Cayston in the Hospital

[jayotto]

My daughter, 14 y/o, was admitted again this summer (June 10 - 28, now July 24 - until who knows when). So, this time we went in on Cayston. Our hospital does not supply the Cayston or the machine, so I happily provided those when she was admitted. I came up on her second day, and found out that the RT's go get the medication from the refrigerator and then leave it on the counter. Everything else is up to my daughter. The first night, no one brought her the medication (Of course, I had a nice little chat about that). The second night, the medication was just left on the counter, and she didn't do it. The next night she did it, but when I came up the next day, I found the nebulizer still in 1 piece and not rinsed or taken apart. She claims that no one told her she was responsible for cleaning the nebulizer. She is on Team C, which means she does her treatments at 11 am, 5pm, and 11 pm (which, after everything is done in order - she ends up having to do the Cayston between 12:30 and 1:00 am).

I am so frustrated and questioned the RT's and the doctors about why, if the clinic prescribes Cayston, the hospital can't provide it or at least monitor the kids to ensure they are doing the Cayston treatments. Because the nebulizer was not cleaned properly, it is now clogged, so it doesn't work properly. Because it is clogged, the machine is now thinking that the medicine is still being inhaled, so it doesn't turn off correctly. While she is 14, I do not even allow her to work this machine at home because, from my understanding, I will be responsible for paying for a new one, which I have heard is expensive.

Anyone else have this issue with their hospital?

 

[ryry11]

Hi,

My doctors usually just hold off on inhaled abx while I am admitted because I am already on Tobra or something else for the pseudo. If you want her on it, I would start by having a discussion with your doctors about her schedule. Could a new schedule be created that allows you to supervise all treatments? If that will not work, I would talk to the head RT about the issues and see what they suggest. You may also want to involve a social worker who knows the cost of the machine and med and your doc. Get it across to the RT that it is a prescribed treatment, the hospital doesn't provide it's , but it is their responsibility to ensure it is done correctly. Teach them how to do it.

 

[Aboveallislove]

Also I'd ask for disposable neb cups for here while she's there. During a rough month our rt sold us a case at cost for home use at like 2 dollars each. That's what they use in hospital here.

 

[Kyrav]

I get taken off my inhaled TOBI and Cayston while I'm in the hospital. I asked my NP about it once and she said they are fighting the same thing, so when you're on iv TOBI it would kinda be like doubling up.

 

[mysticrose]

My daughter was just in for a quick tune up and surgery while on cayston. We brought the vials and saline in with the exact amount that would be needed for her stay. We explained everything to every nurse that came in. Her cayston was kept in the nurses fridge so the rt had to get a nurse to get it out. It was on the rts schedule. The only problem was at home I try to keep her on an every 8 hr schedule they didn't seem to concerned with that for treatments. When they brought it in we showed them how to mix it and use the machine. A lot of the rts were thrilled to see it in use since they never really get to do it. I would clean the nebs after each use. Surprisingly it worked out much smoother than I had anticipated. Since they are supposed to supervise medication being taken they should watch and make sure she is doing it.

 

[TICMOMOFF1]

Our hospital does not supply Cayston either....They said the same that its not needed while their on the IV antibiotics and when the machine does go out, which is usually at about a year and a half. If you want another its $900. When you start Cayston they send the machine free with the first order and then the machine is not made well and only last about a year to a year and a half....which really is not that long because your only using it half that timesince its taken on/off every 28 days....there is a 2 year warranty on them and I had to send ours back because it quit working 2 days ago and luckily it was under warranty...Foundation Care told me about this on going issue and that insurance companies are not paying for the machine and that they cannot bill for it either no matter what....ugh...it has not helped it seems...she has gotten worse since being on it...so if it gives out we will not take Cayston...