For some reason I thought it was a good idea to administer the Ceftaz in the middle of the night instead of at something reasonable like 10:00 PM and 6:00 AM. Greg and I both agreed 3:00 AM made sense "because it's easier to go back to sleep in the middle of the night." (That's a quote from Greg.) Plus, then my daytime dose would be at 11:00 AM, which would make it a lot easier to get out of the house and do stuff, instead of having to worry about running home to take my med out of the fridge.
Right. Greg has been awesome and getting up at 2:00 to take the Ceftaz out of the fridge so that I don't have to wake up at 2:00 and 3:00. And he can go right back to sleep. The problem is, I need to be "on" in order to administer the med, so, once I have been awake and concentrating for 15 minutes, I have a hard time falling back to sleep. Added to that the facts that I was up coughing half the night for two weeks before starting IVs, I can't go to bed before 10:00 because I have to pump, and Lily wakes up at 6:00 every morning, (and sometimes earlier), I am absolutely exhausted! And this morning I could not fall back to sleep after my alarm went off at 3:00. I think I am going to start shifting my schedule for the last few days of this medication, because I feel like I have a newborn without the screaming baby.
Oh, and CF clinic called earlier this week and wants me to be on IVs for two weeks. I almost started crying. They said it was because I was having such a hard time kicking this thing and orals didn't work. I was confused because I thought the reason oral didn't work was because they were treating me for Staph when I had PA. Anyway, the IVs have worked great and I am staying on them for two weeks. I've felt back to 100% for several days now, so hopefully the extra days on the meds are doing some hard-core ass kicking.
I will admit that I did find it ironic that they also told me they wanted me to do a 14-day course "because you are tired from taking care of a baby." Actually, I am tired from taking these medications!
{disneyland day one}
6 years ago
3 comments:
How often are you on IV's? Cheyenne usually does 2-3 weeks in the hospital and 2-4 weeks at home, every 3 months. She was in the hospital for two weeks the end of February-beginning of March, did home IV's and then followed with weeks of orals. She has been off of all antibiotics for two weeks and is sick again. I have a call in to the clinic, but of course it hasnt done any good. Can you offer any suggestions? BTW, she is 10.
I hope you feel better soon!!! :(
Debbie, This is my first time on IVs in a long time - I was on them for two days about seven years ago, and my last long course was 22 years ago (I was in the hospital for 10 days and then did home IVs).
I am so sorry your daughter has been struggling. It is so unfair for a 10 year old to have to deal with all that CF entails! I don't really have any good advice other than what your CF team has probably already told you - compliance with meds, exercise, and getting enough sleep are the things I try to focus on. But I also am lucky and have a "mild" genotype.
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