Category: PCMC
Today is a day of firsts for Julia. It was her first day of three-year-old preschool and her first trip to the hospital for a clean-out. Let’s start with preschool…
Julia goes on safari on her first day of preschool!
Oakwood here I come!
Another first…Julia’s first clean-out. Julia is so brave. She has been handling things like a pro! Gotta love this girl…
Heading into PCMC for Julia's first clean-out
Julia waits for IV to be placed. She was so brave. She only cried after it was done...and she did call it, "Stupid!" The nurses could only agree.
Waiting for the PICC to be placed. Julia was starving...asking over and over for chicken strips and chocolate milk.
Julia now has a PICC, IV is now out and this girl got to eat some homemade chicken nuggets and chocolate milk!
I think the hardest times for me were when Julia got the IV placed and when I had to leave the room for the team to place her PICC. I teared up with her when she cried after her IV. She was so brave, but I could tell how scared she really was. The funny part was when Julia got her pre-PICC drugs. She had been complaining for over an hour about how hungry she was and how she wanted to go home, but the second the drugs hit her little body, she started laughing, just cracking up. I couldn’t help but laugh right along with her. I have video of a little bit of her laughing and her “happy” time. Ahhh, what great drugs they have here. Makes getting a PICC quite the happy, laughing experience. She shouldn’t remember any of the PICC line going in as they also gave her a “forgetting” drug along with the happy, relaxing drugs.
Please visit if you can. Julia will surely be very happy to see any familiar faces. We are in 3047 and can have visitors ’til 10 PM, but come before 9 as we will need to sleep. We start the treatment schedule tomorrow and it should include four treatments a day along with her intravenous antibiotics.
We truly feel of your love and support at this time as it has picked us up and carried us along. We couldn’t survive this without such loving, generous support. It brings tears to my eyes thinking about all of our family and friends who are truly making this difficult time just a bit more pleasant. We love you all and are so blessed to have you in our lives!
Pseudomonas...or pickles as Julia would say.
I have been struggling with what to tell Julia about her clean-out. I have always told my children when they are going to the doctor…when they should be expecting a shot…what will be happening to them, as I believe that it relieves much of the anxiety that comes with doctors, nurses, and hospitals. If a shot is going to be happening, they know it and expect it. If a “throat tickle” is in store, Julia knows it. So how do you explain to a three-year-old what will be happening to them with a clean-out?
This is kinda how it went:
“Julia, can I tell you something serious?”
“Yeah.”
“Julia, you and mommy have to pack a bag and go up to the hospital to spend a few nights. The doctor will give you some special medicine that will make you fall asleep, and when you wake up, you’ll have a little tube in your arm. The doctor will be putting some special medicine in your arm. The medicine will go up your arm to your lungs to kill the yucky “pickles” that have been growing in your lungs.”
Julia just nodded a lot and then simply said, “I don’t want a poke.”
I reminded her of all of the wonderful things about PCMC, like the cafeteria, stickers, special treats and prizes, and best of all, Nutty Guys jumbo bag of gumballs!
This was the best I could come up with. Tomorrow is the big day! If you would like to come and visit Julia at the hospital…please, please do! She would love to see any and all…I’ll let you know the visiting rules as soon as I learn them. Wish us luck!
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?
Today we headed up to Primary Children’s Medical Center for another culture…or as we tell Julia, a “throat tickle.” That’s a bit misleading as there is nothing tickling about a long q-tip being jabbed down your throat and swirled around, causing coughing, gagging, and near vomiting. Julia hates the “throat tickle.” I can’t say that I blame her, but it has to be better than a shot, right?
Well, now we wait a week or so for results. This will be a really long wait for me because the consequences of a positive test have been weighing on my mind for several weeks now. Positive means “clean-out” time for Julia. If it’s negative…party time! I’m the type of person who expects the worst and hopes for the best. Some may call me a negative person, or a pessimist, but this works for me. This disease seems to do nothing but disappoint, so I like to prepare, or gear up for the disappointment. Why expect the best, only to be devastated if things don’t go your way? This week we are thinking negative…negative culture results…yes please! Pseudomonas, please just go away!
Olivia and Julia get acquainted with rainbow horse outside of PCMC.
Olivia and Julia love seeing the "castle" at Westminster. Mom's school is so cool that it even has a castle! My girls are the cutest looking freshmen on campus.
This one's just for fun! I call it...Julia discovers her self worth.
Julia leaving clinic at PCMC...nothing like a piece of your heart walking around outside your body.
Today was Julia’s CF clinic appointment. Every three months Julia has an appointment up at Primary Children’s Medical Center. These appointments help us give Julia the best care we possibly can. We had a great visit today! Julia has gained over three pounds in the last few months and has grown a few inches as well. She is tall and lean and completely average. This is great news! It’s easier for a CFer to stay healthy with a little meat on their bones.
Today was different because Julia is now old enough to stand on the big kid scale and be measured on the wall with the big kid ruler. She really hated the baby scale and the thing she had to lay down on to get her height.
We are also going to start practicing using a mouth piece for a few minutes during treatment time. A mouth piece is much more effective than a mask in delivering the inhaled medicines to her lungs. So, we will start using a nose plugger and working her slowly into using a mouth piece.
The disappointing news is that a clean-out is lingering in Julia’s very near future. We will be awaiting culture test results this week and will need to make some decisions based on what grows in her culture. For those who don’t know what a clean-out is…it’s a hospital stay that includes a PICC line placement and the use of very strong intravenous antibiotics. A PICC line administers the medicine right to the heart, so it’s pumped through the blood stream to her entire body.
Why would we need to do this? Julia has been growing a certain bacteria in her lungs, pseudomonas, that is known to cause damage and lower lung function. She has also slowly but surely acquired a cough, appearing during evening treatment sessions, that was never present before pseudomonas took up residence in her lungs. The hope is that with strong IV antibiotics, this bug could be cleared from her lungs, or at least get a good arse kicking and keep it in check for a while.
We won’t be making any decisions yet…waiting for a little more information and some test results. This is something that comes along with this horrible disease. Julia looks perfect on the outside, but every day, every minute there’s a battle going on inside her little body. It’s astonishing what this three year old has to do each day just to be able to breathe…something we all take for granted.
I’m a bit of a mess right now as it takes me an adjustment period when we get new things added onto the dinner plate of Julia’s care. I hate this. I hate CF. We’re just gearing up to fight the good fight and give pseudomonas a beating like no other.