Category: clinic
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.
Austin is playing baseball now...he can swing just like his dad!
Olivia riding on the tractor with dad. Our back yard is no longer a jungle!
Austin's turn...
Now Julia!
Primary Children's Hospital
Swim kids!
Ahhh, we have truly been living this past month! Lots and lots going on. We are looking forward to many adventures with the warmer weather coming our way. We hope to really enjoy lots of family time this summer!
First big change…Joey has moved his office home. He is settling in nicely and hopes to be able to get more done with less distraction. An added bonus is not having to pay office space rent and have all of the other overhead expenses that come with having a commercial office space. We are both excited about this move and look forward to this new arrangement. He has taken over the entire basement and it works out nicely since the kids and I really never go down there. Joey is also enjoying the beginning of a new softball season.
Big changes are coming for me. I have started the application process for a Masters of Education program. The plan is for me to return to school this fall, very part time, of course. I am gearing up to renew my teaching license and plan to return to the teaching profession when Julia starts first grade. By then, I will hope to have completed the Masters program and be ready to go back to the classroom. I feel it is time for a change and this will be a positive move for the entire family for many reasons I won’t bore you with.
Austin is fantastic! He is playing baseball. He is a darn good chess player. He kicks butt at math. He is growing up way too fast!
Olivia is swell! She is quite the dancer. She enjoys preschool. She can really hit a baseball, but doesn’t want to play T-ball. Her best friend is our dog Jack.
Julia is great! She just had her CF clinic appointment yesterday. Basically, she’s tall and skinny. Everything looks really good. I am dreading the culture results phone call I’ll get at the end of the week, but on the surface, she’s very healthy. I did talk to her doctor about her nasal sounding voice, and we got a prescription for some special steroid nasal drops so we’ll see if those help. I’ll keep you all posted.
Our fund raiser was very fun and we appreciate all of you wonderful volunteers and participants that came out and made the event so special. I’ll give you all a total of the money raised in a couple of weeks, but so far we’ve raised around $1000. If you want to enter our drawing this week for the $75 gift certificate to Paul Mitchell The School, click on the Great Strides donate button on the left side of my blog home page and for every $5 you donate, your name will be entered into the drawing. The School is located in the Holladay area of Salt Lake City. We hope to raise a few more dollars for the Cystic Fibrosis Foundation before May 15th, so please join us in this effort!
Goddie bags at PCMC
Julia waits for her chest x-ray
Olivia is so happy to get a goodie bag!
Dress-up time
Olivia is always willing to pose for a picture!
Today was a day of re-takes at Primary Children’s. Julia got another throat swab to see if she cultures pseudomonas again. They like to re-test her two weeks after finishing a round of TOBI to see if it grows back or not. If it comes back negative this time, we’ll surely get a break from TOBI for a while. If she comes back positive, we’ll have another round of TOBI and possibly some other oral antibiotic. We also had a re-take of her chest x-ray. This time she was crying, so hopefully they were able to see and time her inhale a bit better and get a picture when she had her lungs full. Julia cried after her throat swab and cried during and after her chest x-ray. She kept saying, “I hate it! I hate it!”
It wasn’t all bad. The girls got some awesome prize bags from the wonderful ladies at the CF clinic. Sometimes they get spoiled on our visits and this time we lucked out. The girls just loved the fun items they found in their bags!
I am going to be a crazy woman tomorrow, getting the final packing done for our big trip. We look forward to five days at Disneyland…the kids can’t wait!
Wow, so yesterday was Julia’s last day of a 28 day run of TOBI. TOBI is a difficult thing for both of us, because it adds an extra hour or more to treatment time. I am so glad that both Julia and I get an hour of our day back…for the next 28 days anyway.
On Monday Julia had her CF clinic visit. She has these every three months and will have them for the rest of her life. Julia is doing very well, but not as well as past visits. Her weight gain has drastically slowed. She fortunately did not loose any weight, but merely gained a couple of ounces. Having chronic diarrhea for the past four weeks hasn’t helped things. Yesterday was the first day that she had a half way normal looking poop. Her stool sample results showed that she no longer has c. diff., which is fantastic news. Hopefully, she’ll start packing on the pounds now that she is out of the woods on that one. It was disappointing however to get a yellow instead of a green on weight and body mass index. At least it wasn’t a red.
We are still waiting for results on Julia’s throat culture. That will tell us if she still is growing pseudomonas or not. We are all crossing our fingers that it will be negative. If it comes back positive then it will be another round of TOBI and perhaps some other oral antibiotic that may devastate her stomach. We are waiting with much anticipation for the final results.
To step back to Julia’s clinic visit for a moment…after her chest x-ray was finished, Julia and I both looked at the computer screen with the picture of her lungs on it. For the most part, Julia’s past chest x-rays looked pretty transparent. I did notice on Julia’s picture that there were some tiny white spots located close to her large airway. When the nurse called yesterday and said that there has been a change in Julia’s chest x-ray…meaning that it is different from the one they took last year at her annual visit…I knew that it must have something to do with those little white spots. We have to go in for another film to be taken because they needed a better inhale to get a good look at things. The doctor isn’t sure what it is and needs a better picture to be able to comment on things.
This is hard information to hear. It brings all of those things back that you don’t want to think about. Cystic fibrosis causes damage to the lungs, lowering lung function. That damage is permanent. Once a part of your lung is damaged you can never get that back. It is a disease that slowly takes your breath away…your life away. Of course, I always jump to worse case scenario…oh my gosh…it’s damage. We won’t know for sure until we can get a better x-ray and a better look at things. We just have to wait and see on this one.
We are so blessed to have Julia and every day we get to spend with her is a great gift. This is our normal. It’s frustrating…so much time is spent trying to slow things down…stop the clock…but in reality we are merely buying time, not actually fixing the problem. This is the reality and sometimes it’s hard to swallow.