. 

Tonight we will start the antibiotic, unlike other illness where you see a difference quickly and they aren't contagious after the first couple of doses, it will take a while to see a health difference and he will remain contagious to the other CF kid. We wont know if the Tobi kicks out the infection until his next culture. And it may not. We may be dealing with this for the rest of his life, which means he will be on the antibiotics every other month for...well forever. WHICH SUCKS! And if the Tobi doesn't help??? Well that means we end up in the hospital for IV's and hope and pray that this stupid bacteria doesn't cause to much damage in his lungs.

Oh how I hate you Cystic Fibrosis!