It’s Time…
Written by Janna
Friday, 3 September 2010 01:21
Culture results are now in…not shocking by any means…just disappointing. Julia has tested positive for pseudomonas and Wednesday is her big day. We will be heading into Primary Children’s Medical Center on Wednesday at 1:00 to be admitted for a “clean-out.” We have been preparing mentally for this for quite a while now as the trend with Julia’s cultures seems to be pseudomonas positive. I have already described what a clean-out is to my loyal readers, but for any newbies out there, a clean-out consists of a PICC line placement and a very strong dosage of various antibiotics. Julia’s treatments will be bumped up to four times daily, instead of her standard two. The duration of a clean-out is typically two weeks…yes a two week stay in the “hole” as many CFers call it.
My hope is that Julia will only be kept in the hole for three to four days. Why so short? I’m hoping Julia’s CF team feels we’re are competent enough to administer IV antibiotics at home. So, we hope that after a few days, Julia will be sent home with PICC line in place and a rigorous daily schedule of treatments to be accomplished. If not, we’re looking at a two week stay at PCMC. That’s a long time!
I am very numb at this point. Many experienced CF parents are probably rolling their eyes and saying, “Buck up sister!” This is all so new to me, to our family, so it’s a big deal right now. I’m sure years down the road, no one will even know when Julia even goes in because it will just be a part of life, a part of what we do to keep her healthy.
I never imagined in my life that any of my children would have to endure something like CF. I would have never signed up for this voluntarily. We have been born into this CF family, a family that you don’t choose to be a part of, a family that I would adopt out of if I could, but a family that is simply wonderful.
However, CF is gonna wish it didn’t choose our family, because this family has a momma that will give anyone and anything a good arse kickin’ if s/he messes with one of her kids. Look out, because I’m commin’ for you CF, so you’d better hide and take your little buddy, pseudomonas, with you!
Our neighborhood is simply fantastic! They have our backs and I know that we’ll get through this one and many more to follow.
FUCF
Determined,
Julia’s Momma
Julia...she's simply amazing...what can I say?
Let me know if you need any help!
Janna is she going to be in ICU or a floor room?
It seems that life becomes that hospital, but if you had to be in any hospital this is an amazing one to be in. Do you need someone to take Austin and Olivia or are you and Joey going to switch on and off?
Looking back on Britnee’s big ICU stay, though it was the most stressful thing I’ve ever been through to be honest, it was also one of the most spiritually amazing times with a wonderful spiritual experience that reminded me that God is mindful of these children who suffer so much. We have relatives beyond the veil that are mindful of them as well. They will be watching over her and you and your family.
I will call you guys
love
Shauna
Janna, I hope everything get better soon, I will keep all of you in my prayers.
Love,
Maria
Janna, I’m so sorry, how hard this is for your family! Poor little Julia
I’m not rolling my eyes!! The hole sucks, no matter how great the hospital or nurses are! I hope she gets to go home soon too. I think that every hospital visit she has to do in her life will be a big deal that deserves a lot of understanding, and sympathy from everyone. At least that’s what I want when my little one and our family suffers from her being in the hole. Please let me know if there is anything I can do!
Wish this could wait till Thanksgiving break and I would be there for the week. Elisa has offered her help, so take her up on it. Be strong. You and the family have been in my prayers. Julia is a trooper and she will be great. Hang in there. We love you all.