Sunday, March 23, 2014

What is Kayli's prognosis?

What is Kayli's prognosis?

It is a question asked of me time and time again, because Kayli has a diagnosis of Trisomy 18 (a diagnosis that carries a less than 10% chance of surviving to the age of 1). I'm sure the intent of the question (in most cases) is not malicious, but one that is asked with anticipated dread and a nervous tone. My quick reply is, "Kayli has outlived her prognosis". That usually is not a sufficient answer to quench the desire to know more about Kayli's iminent demise hanging over her head. The push for a more definitive answer leads me to respond with educated statements, with hope to connect the inquiring mind with God and Kayli's intent here on Earth with us:

First, I reflect on the definition of Prognosis: A forecast of probable outcome.

My extended response to questions of Kayli's prognosis, is that she will live long enough to strengthen your faith, to share hope with you, to educate you, and to connect you with your spiritual being. Kayli's prognosis of life next to yours, is determined on your understanding and acceptance of her abilities as well as her challenges. Kayli's prognosis in life on Earth is not limited to a determined life expectancy because she is unique and nobody has been granted the identical extraordinary life she has been granted. The prognosis of her body is the same as your bodily prognosis, there is no way to determine what tomorrow holds, only the desire to make the best of the days we have been given. She may live through the day, or she may live through 100,000 more days. Her body is a wonderfully and fearfully made creation, a one of a kind miracle by God just as yours is. Kayli's medical prognosis is somewhat dependent on the gifts God has granted the doctors, nurses, and medical professionals crossing her path, and what THEY choose to do with their gifts. One may say her medical prognosis is dependent on the care that is offered and provided to her. I guess in short, my answer to your question of Kayli's prognosis , or "forecast of probable outcome" is that she will have a qualitative life of profound inspiration to those who have the honor of connecting with her. Which brings me back to my short answer....Kayli has outlived her prognosis. She has exceedingly reached far and wide to connect with others, inspired many to share her faith and love for God and His son, and she has outlived the understated forecast of probable outcome set by many medical professionals.... I pray that my prognosis is as bright and as inspiring as hers is! 

Wednesday, March 12, 2014

A medical room, fit for a princess

There are many things to consider when organizing your medical supplies in your household.  Space and financial resources can be limited, even while the need to have access all supplies and equipment are prevalent.  We have our house organized by necessities, body system supplies, accessibility.
The shelving unit that we built, sits on Kayli's dresser. 

The most used supplies are stocked in our daughter's room.  We built a shelving unit, bought shelving, and used things around the house to accommodate our organizing needs.

Inside the shelving unit, are the following organized bins, ready for easy access to medical supplies used daily....

Inside a pull a smaller pull out drawer, we hold her tape, thermometers, scissors, lip gloss, eye lube, tape measures, and creams

Another small pull out drawer

In this general supply drawer, we hold the trach ties, alcohol wipes, 3 different size/types of gauze, and surgi lube.  They are in a tub from another organizing system once in our basement. 

In this pull out bin, we store the posey wraps, pulse ox sensors, and Gtube button hole covers
In this GI bin, we store 2 Mic Key buttons, and a month supply of daily extensions

Then nurses' blank paperwork is stored in the bin, and their notes, etc are filed in the binder
The spare parts for the respiratory equipment is stored in here
The respiratory supplies, and the book of CD's for Kayli's music player
Even a space for books!
Storage bags for hearing aids, FM system, and cleaning supplies

The nurses station in Kayli's room 
The flower box holds lotions, dry erase markers, and the flowers in
the vase have pens attached to them, so the nurses don't accidentally
walk off with them. 
We use a dry erase board for quick information such as address (in case of emergency), family cell numbers, last trach
change, last gtube change, notice of new medications, etc.  


Kayli's Hospital Bed: Made by Beds by George, it is the Dreams Series, size twin.  It is made of 100% Mahogany with a dark stain.  The bed has an electric lift, head raise, and foot raise.  We opted for windows all around, and a hole in each corner of the bed, for easy Fisher Paykel tubing to fit through when the sides are up.
 The headboard is engraved with "Jesus Loves Me".  The bed is on lockable wheels for easy movement.  We ordered the attached IV pole.  The mattress was included, and is water resistant and comfortable for her spine.  We added an egg crate mattress as well.
This is Kayli's bed with an added canopy, to add to her princess room! We hang baby links with toys to her canopy frame.  The canopy was a great $10 garage sale find, that we suspend from the ceiling, so it doesn't affect the hospital bed warranty.  The drapes were included, and we are using them as the front post material.  The back posts are made with the material from the flat bed sheet! We also have rope light suspended with the inside frame of the canopy, to give a wonderful visual affect, that acts as a night light and visual stimulation as well!

Glove box holder and a basket to hold diapers and wipes. Kayli's super cape is in the picture also, hanging from her bed post. 

Immediately next to Kayli's bed, is a towel rack that supports the Kangaroo Joey feeding pump, and Fisher Paykel system.  It is suspended high enough to clear the raising bed side, and the sterile water bag and feeding bad that is suspended from the attached bed IV pole.

