Category: pseudomonas
On Thursday, Julia and I went up to Primary Children’s Medical Center for Julia’s first ever Cayston experience.
Rewind just a bit…ever since Julia contracted pseudomonas, a harmful bacteria damaging her lungs, she has been on a medicine called TOBI. TOBI is an inhaled antibiotic that treats pseudomonas and keeps it under control. The only down side to TOBI is that it takes a loooong time to inhale, 30 minutes to be exact, which adds an additional hour onto Julia’s already hectic treatment schedule. Cayston does the same thing as TOBI. It is an inhaled antibiotic that treats pseudomonas just like TOBI. The truly fantastic thing about Cayston is…it only takes two minutes to neb. I originally said it took three minutes, but I lied. After timing it we found that it was two minutes exactly. TWO MINUTES! I am still in shock at how fast it nebs. It is A-MAZ-ING! Even Julia is surprised at how fast it goes.
Julia is the youngest patient at the Intermountain Cystic Fibrosis center to be on Cayston. She is one amazing four-year-old! I am so excited for her as we are taking back an hour of our day and loving every extra minute of it! Just in case you don’t believe me, we made a little video of Julia inhaling Cayston. It makes her cough a little, but she puts up with it for two minutes. She is such a trooper.
Julia with the Peanuts gang after her first Cayston experience at PCMC.
Altera nebulizer system...it can be battery operated and doesn't make a sound besides a beep.
The Altera is so small...it fits in my hand.
Cayston is different from TOBI in that is has to be mixed. It also has to be administered three times a day as opposed to two. Cost for a 28 day supply...$6019.69. And I thought there couldn't be a medicine more expensive than TOBI.
We are so excited about this new change to Julia’s treatments. We’ll keep you posted on how things go, but so far, we couldn’t be happier.
Olivia waiting to go on at the Festival of Trees.
This weekend was all dance. Olivia had two performances, one at the Festival of Trees and one that she shared with Julia at the South Jordan Equestrian Park. It is always so fun and rewarding for the girls to show off what they have been working on at dance. This was Julia’s first dance performance and she was excited about it up until it was time to go on stage. She was very nervous once she got out there, but she did great!
Olivia holding her cousin Ender.
Olivia loves to hold the baby. This is Olivia holding Ender after her Festival of Trees performance. If you ask Olivia what she wants to be when she grows up, she’ll tell you, ”…a mom and a dance teacher.” Ahhh, through the eyes of a child…
Dancing sisters
Pretty Julia
Julia's striking a pose in her dance costume
Julia performed a tap number. I had originally placed her in a traditional ballet class, but the teacher changed it to a tap/ballet combo class, so she gets to do both. She wore her tap shoes for three hours prior to the actual performance. She kept telling us that she had a ‘formance to do! So darling!
Julia's real potato head
I’ve realized that I haven’t mentioned how things are going in Julia’s CF world. So…since Julia’s clean-out, she’s had two pseudomonas negative culture results. The culture that came back last was kinda of the big one for me because it had been a month or so since she was blasted with the IV antibiotics and I thought it would be the most telling. Getting two negatives in a row is fantastic news. We haven’t gone two months negative for almost a year. Julia won’t have to do another round of TOBI until the day after Christmas. I’m not quite sure why she has to do TOBI again if she isn’t growing pseudomonas in her cultures. Sometimes it feels like I don’t have all the information. The big question I have is, “Can pseudomonas ever be eradicated?” My hope and dream is that it can be and that it has been in Julia.
Julia is such a trooper. She just got a new nebulizer machine this week. The old one had way too many hours clocked on it and was just tired. We rented Toy Story 3 from Red Box this past week and she loved it! We kept it for over a week and it was a treatment time favorite! We may have to make it a stocking stuffer. Julia insisted on putting her potato head parts on a real potato after being inspired by the movie.
A week late, but I need to comment on Austin’s baptism. Austin is now a big eight-year-old! He was baptized a week ago, on the day of the worst snow storm so far this season. He had many friends and lots of family brave the horrific driving conditions to come and share such a special day with him. I loved the fact that the day was just for Austin. It was a great day for him.
So, here is a video of Julia demonstrating an at home clean out. It was filmed by my seven-year-old, Austin. Hope you enjoy catching a glimpse of what living with cystic fibrosis is like.
This post comes a few day late, but we are home now! Things haven’t slowed down since coming home, so I am finding that I have time to do very little and my blog has taken a back seat to more pressing things. We came home late Monday afternoon and things seemed to be going quite smoothly…the IV medication and supplies, more treatment equipment, and a nurse had arrived to give Julia her 5:00 PM Timenten via her PICC. As I was getting out the grenade looking IV med that was supposed to be Timenten, the nurse and I discovered that the label did not say Timenten, but actually said Zosyn. I called the pharmacy right away, and after some checking, I was told that I had the wrong medicine. Timenten and Zosyn are not the same medicine, somewhat similar, but the wrong medicine none the less.
