We are a little over 2 1/2 weeks into our inhaled antibiotic and I have to say, I’m really getting tired of the three times a day treatment routine. It can be very tiring and quite frankly, all I feel like I’m doing is treatments or getting ready for treatments or planning out my schedule around treatments.
However, I’m still holding onto the hope that Cayston is it for Ben and that it will clear up the pseudomonas growing in his lungs. I shared with our NP that my thinking is for Ben to be on Cayston for 2 months straight then culture him, and do on/off months until he has three clear cultures. She said she was fine with this as there is no hand book or manual for CF. Every CFer is different and requires different treatments/routines. They are trying to figure out what works best for Ben and are willing to give Cayston 2 months to prove itself.
I am bummed because this mean we’ll go into our Southern California trip on Cayston. Disneyland, Lego Land, the beach, the zoo are all apart of our plan and it’s going to be annoying to say the least. I guess we can do our Cayston treatments at Disneyland?
Just one of those days in which I wish CF would take a long walk off a short pier.
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hang in there girl...you are amazing and so inspirational. We are praying for Ben's cultures to be negative!
ReplyDeleteWe took Colby to Disneyland and bought a neb compressor that plugs into the lighter and did a treatment in the car!!! You just do what you have to to get you by!!! Best of luck!
ReplyDeleteYes...you can do treatments at Disney! If they do things like they do in Orlando, they will keep your all your supplies in the first aid station so you can do treatment there. They are very accommodating! Sounds like a fun trip. Take me with you. ;)
ReplyDeleteHey girl. We love the Cayston too but feel your pain with this 3 times a day stuff. It feels like feeding, treatment, feeding, treatment, NAP, feeding, treatment, BED. IT is very OVERWHELMING and I can totally relate to how it control so much of your day. It's hard to squeeze in so much knowing to that you have to wash and sterilize for the next one in 4 hours! I feel as though it is working better than TOBI though. I still have hope for both Ben and Madeline to kick this nasty bug. Hang in there- I totally feel your pain too. We are just in this together. :)
ReplyDeleteUgh!! I am SO sorry you have to do Cayston on your vaca. Yuck! Yuck! Yuck! Maybe Cayston will be more fun to do at Disneyland than at home?? I laughed out loud at your comment, "Just one of those days in which I wish CF would take a long walk off a short pier." I do too! :)
ReplyDeleteI have every hope that this will be a short term treatment for Ben as it will see off the pseudo.
ReplyDeleteSoph is currently having four nebbed treatments per day so hear you on the time but we've just fallen into routine now. Huge hugs for you guys, you can do this and when you get the results you guys deserve it will all be worth it.
Enjoy your holidays!
Take care xxx
Hey Margaux! Did we already talk about Disneyland? I just want to make sure you know about the first aid office, and how to get the medical pass so you can go through the handicapped lines and bypass all the people!!!
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