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Here is the latest update on Kaitlyn. She cannot see or speak and they don't know whether the tracheotomy will be permanent. I did see her smile yesterday for the first time in nearly 4 months. If all goes well with another operation this Thursday, she will be able to go home this weekend. This will just be the beginning of a very, very long journey to a limited recovery. Please keep this family in your prayers.
Sincerely,
TMD
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Dear Friends and Family - It has now been three months since Kaitlyn
first got sick and entered the hospital. We used to manage our lives
around fiscal years and quarterly objectives, now we have definitely
learned to live one day at a time and to appreciate every little thing.

Kaitlyn has improved so much in just this last week. She has gained 5.3
pounds in the last 3 weeks she has been at Valley Medical Center. We
have established a daily schedule and routine for her now. She can sit
up on the edge of the bed by herself and she dresses herself each
morning in a t-shirt, shorts, socks and shoes. The Occupational
Therapist helps her a little, but not really that much. She combs her
hair, brushes her teeth, flosses and stands at the sink to rinse. They
are really preparing her for daily living activities.

She sits in the wheelchair for 30-90 minutes 3-4 times a day now. She
protests every time we want to get her out of bed and it is a constant
negotiating game of "how long do I have to sit in the chair." Just as
soon as she is in and settled she slaps the side of the wheelchair and
mouths the words. "I want to go back to bed!" She likes to do Mad Libs
and when her Kindergarten and First grade teachers visited last week she
wrote a creative story with them. I also have been working with her on
some of her 2nd grade school work she missed. She even does spelling
and math - she says she pretends to write the numbers with her finger
and she is doing double digit addition in her head!

She is also walking now! We set daily goals for how many steps she will
take. She actually sets the goals higher then we would. She walked out
of her room and down the hall to the nurses station (about 100 feet) on
Sunday to impress her sister and her friend Lexi. She holds my hands
when she walks and it is quite a production because she has to wear a
gown and mask and is hooked up to an oxygen tank we push along side and
a portable monitor watching her oxygen saturation and heart rate levels.
Our goal is for her to be able to walk to the elevator and then just
keep on going out the front door!

We hope to bring Kaitlyn home sometime in August. I can't believe I am
actually writing these words, but it is true. On Thursday Brad and I
have a Family Care Conference with all of her various doctors and
specialists (ophthalmology, ENT, psychology, occupational therapist,
speech therapist, physical therapist, nutrition, pediatrician, sleep
disorder...) We will review her progress and set goals for bringing her
home. We most likely will have a Field Trip to our house with the
Occupational Therapist to see what type of equipment we need to
rent/purchase, and any changes we need to make in the bathroom, bedroom,
etc.

Despite all the good news we still have some yucky stuff going on.
Kaitlyn got two ear infections this last week and her right ear drum
perforated. They believe the disease affected her Eustachian tubes and
there is scarring. It seems that all the little tubes in her body have
scar tissue (urethra, airway, tear ducts, bronchial tubes ...) and are
clogged. It took a while for us to figure out an antibiotic to give her
that we felt safe with. Basically almost all antibiotics and sulfur
drugs have been known to cause Stevens Johnson Syndrome and we don't
want to take any chances.

She also still has the MRSA staph bacteria in her trach and nose. This
is such a bummer for us! She had one test that came back negative and
then the Infectious Disease department required a second test and it
came back positive. So she is still in isolation, we have to wear gowns
and gloves and she can't use any of the public area such as the
children's recreation room, equipment room, ect. They are not actively
treating this bacteria and once she comes home it won't be an issue. It
is only an issue in the hospital. We probably all have this type of
bacteria in our bodies and it doesn't make us sick, but if it got to
someone who was already sick then that would be bad.

Her eyes are starting to heal, but she still keeps them shut 24 hours a
day and can't see. Yesterday they had to pull 10 or so eyelashes from
her bottom lids that had grown in backwards and were poking her. This
is a known side effect of Stevens Johnson's Syndrome and many people
have to have their eyelashes permanently removed... They have started
her on steroid drops to try and reduce the inflammation. It is just a
waiting game to see if she will have vision and we are in many
discussions for how to go forward teaching Kaitlyn as a potentially
visually impaired child. We hope that eventually her eyesight will
improve or can be helped through surgeries, but it will be quite
sometime. I have contacted many ocular specialists around the country
via e-mail and have heard back from them saying we are doing the right
thing being conservative. They all believe our Ophthalmologist Dr.
Elliason is very qualified. They all say the same thing, we just have
to wait until everything has healed.

No news on her airway obstruction or trach. She still requires 30%
oxygen to breathe and we still suction her trach quite often. She still
wears the Pneumo Vest three times a day and gets a steroid lung
treatment called Pulmocort once a day. The ENT Surgeon plans to see her
next on July 19.

Kaitlyn is having surgery tomorrow. We are having a gastric tube placed
in her stomach as a more permanent feeding solution. They will remove
the NG tube from her nose. The surgery will be performed in ICU and she
might be there for the next couple of days. It can be a tricky surgery
with risks of perforated bowels, but we feel it will be fine and that it
is the best long term solution for her at this point.

We held a Prayer Circle on Sunday with about 15 people at our house and
many, many more around the country all praying for Kaitlyn's healing. I
can't tell you that a miracle occurred and that she was instantly
healed, but we definitely felt a sense of love and power vibrating from
the room. Brad tells me that God doesn't work on my timetable so I
can't just pencil in "eyes to be healed next week" in my Palm Pilot...
Please continue with your prayers and especially tomorrow morning for
Kaitlyn's surgery.

Last, but not least I leave you with a picture of Kaitlyn taken
yesterday when our dog Maddie came to visit at the hospital. We have
been hesitant to send any photos out during the course of this horrible
disease, but now she is starting to look like our beautiful Kaitlyn
again and we want you to share in our joy.

Love Brad and Kerry