We got there for an early appointment and her Dr. came in and stayed in the room with us for about an hour. I have been impressed with the time she puts in with Ayla at each visit.
I called them because Ayla had been coughing at night for the last 3 nights and explained to her that she has had a cough/cold on and off since school started :(
How did I know this would happen......
Her Dr. said it didn't seem like school liked her much.....and that we would need to "wait and see" how sick she got when I mentioned I struggled with the decision to put her into school. And now having seen how much she loves it I will be really upset if I have to take her out.
She listened to her and said she heard a lot of crackles going on in her lungs, and we need to get rid of them. She told me what her plan would be if the throat culture came back showing Psuedomonas or something else....which is going to be IVAnti-biotics. She asked me if I were comfortable doing those at home (which I said yes to..anything to avoid the hospital) but that she would have to come in for a PICC Line (central line). And then be on meds intravenously for 2 weeks. She also wants to start her on a new cycle of meds through her nebulizer to eradicate the infection.
3 weeks of each:
Cayston
CIPRO
off 2 weeks
TOBI
CIPRO
off 2 weeks
Cayston
CIPRO
off 2 weeks
Can I just say that I am so over Psuedomonas! I am so over all these extra treatments, all the time that Ayla spends hooked up to machines. I am so upset at the thought of having her on IV meds and having an IV in all the time for 2 weeks. That means I would have to take her out of school since I am sure they would not allow her to come with a needle in her arm and even if they would I will have to be administering medication and doing treatments during the school day hours anyhow.
This will be the first time Ayla has needed a "tune up" at home or in the hospital. I have always put a lot of stock in the fact that she has always bounced back and never required a hospital stay.
We will have to wait on culture results, I am not sure when I will hear or how long it takes to grow what it will grow. I am hoping I know by the weekend.
I am just praying that this is just a cold and that nothing grows on her culture. If not we will deal with it just like all the other CF families do. Hospitals, medications and treatments are all part of CF and I will have to be okay with the fact that Ayla may not be immune to them all-all the time.
I'm feeling a little negative today, it doesn't help that I didn't sleep last night and Im 7 months pregnant with a child who could also have......No I don't like even saying the words....so I won't....I think maybe I will feel better after I get some sleep but I really don't even want to talk about it..luckily I have this blog so I don't have to.
On a good note Ayla gained a pound and grew an inch & a half since we were there a month ago! That was a nice surprise!
So for now-we wait.......
Posts
I will be praying.
ReplyDeleteI feel for you! I know exactly how you feel, always wondering if your making the right decisions, always mad at CF for causing such headaches and stress in your life. We've done IV a few times now, both in the hospital and at home.
ReplyDeleteIt's a pain at home when you have to wake the kids up to do the treatments on a specific schedule and rearrange your life to meet that schedule, but just keep in mind that it's better than being in the hospital. I'm sure if you talked to Aylas school and they knew the "emergency" procedure for if something happens to the PICC, they might not have a problem with her being there. On the other hand, some R&R at home for a few weeks might be just what she needs. We do our drugs every 8 hours, trying to space them so it's not to late at night or to early in the morning (we do 7am, 3pm, 11pm). The time goes by fast and will hopefully clean up whatever is causing her all this trouble. I hope whatever happens goes quickly and easily for you and that Ayla is feeling better in no time!