Today I missed a phone call. I heard my phone ding to let me know that there was a message. I looked at the missed calls and there was Barbara Crews's name (CF specialist/nurse). I didn't even need to listen to the message to know why she was calling. Throat culture results. She has never called me after clinic with results, meaning there is nothing to report. I immediately called her back and she knew it was me. She picked up the phone without even saying hello..."Jenny". I said, "What are you going to tell me?" She says,"We grew Pseudomonas."
Dang it. Darn it. Poop.
I knew it. I knew it when I saw her name as my missed call. We are all surprised Bryce cultured pseudomonas. He has been so healthy, but CFers produce mucus that just love pseudomonas and he could have picked it up from anywhere. Psudomonas is an evil villain for CFers, but we have a battle plan to get rid of it.
Basically it goes something like this...
There are 2 types and from what I understand there are varying levels of severity when it comes to psudomonas. I did google information on it to share here with you, but really...it's rather complicated so I am going to give it to you the way it was given to me. The 2 types are mucoid and non-mucoid. Bryce has cultured the non-mucoid and the level of severity is rare. What this means is that if you had to choose, Bryce has cultured the type you would want to deal with. His culture showed the smallest hint of non-mucoid psuedomonas, which is typically easier to treat. We have a higher chance that the antibiotics will get in there and kill this stuff. So, it's not the best news, but it's good news that we have a fighting chance to get rid of this crap. Yea...I said it, it's crap.
Our battle plan: Bryce is going to be starting on Cipro, Culterelle (over counter) and Tobi. He will take Cipro an oral antibiotic 2 times a day for 2 weeks. A cap full of the Culterelle for 2 weeks to replenish the good bacteria your body produces and then Tobi is an inhaled antibiotic (for the nebulizer) to be taken 2 times a day for 28 days. Oh joy. I am so looking forward to fighting Bryce 2 times a day for 15 mins each to keep his neb mask on. You want to know what is really crazy - one cycle of the Tobi - that's 28 days, is $3500! SAY WHAT?! If I have said it once I have said it a million times, thank the good Lord above that we have insurance. I'm pretty positive insurance will cover this, but really people...$3500. I just don't get it. So between his recent clinic visit and his new Tobi prescription Bryce has already met his insurance deductible for the year.
So - after the 28 days are up we will go back in for another culture. The results should be back to us within 4 days and hopefully we will get a negative culture. If that is the case he can go about his business until this happens again (changes are this will happen again as 85% of CFers will colonize psuedomonas), but if the culture comes back positive it's off to the hospital we go for some IV antibiotics. Pray that we kill this stuff and keep Bryce out of the hospital.
I know that things could be worse and I know there are kids of all ages and adults that are dealing with far more than Bryce, but none-the-less it stinks. All the more reason for ALL OF US to get out there and raise money to help fight this horrible PROGRESSIVE disease. I hated the feeling I had after the phone call. I know this is part of it and part of our life, but I still hate it. I hate that Bryce and others have to go through this. I guess what really bothers me is that there are so many little ones dealing with this. I feel almost guilty for thinking it, but I'm like how and I going to fit all of this stuff into one day and still be able to give my other children and my husband the attention they need from me. Plus keep up with work and the house and Sydney's homework and keep in touch with family and friends. AHHHH! It's hard. None only do the treatments take up time, but cleaning the equipment he uses takes time. Everything has to be sterilized and completely dried before it can be used again. I know...I'm complaining about trivial things, but sometimes it's hard to think about fitting one more thing into our schedule. I'm just nervous. I know once we get into this cycle it will become a normal routine for us.
Ok - sorry to vent. Just wanted to keep you all in the loop and ask that you pray for Bryce and pray that the meds do their job this first time around so we can avoid a hospital visit.
Hugs to all.
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