The IV pole is hidden behind the canopy post

Next to Kayli's bed, we have an IKEA Lack Wall Shelf unit.  It holds her Suction machine, catheters, pulse ox, and princess decorations.  The portable suction machine fits neatly underneath!

On the shelf, we have a command hook to hold the suction tubing when not in use.
Since we sleep on a different floor level than Kayli does, we have a wireless doorbell in her room.  The wireless doorbell is easy to install, with a command strip. It is installed on the ledge of  the IKEA shelving unit, so it doesn't take up valuable space.  The nurses can ring the doorbell, and it will chime in our room.

We have a flower box under the other window in Kayli's room, to hold her emergency medications, eyeglasses, and hearing aid.

And a bag holder to collect shopping bags, for the bathroom garbage can.

Kayli has a jewelry station in her room.  The backdrop of the jewelry station is fabric that was placed on the wall with spray starch.  It is an easy on/off and doesn't damage the wall! 

Kayli also has shelves in her room, for pictures of the places she's been and all her awards. In her closet, she has hooks below her clothes, for her coats (a space saver). 


Kayli's bathroom is small, so we have to be organized.

Her soft hairbands are on a jewelry bracelet holder, and the harder ones are in a vase

Her hairbows are on a tutu that hangs on the side of her shelving unit, next to the bathroom. (front side of tutu)

(back side of tutu)


Kayli has a home made nail polish holder (made with a cultery holder, wire hangers, and some spray paint).

She has a towel holder for a hand towel, paper towels, and drying washclothes.

We use a pull out drawer under her window in the bathroom, for her shampoos, etc.

Kayli's therapy room

Across the hall from Kayli's bedroom, is her therapy room.  It was a bedroom, that we turned into a supply and therapy room.  While Kayli's bedroom has stock of frequently uses medical supplies, we had to find a place to store her extra supplies, and less frequently used medical supplies. We put shelving units in the room's double wide closet.  

We have an armoire in the therapy room, to store her drool pads, blankets, and mattress pads. We decorated the front of the armoire with pictures by taking cork board and covering it with fabric.  Kayli can see her support team, and her nurses can put faces to all the specialists, nurses, and dr's on Kayli's team!

Kayli's exercise ball is set aside, resting on a re-purposed basketball hoop.  We hang her baby link toys on the basketball hoop, for easy access and sight.  The peanut ball (top left) will have a smaller basketball hoop of it's own. 

We built a shelving unit around her switches, sensory toys, and light box dimensions.  Above this, we mounted a large screen tv, and a shelf that holds a DVD player, and a VHS player.

And found a (free) tall shelving unit to store Kayli's musical/auditory assitive technology


We keep syringes, medicine cups, formula containers, etc in these bins to dry and store.  This is in the kitchen at "Kayli's counter". 

Above "Kayli's counter" in the kitchen, is her cabinet.  We store her medications, formula, etc up here, with the daily medications in the pull out white bin (with handle).  We made cheat sheets of medications/times on index cards, and put cork board on the inside door to post them for quick access. 

We also have shelving units in the garage, where we store the bigger boxes of supplies.  We take from the larger garage stock, to fill the indoor storage bins for every day, accessible use.  

Saturday, March 8, 2014

Trisomy Awareness, looking beyond a diagnosis

Trisomy can be a devastating diagnosis, especially when your loved one is first diagnosed. We, as Kayli's parents, worried that we did something to cause Trisomy. We were swiftly assured that we played no active part in causing the Trisomy diagnosis. In rare cases, a parent can be a carrier of Trisomy, and not even know it, but in most cases Trisomy happens as a "fluke" during conception. When the cells divide, they are unevenly divided, and an extra chromosome (partial or full) is formed. (This is why we like to say "Trisomy: when Extraordinary starts at conception".  ) Then when the cells duplicate, they carry that uneven division throughout. The type of Trisomy depends on when the division/duplication happens. If a cell is unevenly divided/duplicated in the first 32 cell divisions, it is likely that the Trisomy will be a full Trisomy. If the uneven division/duplication is later in the process, then the baby is likely to have mosaic (not all the cells in the body will be affected). If a portion of a chromosome is duplicated in the division, the Trisomy is partial (a portion of a third chromosome is formed and duplicated throughout the cells). While there is a great variety and spectrum of Trisomy diagnosis' (Trisomy 1- Trisomy 23, Full, Mosaic, Partial, Translocation, Balanced Translocation, Ring, and many combinations within those diagnosis'), it is important to remember that each person is unique in their own rare diagnosis. No person will be exactly the same, so it is unrealistic to categorize any person under one prognosis based on a diagnosis or statistic, alone. It is vital that the new parents have support while processing the new diagnosis with reportedly grim statistics (that are outdated and questionably accurate in my opinion), and grieving their idea of a perfect child. As the family learns the new challenge of being a parent of a child who will most likely to have special needs, and revise their idea of a "perfect" child, they will also need to be reminded that their child is not a diagnosis, but he/she is still THEIR CHILD. They will not love their child any less, nor should you (as a friend, family member, coworker, etc). There is no manual for the parents, and the baby will not know of the statistics. There is no way of knowing, with great accuracy, what challenges their baby will have. One of the best ways to support the family, is to respect their journey but not fear it, encourage them to get to know their baby (in the womb, stillborn, or alive). No soul is ever wasted, and only a body is to be mourned. If we, or others around us (professionals, friends, or family) find ourselves lost in Kayli's diagnosis, we go back to the list of WHO Kayli is, which pulls us away from the dark depths of the diagnosis she HAS. We strive to stay one step ahead of Kayli, but recognize that only she and God knows of her great plans in life, no matter how long or short it is to be. We share with you, a capture of Kayli, beyond her diagnosis....