I was very stressed as her Timenten was due at 5:00 and we wouldn’t be able to get our hands on the right stuff until about 7:00. The nurse had to wait around at our house for it to finally arrive. So, Julia did finally get her Timenten, but it was around 7:30 PM when she did…two and a half hours after the scheduled time. I was very stressed about this. Hopefully we didn’t ruin any of the hard work we did for five days prior. But, now we have our Timenten and Tobramycin to put into Julia’s PICC and Joey and I do it all. We can do it on the go, anywhere, anytime, which is very nice. We can live our lives!
Julia went to preschool yesterday with her PICC and when it was time for her 12:00 Tobramycin, we just stepped out into the hall, hooked her up, and she came back to the classroom to enjoy closing circle. How cool is that? One little girl did say, “She’s very sick?” Yea…she kinda is. You can’t tell just by looking at her though…she looks perfect.
This week is very crazy! I have two presentations in both of my classes this Tuesday and papers to write, power point presentations to create…I will be very happy when it’s all over. I am lovin’ my classes, however! Love this stuff and am so glad to be getting back into it. My professors have been so great, very understanding.
Heading home!
Julia's wagon of love! Thank you all so much for your gifts...Julia used everything to occupy her time. It's hard being trapped in a hospital room.
Can't wait to get home!
Playing at the park...PICC and dance clothes. Life doesn't get any better!
Words simply cannot express our gratitude for our family and friends who have been so supportive during all of this. Our meals have been first class, so wonderful. The many visitors during Julia’s hospital stay just brightened her day…the gifts lifted her spirits. The phone calls, messages, acts of service are so appreciated and cherished. We couldn’t have a better team standing behind us waiting to cheer us on and pick us up when we need it most.
Julia is blessed with such a great team of people heading up her care. She has great doctors and medical staff that are doing all they can to keep her as healthy as possible. For this, we are very blessed.
When I get around to it, I’ll post some video of what we do to hook Julia up to her at-home IV medication. I think it’s pretty cool!
Yesterday was very difficult for Julia…even more difficult than her first day. We had a great morning! Julia’s little friend and his mom and dad came to see Julia and bring her something special. It really helps for Julia to see familiar faces here in the hospital. It really brightens her day!
The afternoon wasn’t so exciting for little Julia. Julia’s levels of medication are being tested, so that means blood draws. Being that this is Julia’s first clean-out, I was naive and assumed that once the PICC line was in, all blood draws could be taken from that. Wrong. Since the medication is being administered through the PICC, if the blood drawn from that same line was tested, the medication levels would read abnormally high. As a result, the blood must be drawn from a different part of the body. This all translates into more pokes for Julia.
She has been such a trooper with all of her pokes thus far, but yesterday she experienced a nightmare blood draw. She was getting poked in the fold of her tiny arm and things went really bad. The phlebotomist wasn’t getting it and had to dig around in her arm for a while. I had to hold Julia down while she was tortured. Julia was screaming, sweating, hysterical…all of the above. It was very heartbreaking to watch.
The rest of the the day, Julia was afraid of anyone who walked in her room. She was hiding from the nurse and when it came time for her evening treatment, she threw a huge fit, kicking, screaming, crying. It was awful to watch her loose control. She has been such a brave girl, but as events have become more unpredictable for her, her confidence is fleeting, and she is fighting to gain control of her environment. This is very difficult for me.
Much to our dismay, the medication levels aren’t right just yet, so that means two more blood draws for Julia today. We hope for more positive experiences for her.
We hope to be coming home after this weekend, probably Monday. That means that we’ll be administering IV antibiotics and carrying out four treatments each day. We feel that Julia will be more comfortable in her home environment. We feel our other children will be more relaxed with everyone under the same roof. We have had such wonderful support from our friends, family, and neighbors and couldn’t have pulled off these past few days without them. Our hearts are very touched. We are so blessed to have you all surround us at this time.
The Child Life Specialist visits Julia to attempt to repair emotional damage caused by her nightmare poke. Julia draws blood from her doll Darla.
Julia's PICC line site was cleaned yesterday, which was also hard for her. A PICC line site is typically cleaned 24 hours after the PICC has been placed to prevent infection.
This is Julia's famous first PICC. The hardest part about cleaning it is getting all the tape off. I think it kinda freaked her out to see exactly where the tube went into her arm. Such a brave little girl.