Paradigm Shift....maybe. Day #4 Saturday

I spoke with Dr. Lee yesterday about how long we are going to be here. He brought up that in the fall when they went to the National CF conference, findings were presented that showed that after 14 days of IV's there was declining benefit. That between day 14-21 there really wasn't much that would benefit the patient. This is fairly new and I know some docs have been doing this already but they gather all their data and present it at the conference and then the other docs and centers start implementing new things.

I posted on the CF sites on fb to see what everyone thought and the general consensus was YES, that is the new normal. 14 days.

In some cases you could be on them longer than 14 days. If you start on on IV and part way through they have to switch it either because cultures show you are on the wrong one or you don't see any symptom change within a week, then those 14 days start over. So, in actuality you could be on IV's longer than 14 days.

He told me that means if you stay in the hospital 14 days, you don't do home IV's. Um, excuse me??? Or, if you stay here less than 14 days, then you just do home IV's til 14 days hits.
Ok, we have been on IV's for like 4-6 weeks before. This is really freaking me out. But, in a good way.

It is going to take a little bit for me to wrap my brain around this and I still want to hear from Dr. Carey on what he thinks since he is our main doc. So, I believe this may be a Paradigm shift? Maybe? I won't get all the way on this train until Dr. Carey confirms this in February.

But, I think this means we will be here for shorter stays if the IV's are right and less home stuff. Oh my goodness, I am getting kinda excited.
I also think this may mean we might have to do this more frequently. But we have to just wait and see how he responds and how fast he gets sick again.

It is a good thing in another regard because we are running out of IV's that are showing sensitive to the resistant colonized pseudo and the longer and more frequently you use them, the higher chance they will stop working. So that is good.

We don't know what that means for this stay but we do know that after 14 days, most likely, we won't be on IV's anymore. I am excited because that means K can get back to basketball and PE and running around without the needle in his chest!

His Vit E level came back high so we are discontinuing his extra Vit E we started. His Vit D level came back still too low so we are going from 5,000 IU two times a day of Vit D 3 to 10,000 IU twice a day. Everything else is the same. He still has some crackles in his lower left lobe but this morning the doc said he thinks it sounds a bit better.

I will update when I know more on how long we will be here!
Thanks for your prayers and support!
~Kristi