Category: TOBI
This weekend we took the RV up the mountain to Rockport for a little fishing and some r&r. We left Friday evening and I ran around, frantically trying to get everything packed up. I did have to run by the pharmacy that day to fill some prescriptions for Julia. I picked up the dreaded TOBI, along with three others, and when I walked out the door, tears welled up in my eyes and I quickly pushed them back. I’m sure as time goes by I won’t have this reaction to coming in contact with TOBI, but filling it means Julia and I devote another hour of our day to fighting cystic fibrosis. It makes for very long treatments and very long days. I wore my FUCF tank-top for the occasion, because darn it, sometimes that’s just how I feel. What I would give to come home after a long day and just put my kids right to bed. What a treat that would be…
My new favorite tank-top
Are we done yet? No we still have another 30 minutes of TOBI!
OK, I done complaining now…on to our fantastic weekend. We got up to the lake late Friday evening and the kids tried some fishing and then rode their bikes. They liked riding around on the paved campground roads. On Saturday, the kids fished, swam in the lake, dug in the sand, and rode their bikes. Sunday was a highlight because we rented a boat and took it out on the lake for a couple of hours. It was a blast!
My parents were with us and so was my brother Dustin. Now the tricky part was getting Dustin to board the boat. You see, for those of you who don’t know Dustin, he has Down’s Syndrome and, in his day has watched way too many Jaws movies. So, he is deathly afraid of large bodies of water because he believes that there are sharks swimming around, ready to attack. My parents can tell you a hilarious story of Dustin on a cruise ship during the “drill.” You know, the one when you all have to put on your life jackets and go out on deck to your muster station. Yeah, that’s the one. Well, lets just say that all the people at my parent’s muster station got a good show of my dad pulling Dustin out on to the deck. Dustin is not a kid anymore, well, not physically anyway. He’s almost my age, so good entertainment for all.
Well, Dustin wasn’t about to get on the boat with us at Rockport, but my Dad was trying anyway. This nice man came up and offered to help. Joey told him that Dustin thought there were sharks out in the lake and the man explained to him that there weren’t any sharks and offered to walk with Dustin and help him aboard. Surprisingly, Dustin trusted this man and held his hand and walked out onto the deck and climbed aboard! He held on tight to the side of the boat the entire time and had a death grip on the tie off rope, but he did enjoy himself, especially when Joey opened it up and went really fast. You could see a look of enjoyment come over his face. My dad did try to get him to fish, but he refused, holding tight onto his rope and the side of the boat, not even considering letting go of either to hold a fishing pole.
See, he is enjoying himself...uh oh, is that a shark I see! Notice Dustin's hand...holding tightly onto the side!
We came home Sunday evening, totally exhausted. We got the RV all cleaned up and ready for next time. We are making some good memories with our kids in this RV. So the tradition continues. Next stop…Yellowstone!
Austin attempting to catch a fish...sadly, no luck again this time.
The captin at the helm...
Julia, enjoying her boating experience.
Olivia, as happy as can be!
My kids and my mom
The kids loved playing in the water and digging in the sand.
Mascot Mania!
Ladybug Julia
Ladybug Olivia
Snake boy Austin
We were given some special tickets by Primary Children’s Hospital to attend a night out at Hogle Zoo. It was perfect weather for the event…overcast and cool t-shirt weather. We had dinner provided by Chick-fil-a, face painting, pictures with various animal mascots, and lots of fun. To Julia, it was like going to the zoo for the first time, because she can’t remember the times we’ve been there before. She had a blast seeing all the different animals. The kids all loved their face paintings and Olivia wore hers for two days afterward. She was disappointed when I had her wash it off for church.
School is finally out. The kids start gymnastics today! They are all so excited. We are camping this weekend with friends and can’t wait to catch lots of fish. Our yard is just about finished as sod is going in the back today. I’ll post some before and after shots in a day or so. I hope to be able to slow down a little bit this summer.
Julia has had good health. She is three days out from finishing another round of TOBI. I will be so glad to get a 28 day break from it and I know she will be as well. She has been on a nasal-steroid spray, which seems to be helping some nasal congestion she’s had lately. I can hear CF in her more and more each day. She now has a cough that appears randomly during the day, and has coughing spells during treatment time. It’s a change from when she was younger and I never heard her cough, ever. This disease slowly does it’s thing. Julia is such a trooper and she is truly an amazing little person.
