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Jenny's third "Tune up" in March 2008. To watch the slideshow =
CLICK HERE = PHOTOSHOW about Jenny's "Tune up"
INFO JENNY 05-05-2008
CF
Clinic: The IV antibiotics therapy in March did not help very much and Jenny still suffers of a bad cough. Now they will try
to improve Jenny's health by using a continuous low dose of antibiotics.
Since Jenny was not able to get rid of an infection she had to undergo “Infusion
Therapy” at the hospital. There she underwent, once again, a small operation to put a port through a vein to her heart.
Everything
has gone well so far. Jenny is on three different antibiotics (Cefepime, Tobramyzin, and the strongest of all antibiotics
= Vancomycin).
After ten hours we were able to leave the hospital with an exhausted Jenny and two large boxes of medications.
We
are glad, that we’re able to do the infusion therapy at home…~ even if we have to change, flush, etc. the infusion
every four hours (day and night). Also
we still have to do the regular therapy ("The Vest", inhaling and all the medications)
It’s not easy…but it
hasn’t really been easy for the past six years, since we found out Jenny has Cystic Fibrosis…
INFO JENNY 10-06-2007
Jenny's first balloon flight at the Balloon Fiesta in Albquerque/New Mexico in the "World
biggest flying pig"
Thank you so much to Kathie and Doug for making this wonderful flight possible.
Jenny had such a great, great time.
INFO JENNY 10-01-2007
Jenny had her anual checkup at the UNM hospital. Fortunately, the doctors didn't detect any worsening in Jenny's organ functions.
The only problem were her 'rolling' veins for the blood samples.
Unfortunately they couldn't draw enough blood for all the tests, so when her bruises
disappear we will have to return in about two weeks to try again.
Meanwhile Jenny reached 116cm and weighs 22kg. Despite the fact that Jenny isn't
eating well the doctors are satisfied with her current condition.
INFO JENNY November 2006
Jenny's wish "Going on a Disney Cruise" will was fulfilled
in November 2006. Thank you so much so much for making this dream possible. Thank you to "The Make a Wish Foundation New Mexico"
and "The Challenge" in Albuquerque/New Mexico. Jenny had the BEST TIME ever !!!
INFO JENNY 09-25-2006
Today we had an appointment at the University of New Mexico with Jenny again.
They did a liver ultrasound, a throat culture, x-rayed the lungs, and measured lung volume. Taking blood did not go so easy
and unfortunately with lots of tears. At the end Jenny stated, crying, "I don't want to have CF anymore."
The lab results were better than expected.
Fortunately, Jenny's lungs did not get any worse.
INFO JENNY March 2006
We had our first appointment with Jenny at the Lucille Packard Childrens Hospital at Stanford
University in Palo Alto with Prof. Dr. Kenneth Cox.
The good news is, that Jenny does not have to be listed for a liver transplant right away, because
her liver is still functioning. The progression of the Liver Cirrhosis is not stopable. Her spleen is significantly
enlarged, due to the fact, that her liver is not working properly.
The bad news was: If Jenny catches another "but" (especially the "Aspergillus") a transplant is out of
discussion, because Jenny is already MRSA and Pseudomonas positive, which would lead to uncontrollable infections after a
transplant.
We can only hope and pray that the progression of her Liver Cirrhosis is slow.
This whole situation is very hard for
us to handle.
Jenny on the new flyer of the "Alliance For Stem Cell Research"
INFO JENNY 10-10-2005
On monday the 10th of October, Jenny's liver biopsy took place at our Clinic in
Albuquerque.
Our nerves and fear were running high, anticipating the results of it and taking
into account all the risk factors of a liver biopsy.
The results were = devistating !!! Jenny has liver cirrhosis
!!!
The doctor couldn't even get a proper sample of the liver due to the pieces crumbling
apart.
We could barly calm our nerves and we shed, what seemed like, unending tears.
We've been fighting every day to keep Jenny's lungs as healthy as possible, and
now it's her liver that will be failing in the near future.
The doctor expressed that from what he has experienced, Jenny could live about
3 more years with her liver (give or take several years).
New Mexico does not carry out any transplantations. I would have to take Jenny
to Stanford (San Francisco). A liver transplant in a young child with Cystic Fibrosis, severe lung damage, and MRSA is
extremely rare. Along with everything else (told us our CF doctor) Jenny will also need a lung transplant in about 6 to 8
years. We had hoped to get a lung and liver transplant together in several years, but right now her liver is damaged much
more than her lungs.
Right now we have no direction of what to do.
It's impossible for us to think in the 'norm' right now, due to the imense shock
of the results, which we have yet to overcome.
At the moment everything seems hopeless to us. We enjoy every second we spend
with our angel and admire the strength, bravery, and live-happy attitude she displays during her hospital stays, operations,
pain she has to endure...etc.
| after Jenny's liver biopsy |
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Since Saturday Sept. 24th we are back from UNM Childrens Hospital in Albuquerque.
It were again 5 sleepless days and nights in the hospital with tests around the clock. During a “small” 2 ½ hour –
procedur, Jenny got a Picc – Line in her heart artery , to avoid permanent ‘poking’ her during the
IV – therapy. It took so long because it took several try’s to get it working properly.
Unfortunately, not only her lungs are damaged but, also her liver !!!!
On October 10th they will do a liver biopsy, to determine if it is liver cirrhosis. Chances
are 50/50.
They mentioned that we should consider putting Jenny on a transplant list, if the outcome is negative,
which was of course a big shock for us !!!
So, we are hoping, that the results are “only” fat, which would also cause an enlarged
liver.
Her spleen is also enlarged.
Jenny’s lungs are heavy damaged due to mucus plug up. We will try to improve this with even
more intensified daily therapy.
We are continuing the IV – therapy right now at home.
Jenny is on 3 different Antibiotics (Vancomycin, Tobi, Cefepime) now, which are given in a 6 hour rhythm,
day and night.
Despite all the negative results, we admire Jenny, because of her restless energy and happiness.
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