Skye is the Limit

by Kayla of Skye is the Limit.


Skye is my 19 month old beautiful baby girl. She was diagnosed with Cystic Fibrosis at a 5 days old while in the NICU after she had her first surgery a few hours old due to meconium illeus.



She had a very rough first 3 months with two surgeries on her intestines and the long, long hospital stay.

Skye had an ileostomy as well as her g-tube placed and a mucous fistula from her first surgery.
Mucous Fistula is a stoma (artificial hole) that opens into the non-functioning portion of her intestines.

During this time we were taking her ostomy output and putting it through a feed pump (just like you would with a gtube) into her mucus fistula. I would put a catheter into her MF about 7cm deep and connect that up the feeding pump. This allowed her to be able to re-absorb as many calories as possible as well as keeping the entire intestinal track working while she waited to be re-connected.

Two months later she went in for the second surgery and had those good ol' intestines put back together (they chopped out 15cm because of scarring and blockages).

While she was on TPN and Lipids through IV she managed to get Liver disease. They aren't sure if this is due to the TPN or CF. Her spleen is enlarged because of this so she is also on medication for that. We spent that Christmas in the hospital and finally went home on the 29th of December 2008.



At 6 months old she went in for another surgery following her RSV and bronchitis. She had to have a bronchoscopy done to check out her lungs and they also put a central line in for her IV antibiotics. It was then that they told me she had Tracheomalacia. We spent 2 weeks in the hospital this time for IVs to clear out her MRSA as much as possible along with the chryseobacterium she cultured.


At 19 months she started to show more respiratory issues...shortness of breath, retracting, coughing, running rose ect. She stopped eating and slept almost all day. After 3 ER visits and 3 CF clinic visits trying to get them to understand that she needed help they finally admitted her. Appologizing they didn't notice it sooner.

Skye was given another picc line, this is her 6th line. IV antibiotics were given to again minimize the MRSA that is colonized in her lungs and fight off the H flu that she cultured as well. During this months time she decided that she was done eating by mouth. She is now completely fed through her g-tube. She rarely drinks anything and will occasionally have "pleasure" foods by mouth.

After 2 weeks in the hospital she was discharged. We lost one battle, but beat another.
Until next time...





She has been a fighter this whole time, and always seems to manage to keep a smile on her face no matter what the issue is.




Skye goes through hours of treatments to clear her lungs, nebulizers, and takes over 50 pills a day to maintain her health the best she can.



SADLY, at 18 months old she was diagnosed with yet another issue with her lungs...she has ASTHMA. Honestly, I did not think that she could get asthma on top of a lung disease...but as the days go on it seems that anything is possible.

And then again, at 19 months old she started to show severe signs of allergies which would put her into an asthma attack. We live in a house with animals so Skye and I have to stay away from them so she can breathe as easy as possible. She is also on medication to help her throughout the day.




As a mother I have been through more than I ever imagined, being 20 years old...19 when she was in her surgeries and diagnosed with CF. I guess this journey has made me stronger than I ever thought I could be and I grew up a lot faster than I ever thought I would have. More battles lie ahead of us, but I know she won't give up...and neither will I.





"I can't break down for her I have to make sure that I stay strong because that's what she has done for me. She has never given me a time where she has been weak at all so I don't want to do that to her."



Love,
Skyes Mommy

Sign of the Times & RSV

Austin has chronic lung disease. Flu season and winter can be brutal for his respiratory system. But we have a secret weapon!


We have this sign on his stroller and diaper bag:

When out and about everywhere from Disneyland to doctor's offices other parents inquire where I got it from. Our sign came from the makers of Synagis (RSV medication), but you can order them here. You can also read more about RSV and who is at risk on our blog.

b and her asthma

b is a silent asthmatic, which is scary...and sometimes hard for all of us. what that means is that brooke almost never wheezes out loud, which is often an outward sign that something is going on.

brooke's birth mom is an asthmatic and asthma tends to run in families, so the doctors were on the look out early on with her. and her asthma reared it's head pretty early on...

brooke had her first asthma episode at about 12 months when she just turned blue out of nowhere in the car one day. i turned around, she wasn't talking or playing and her feet and hands and lips were blue. she had no other symptoms...other than being quiet and still, which is def not brooke.



since i had my inhaler, i tossed some albuterol in her face and made her scream to suck it in...in about 5 minutes, the color came back and she was back to normal. in the years since, we have learned that when brooke "gets tired" and lays down in the middle of normal activity, when she's been just fine and when she complains of a "tummy ache"...that is an asthma attack.

she had a silent attack at paige's softball game on monday...she laid down on the bleachers in the middle of playing with her friends and started to go to sleep. {big alarm...not brooke}
she said she didn't feel good. i asked what hurt, she said her stomach...
bells and alarms going off!!!

inhaler and air chamber in hand we did her puffs of meds and in about 15 minutes, she was back to normal. there are some things that do trigger asthma in most people, and you should go HERE to read them...

people ask all the time what asthma is...so here's a picture...and it really does the best in describing it. {if you have never had asthma, it's terrifying. you struggle for each breath and you don't feel like you will get just one more breath.}



here's some facts...bc ignorance is bliss, but knowledge is def power, and in this case, could save your life!!

according to the cdc and prevention:

• About 23 million people, including 6.8 million children, have asthma.
• Asthma is one of the most common serious chronic diseases of childhood.
• Asthma is the third-ranking cause of hospitalization among children under 15.
• An average of one out of every 10 school-aged children has asthma.

the EPA has a great site up with tons of info. you want more...go HERE and you'll get tons of knowledge.

and if you want to be involved in the national asthma awareness month events, go HERE and find out if there are any in your area, or set up an event...it tells you how!