Pseudomonas...or pickles as Julia would say.
Julia on a shopping trip with Mom and Olivia.
Shop 'til we drop!
Jazz/Lakers game...ear protection a must!
Jazz game fun...what did you say?
Yesterday I celebrated another birthday! My kids get really excited about my birthday, me…not so much. I got some presents for my birthday, some wanted, some unwanted. The day before my birthday, I got the call. Yes, the call that I had been dreading for over a week finally came. I wish I could report negative, happy test results to you all. I’m sorry to say that we got another positive, and I don’t mean positive in a good way.
Yes, pseudomonas has reared it’s ugly head once again. For those who don’t know, pseudomonas is not a good bacteria to have in your lungs if you are a CF patient. It’s causes lung damage and lowers lung function. This time it’s a bit different. Julia’s doctor is treating her for an indefinite period of time. This means she’ll be on TOBI, on 28 days, off 28 days for six months, a year, possibly forever. To me this means that all hopes of irradiating this bug from her lungs are lost. Julia will probably always have pseudomonas.
There are some positive things. She doesn’t have cepacia or MRSA which are much worse. Psuedomonas is manageable with inhaled antibiotics like TOBI and there are some new medicines out on the market that can treat it as well. The negative is that TOBI adds an hour a day to Julia’s treatments. At this point, the TOBI will just keep pseudomonas at bay, beating it down, but never freeing Julia from it. If the levels of pseudomonas get to high, she’ll be admitted to the hospital for a “clean-out.” I don’t see us going there for quite a while as we are very religious with Julia’s treatments at home and I feel we’ll give pseudomonas a good run for it’s money. Hopefully Julia will never have to know what a “clean-out” is.
So this is my unsolicited birthday present. I did get some other presents that brought a smile to my face…dinner with my many family members, a chocolate pie and a cheese cake, cards, money, lots of love, many facebook warm wishes, and best of all an ipod touch, which is on its way! I look forward to hitting the streets with some tunes and best of all apps to organize my life! Of course the best gift of all is my wonderful family, my husband, my kids…they keep me going, keep me busy.
I’m almost done with my application process to Westminster College. I should have everything sent off by the end of the week, then we wait. I look forward to being a student once again.
School is almost out! The kids will be in gymnastics for the summer and they are all sooo excited about this. This summer we hope to camp, fix up our yard, go on many field trips, and of course, visit the Murray pool on a regular basis. Yellowstone will be our big summer end trip and we are so excited for that as well. Summer can’t get here soon enough!
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.
Today is kinda of a lazy day. I have the girls home this morning and they are playing. Olivia spent an hour setting up a tea party while Julia was getting her longer than usual treatment, and Julia couldn’t wait to go and play. We all sat down together, sipping our imaginary tea, nibbling on our plastic food. Olivia had set out a salt shaker, especially for Julia. She told Julia that is was for her because she needed it. “I don’t need it and Mom doesn’t need it, but you need it because you have ’sickstick fibrosis,’” she said. I couldn’t help but smile. Olivia is going to grow up to be such a great mother someday. She’s always taking care of Julia, looking out for her, and looking after her. I always know when Julia is up to no good, because Olivia is sure to inform me of it.
Julia is good at fooling everyone. She appears to be just an average, healthy two-year-old. She still has a nasty bacteria residing in her lungs-pseudomonas. She started her second round of TOBI this week, but in addition to the TOBI, she also started an oral antibiotic-Cipro. After reading all of the literature on Cipro, I’m under the impression that this is one powerful antibiotic. It was almost scary reading the possible side effects and the “don’t use if’s.”
The Cipro is a 14 day run and Julia has developed some nasty diarrhea as a result. It just pours out of her like water. I feel very lucky to have made it through yesterday without a yucky mess, because, she is now diaper free, so the potential for a disaster is very likely. We stopped to poop at just about every toilet. She pooped several times at home…she pooped at Gymboree…she pooped at Einstein’s Bagels…and I had to pull out of the preschool pick-up line and rush into the school to let her poop yet again. I am fully anticipating another round of C. diff. after this, but we’ll just have to wait and see.
I sure hope that this time we kick this one. Treatments are very long, and it’s a lot to ask of a two-year-old. Julia is amazing and I really don’t know how we get through it, but we do.