Saturday, January 2, 2010
The Good, The Bad, The Ugly
Just when we thought things were improving...the culture results came back.
Both Cayden and Trinity are growing a type of influenza bacteria. Check. More serious: Trinity is growing pseudomonas (confession: I always have to google how to spell this one!). Now to really capture the essence of why this is so serious take a step back in time to say 30 years ago. Once a kid with CF caught pseudomonas they never got rid of it and usually it was their death sentence. Now today it is still very, very serious but there is something we CAN to about it: TOBI! TOBI is a shortened name for tobramycin (another word I google to spell correctly) an antibiotic nebulized drug which used to be only given intravenously (ie given via IV inpatient only). There's no nice way of saying it so I'll just be blunt with you all: TOBI sucks! Its given twice a day AFTER chest therapy and lasts twice as long as a typically nebulized drug. Therapy=20 minutes + TOBI=30 minutes x 2= nearly 2 hours of my life involved in one kids regimen for at least 30 days. If one round isn't enough we go back at it again for round two. Trinity will be prescribed an oral antibiotic, CIRPRO to fight off the pseudo as well.
Now, Cayden's dilemma. He grew MRSA which is an antibiotic-resistant bacteria which is not so much a concern to his health but those with weakened or compromised immune systems fighting cancer. The 5th graders at St. John's visit the PreK students once or twice a month to do "buddy projects." Connor, a 5th grader battling cancer, is one of the students that comes to Cayden's class. So more than likely Cayden will have to wear a mask when Connor visits so he doesn't spread MRSA. This is something I'll have to talk to the doctors about more on Monday. Cayden had MRSA in May of 2006 and successfully beat it 6 months later. For him to be off the record for having MRSA and going through all the health protocol for being at clinic he will need to have 3 negative cultures on 3 separate visits. Cayden is a fighter and I have no doubt in my mind that he will overcome this again! So onto the meds to help us to that. The doctor will be putting him on an antibiotic called bactrim (a familiar name in the Topel house) and another antibiotic which I don't remember the name but the side effects include turning his sweat, urine, and bowels orange. When I told Cayden about this he just about bust a gut laughing he thought it was soooo funny! I can't say his reaction surprised me at all.
This is the first time having 2 kids with CF that they have both, at the SAME time, been sick with such serious things. And it's def. not the first. But the hard part is keeping their germs to themselves. No more kisses on the lips. Just cheek kisses for now. It breaks my heart to tell Cayden he can't kiss Trinity. It's by no means the worst. The worst would be a hospital visit or facing a lung transplant. I look at all the families around me that have dealt or are dealing with cancer and I can't complain. The cross that I was given has a lot of hope in it. We are extremely lucky to be so near a cure. My heart goes out to those families because while I have NO idea what they are going through I have somewhat of an idea. We are so blessed to be in a community of friends and family who care and love us so very much. We are blessed by faithful people who we know will intercede for us. It is good to know we will get through this. Thank you for your support and prayers. If you are reading this, please know that we will be praying in thanksgiving for you.
Jesus, the master physician please heal Cayden and Trinity and hold them in the palm of your hands.