All about Kayli, looking beyond her trisomy diagnosis

Nickname~ Sweet Pea, Princess, Ms Thang
Song~ This Little Light of Mine
Birthstone~ diamond
Birth flower~ Sweet Pea
Birth order~ youngest
Symbol~ heart shape
View~ my way or no way at all
Motto~ With God, all things are possible

Color~ Purple
Animal~ Jelly Fish
Place to visit~ Aquarium
Mentor~ God
Stuffed Animal~ Eeyore
Music~ Lullabys
Bedtime routine~ Mobile and/or Projector
Therapy~ sit to stander
Jewelry~ earrings
Pastime~ swimming/bathtime, watching jellyfish in LED lighting, or sitting in the tunnel of fish at the aquarium

Milestones since the 32 minutes of anoxia (lack of oxygen)
Potty training (for a couple of months)
Using switches (toys)
Pulling self up
Can sign "more" and "all done" in her own way
Knowing her surroundings and people in her life
Eye tracking
kicking/pushing away with hands if upset

Bucket List Achievements
Was in the Ocean
Rode a pony
Saw Fireworks
Traveled the country in an RV
Rode on an amusement park ride (two)
Was in a parade
Gave something of herself, freely
Received mail
Sent mail
Sat on Santa's lap
Went to a pumpkin farm
Has a personally decorated bedroom
Has been tickled
Fell asleep in Mommy's and Daddy's arms
Petted an animal (goat, dog, and ferret)
Dressed up for Halloween (Dorthy from Wizard of Oz, Wonderwoman, and )
Smelled a flower
Got raspberries on her tummy
Felt rain on her face
Laid on Mommy's (and Daddy's) chest
Caught bubbles
Played dress up/dressed up
Walked in God's beauty
Watched fish swim
Swung on a swing
Saw flowers bloom
Watched a parade
Played in a pool
Went to a sporting event (was a part of the crowd)
Hung decorations up on a Christmas tree
Went to a drive in theater
Watched a bonfire
Had a birthday party
Colored in a coloring book
Found Easter eggs
Went to a zoo
Wished upon a star
Was kissed on the forehead
Held hands
Made a snow angel
Feels unconditional love
Saw a rainbow
Went to a car show
Heard a live band
Traveled outside her homestate
Floated in a lazy river
Finger painted
Sat inside a petting Zoo (and a goat ate her hearing aid!)

Interesting Facts about Kayli
1. Kayli helped set up a new policy at her school, making it possible for kiddos with trachs to swim in the school's pool!  She was the first kiddo with a trach to ever go in her school's pool!

2. Kayli donated 14" of her hair in December of 2012.  She was the youngest person to ever donate to Wigs for Kids, and with the most amount of hair!

3. Kayli is a very spiritual girl, and has been known to leave her body and visit others.

4. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).

5. Kayli loves to swim, and especially getting her hair wet!

6. Kayli has had 18 surgeries throughout her life, including heart, spine, and abdominal.  Her family has had more than 60 surgeries, and Kayli does not yet "hold the record" for the most surgeries in the family.

7. Kayli has met many others with her same "rare" trisomy diagnosis.

8. Kayli goes to school.  She LOVES school!

9. Kayli's clothes size is age appropriate, but her shoe size is still only 6-12 months!

10. Kayli is the youngest of 7 (including half siblings).

11.  When Kayli was born, she could eat orally, and was fed breast milk for the first 9 months of her life.

12. Kayli's life challenges are directly related to the 32 minutes without oxygen, and have minimal (if anything) to do with Trisomy 18 diagnosis.

13. Kayli's ears were pierced for her first birthday.

14. Kayli has visited 10 states in the USA

15. Kayli wears lipgloss regularly (she has many different flavors to choose from!)

16. Kayli teethed in a typical manner, and she has a full mouth of teeth, but her upper teeth are covered with an overgrowth of gums, caused by a seizure medication.  She will be getting her gums lazored back because the gum overgrowth is causing her jaw to grow upwards instead of out.

17. Kayli had a cleft palate, that closed on it's own and she is allergic to the antihistamine, Zantac (both unheard of, but unique to Kayli)!

18. Kayli does not like the sun, and sneezes every time her eyes are exposed to the sun.

19. Kayli does not like the cracks in the side walk, nor strolling on bricks or any gaps in solid ground.

20. Kayli collects piggy banks and hair bows.

21. Kayli has photo frames and earrings from each monumental place she has visited. The photo frames are placed on shelves in her room, as reminders of family times well spent.