Figured I would do an update as promised. So the plan was to discuss doing desensitization with the doctors, well I seen an on call doctor all weekend that I wasn't comfortable with, and maybe that's because he comes in at 6AM!!! If you know me, you know that I am not a morning person at all! I never have been, so I don't really wake up if doctor's come in that early. Doctors that see me on a regular basis know this and they will come by a little later when they know I will be up, unless they absolutely can't then I understand they see me earlier. So anyways, I decided to wait until today to discuss it. But in the mean time I was still on Tobramycin and Zosyn and they added colitine aerosol. Well because of it being "intermediate" to my bugs they decided running it 24 hours instead of a one hour bag every 6 hours would be more effective. I have no problem with this but here was the problem, when they put my PICC in they only put a single lumen, well Tobramycin and Zosyn are not compatible, so this meant I needed a double ended hookup or lumen. Basically so they could run Tobra every 12 hours without having to stop the Zosyn, so I can get 2 meds at once. Well every other time I have had a PICC I have gotten a double lumen, not this time! Never needed a double before, now that I do I don't have one. So Saturday morning they took me back down to have it swapped out with a double, luckily this is quite simple, it took the doctor like 5 minutes and with a little lidocaine I didn't feel a thing. But here's the kicker I was down there for 2 hours for a five minute thing, that was irritating. So that was my drama for the weekend! LOL But after that it was a great weekend, Mom and Dad brought Colton down to visit and brought me TONS of candy and goodies! And a huge canister full of candy for my wonderful nurses! Was really great to see Colton, and he told the nurse the sweetest thing, she asked what was on top of his Christmas list and he said for me to feel better and come home <3 My heart melted! I love that boy! So for whatever reason, maybe all the excitement Saturday, I was exhausted Sunday and napped a lot. So finally to today, bless the doctor he didn't come in until about 5pm! I discussed my thought process on the desensitization and wanted to get the best treatment out of my stay and fear of losing lung function. He said he would discuss it with the other CF doctors and see what they say, but he thinks I will get the results I'm looking for from the treatment I'm on. So I guess I'll find out tomorrow what they think all together. My plan is to get out Friday, with home IVs for another week or so. I guess that's all for now :) As if that's not enough! LOL
You are always in our thoughts and prayers. Aleeya goes down to Ann Arbor Wednesday and I know we are getting closer to a picc line with her. You are always an amazing support for her/us and we Thank-You so much. My heart breaks for you everytime you go in and I pray that you get home, get feeling better than ever and have a BEAUTIFUL, infection free Christmas. God Bless you and your family. We love you all.
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