So yesterday I got a delivery from the UPS man.....he brought one large box containing the above items. This is the Altera System by PARI and the nebulizer (which I will show you below), a dvd from the CFF showing recommended cleaning, ziploc containers (I later found out were part of the cleaning process), and a NUK baby bottle sterilizer. I was overwhelmed when I saw all of this stuff. I immediately thought....."This stuff is serious"
I went outside and saw another package. It was a cooler box (which I am used to seeing b/c that's what all of Ayla's monthly medications come in) I opened it up and saw this:
This is the Cayston medication. This stuff is crazy expensive like $6000.00 per month and I have to say I can tell by the packaging! I really like how they have it labeled for you so on those days where the 10+ treatments are all running together, it's plain as day how many Cayston treatments you have done. Very, Very Cool!
This is the nebulizer that is used with the Altera compressor (I will show you below). It has 5 parts...yes 5! They all have to be cleaned and sterilized as follows after each use:
- Wash Hands
- Rinse each piece under warm water for 10 seconds
- Put a small amount of regular dish soap (not white or antibacterial) into ziploc container
- Put neb set into with warm water and put lid on and swish around
- Rinse
- Put into NUK sterilizer for 8 minutes
- Air Dry
This little guy is pretty complicated.....but it is really cool the way it all works together.
This thing is pretty cool. It runs off batteries or can be plugged into an outlet. It makes absolutely no noise (which we love) we are always fighting to hear whatever movie or game Ayla is watching/playing while doing her treatments. The best part is it runs for about 3 minutes and needs to be given 3 times a day. Ayla says it tastes like "berry-blast ring pops" and she says she likes to do it. She is such a little trooper.
This is what it all looks like when your ready to do the treatment (not my pic). My hands are going to be so dry after all the washing I do. I stand at the sink and wash nebs for at least 20 minutes a day. We are hoping this treatment does it's job and keeps the Pseudomonas away for good!
Posts
Good luck! WE LOVED the Cayston. Madeline did so well with it! Unfortuneatly, her strain of PA was resistant to it though... Did you know you can also use the xponex inhaler right before cayston (so you don't have to do a neb of abuterol) We asked for it in case we were running errands or needed to do it quick in the car for that second dose. The worst part is the 3 doses a day....It gets harder as you go along. Hope that PA stays away!
ReplyDeleteThat looks like a process! Its nice that they are able to send all of the parts that you need at once, but man is it a lot of cleaning and sterilizing! How do you regularly clean her nebs? Can you use the NUK sterilizer for regular nebs? We use the breast pump sterilizer bags to steam our nebs every night but that little machine looks like it could do the trick too. Hope its all going smoothly and Ayla is feeling and sounding better!
ReplyDeleteErin, I do them all the same now that i have the baby bottle sterilizer. I rinse them with warm water for 10 secs then put them into a container with soapy water (not antibacterial) which i didnt know could damage neb parts and wash. Then air dry and put into sterilizer. And Air dry. Air drying is really important. The CFF sent a dvd with thier recc for cleaning nebs. ANd thats what they reccomend....Hope this helps! Yes it saves time for Ayla but add time for me with all the washing..ha! oh well I guess. I hope you are feeling better!
ReplyDeleteHi Krista. We just got our Cayston set up last night. The pharmacy sent a baby bottle sterilizer with it. The question I have is the sterilizer only runs for 3 minutes, and I just do not think that is enough time to kill things like pseudomonas or MRSA. I halfway expected it to run at least 5, hopefully 10. So I am just trying to find out information about how many minutes are recommended. Found you through Google, so I hope you can help! TY in advance.
ReplyDelete