March 1, 2014: Its been a very long time since I've had a chance to update Caley's site - mainly because I dont have a laptop while in the hospital with Caley. She was admitted yet again 2/17, where she was sent right to the PICU. She is now stable and up on the floor. Her lung function baseline has been diminshed to a mere 35%. What does this mean?? Normally it means we prepare for a lung transplant by putting Caley on the list. Not in Caley's case - she is not a candidate. The doc informed me (in front of Caley no less) that a suregery of this magnitude would surely kill her. So what are we supposed to do? Get her well just for her to turn around and land back in the hospital after a month or so. It seems as if she gets brief vacations from this ppace and then return to what seems like home (LPCH). I was broken, emotional, and now im angry and determined. We will soon have a "Care Conference" after Caley is discharged this time so that we can address every aspect of their decision. This is when we can get anygry since Caley wont be around. At the end of this conference will determine where we go from here.....wait for another hospital admission, and another, and another until she's at her last?! Travel out of the state to have another transplant team take a look at Caley's case?....How much will be shared from this hospital and how much will overshadow anything a new doc may think from here since after all we are in one of the best places for this type of surgery. I guess first things first, get her well enough to go home and take on this conference with 1 agenda.....SAVE my daughter!!!!
**I realize some of the pics are sideways but it takes so much time to update her site with this accient laptop that i am using.
December 6, 2013: Day 4 and still no word of a discharge. These admissions are becoming more frequent and are taking its toll on her and all of us. Please send posative vibes that we make it through. Being in here with Caley gives me too much time to think about whats down the road and how difficult things are for us.
December 5, 2013: Caley turns 12!!!! Yes a hospital admission birthday! We made the best of ot and the nursing staff was amazing!!!! Visitors, presents, cakes and cupcakes...oh lets not forget the greeting cards that came in that nearly crashed the hospitals system, lol.
December 2, 2013: And she is back......although being admitted is a gun sponge she is responding well to treatment and she be able to go home in a week or 2.
October 2013: Made it through the additional 4 weeks of treatment where Caley now feel healthy enough to go back to school. Needle out of her chest for the first time in 2 months!!!
September 2013: This month has proven to be the most diffuclt of them all. Cal was admitted because there seem to be a tear in her lungs and it needed to be repaired as she had been coughing up basins full of blood. Leaving the CF team unable to treat her lungs for fear of causing the tear to enlarge. Caley went down to fix the issue with a procedure that the surgeon has to inject 2-3 syringins of medicaion through her grion area, except Caley'd beeld was so severe that it took 9. Fast forward to Caley in recovery....which never seem to really happen. She quickly became worse and ended up in the PICU. Where we waited which seemed like an eternity for Caley to open her eyes. With such pain in her eyes when she did open them it was esier for her to sleep than to wake up and feel the pain. 2 weeks later she was back up on the floor slowly recovering but now out of danger. I am completely summerizing of course....Caley has had a mile of hurdles over the last few weeks. This mile stretch seems to be never ending. Just as she cleared one hurdle another seem to come along....one taller than the last. Long strides have been made with the darkest of times behind us of not knowing if she would make it we are here running along side her lifting her over one hurdle at a time. Almost 4 weeks in the hospital and she finally get to go home on continued IV treatment for another 4 weeks.....total of almost 8. let the sleep deprivation begin.
7/7/2013: She is currently on assited breathing at night by way of the BiPAP ventilator machine. She will continue with 4 breathing treatments with vest therapy and 2 IV antibiotics from home until directed by her pulmonary doctor who she will see again on the 15th where she will get repeat PFTs (lung function test). As she exited her most recent hospital admission there was no change and her lung function, it stands at a mere 39%. We will know more next week if this is her new "baseline" lung function.
6/25/2013: The latest on Caley's health, most of you know she was admitted yesterday, 6/24 due to her decline in health & weight. She is currently on a ventilator for assisted breathing. We all know how thin Caley is & how she can't afford to lose any weight but she seems to be doing just that. With infections almost ALWAYS in her lungs she uses too many calories & energy to breathe and she burns them off faster than they can be put in, even with 10 hours of overnight feeds through her Gtube. Yes, this will be something she will need to continue once she gets to go home, which we do not have an expected discharge date at this time. Last lung funtion test was 39% - repeat on Friday, we are hoping for an increase. We will have more information then.
Caley is 12 years old who lives with a rare and terminal lung disease called cystic fibrosis (commonly referred to as cf). As parents we strive to give her the best “quality of life” we possibly can but the fact is, she is deprived of hours a day and several weeks every year of being a regular child. When Caley was just 4 weeks old and admitted into the hospital for pneumonia, the doctors then discovered she had cf after performing a sweat chloride test. Since then Caley has had to sit for 3-4 breathing treatment session every day where she inhales medicated vapors through nebulizers followed by chest percussion therapy (each sitting last 45-60 minutes depending on meds). She also takes more than 40 pills a day to help control some of the complications of cystic fibrosis; pills that help her digest and break down food, control her reflux, helps with vitamin levels, controls her grass mold allergy, iron, controlling the flow of her intestines, and antibiotics that help with lung function. Through Caley’s gastrostomy tube (feeding tube) she receives more meds that help thin out mucus build up, bacterial prevention and when her weight is down 8 hour nightly feeds. What more can she deal with???...she also has a mediport where she receives IV antibiotic therapy as ordered by her doctor and has monthly flushes – that’s at least once a month being stuck with a needle in her tiny chest. Did I mention she also has cf related diabetes, yes her daily regiment also consists of painful finger pricks & a daily insulin shot. Lucile Packard Children’s Hospital at Stanford has become a second home for our family. As Caley gets older her cf progresses and her admissions at LPCH become more frequent. A lung transplant was inevitable for Caley until we were recently told that she is not a candidate at this time because she wouldn’t survive the surgery. Her lung function stands at 43% and when it drops below 40 she is in the danger of fighting for her life & without a transplant we stand to lose our little girl that we so desperately & tirelessly have tried to make her life as normal as possible.
Yes, all of this placed on a little girls’ shoulders (keep in mind this is a small part of Caley’s life we are sharing, she endures far more but then you would be reading an entire book). How does Caley handle it all…….with a SMILE!!!! Caley is the most inspirational person I’ve met and by far she is my hero. Caley once said, “God gave me cf because he knew I could handle it.” There is no truer statement then that! I live my life to see Caley’s gorgeous face light up with that everlasting smile.
Thank you & many blessings,