+4 votes
Charity Kay - Charbear
Description
Charity was born 10 weeks early on February 20, 2013 weighing 4 pounds and 19 inches long and had a NICU stay of almost 2 weeks. She has her mommy and daddy, an older brother Evan who is 9 and 4 older sisters Natalie 6, Bella 5, Mercadeez 3, and Sandra 3 who all love her more then anything! When we brought her home we thought she was healthy but a few days at home I noticed she drooled very bad every time she ate so I brought her in to the doctors and they said it was nothing but the next day I had a friend who is a nurse look at her and she told me she had a sever tounge tie her was fused all the way to her bottom lip so we get her in the net day to get it clipped. Around 2 months old her left eye started swelling and draining very bad so I took her to see 3 doctors all saying it was nothing so I got another opinion yet again going with my mothers instinct instead of the doctors and found out her tear duct is sealed totally closed so we started many different kinds of medications but her body quickly built an immunity to them so we were told she would need surgery around 12 months of of age so we set it up for February 5, 2014. When she was 4 months old she got RSV and thats when everything started going down hill fast! We took her in and got the medications but she never got better only worse yet her doctor never seen the need to get her looked at by a specialist, that's when our war with the health system began. Charity would get sick all the littlest thing would go right to her lungs making her get pneumonia and her lungs to collapse. The doctors put her on an inhaled steroid and liquid steroid for her lungs but I still was bringing her in almost every week because she ether wasent getting better or was getting worse but all they would say is keep doing what your doing. After a very long 7 month battle(Charity now two weeks away from turning 1 year) I finally got the doctors to listen and send her to a pediatric pulmonologist where he found Charity's lungs were the size of a 1 year olds but her air sacks were the size of a 6 month olds and her air tubes were only the size of a 1 month old yet still no answers as to why they are like this. After getting this news we where to change her eye surgery for her tear duct for a month later so we set it up for March 5, 2014, we had to change it because her pulmonologist wanted to get a scope into her lungs to get a better look but she got sick again and we couldent get the scope into her lungs. As her surgery date got closer she was still not getting better so they made me change her surgery date again saying if we did the surgery she would have a 80% chance of dieing on the table so it is now set for April 2, 2014, but we are not thinking it will happen due to her getting very bad on March 10th, I almost lost my baby doctors said she was giving up her long hard fight for breathing but still wanted to send her home with nothing I refused to go without something I told them I will not just go home and watch my baby die so they sent her home with 2L of continuous oxygen, I thought thing would turn around finally but the net day her doctor called and said take her off the oxygen I was speechless not understanding why they wanted me to do this, did they want my baby to die??? They said take her off for two hours and bring her in, she became lifeless, she was totally white and her eyes where sunken in and very dark and was very limp like a newborn baby, I was pretty well caring my half dead baby my body went numb. When we got to her doctors I demanded her be put back on the oxygen and they finally listened after over an hour fight, Charity has since started taking small baby steps into getting better. I have high hopes for my beautiful princess and I am so glad I refused to listen to the many doctors she has seen, I know if I had I wouldent be holding her today. She still has a hard time breathing and without her eye surgery she has a very sever high chance of the infection spreading to her brain and killing her, but I will continue to fight with anyone that tries to get in our way. I feel God gave her to me to show me how strong I am and to help spread the word for all the families out there going through hard times with their loved ones medical issues. I would love if you would please help me get her story out and let families know if they feel something isent right please don't always listen to what you are told keep fighting its all worth it and I know if I haven't my Charity would not be alive lighting my every day up with her one of a kind personality and beautiful smile, also because of all her breathing issues it makes it very hard for her to gain weight and from the long term steroid use (over 8 months) she has very little muscles and it makes her very delayed as she cannot crawl stand or walk. Update as of 3/26/14 Charity will be having her eye surgery on 4/2/14 it will be a very high risk surgery because her lungs are still very weak but the infection is getting worse and the risk of it spreading to her brain is getting higher. As of 4/2/14. Charity wasent abel to get her eye surgery yet again being her lungs are still to week they may start doing testing for Chronic Lung Disease on 4/18 with her pulmonologist.
PC:FB
more on Facebook
https://www.facebook.com/Charity-Kay-Charbear-209387165931847
If you would like to mail Charity a letter, card or gift address is:
Charity Kay - Charbear
619 6th ST SE
Devils Lake, ND 58301
273 views Feb 5, 2016
anonymous
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anonymous
I am Charity's mommy a quick update on her health is she also has an undiagnosed muscle disease and an unknown stomach infection.  We are currently waiting for a way to get her a very expensive genetic test that could give us much needed answers but we are awaiting financial help from the testing place.
+1 vote
Feb 5, 2016