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TrachKid Profile

Kenlie was born full term on Dec 18th 2008. She was a beautiful little girl who looked and acted totally "normal", that night in the nursery her sats dropped and that was the begining of a journey we had no idea we would be on.  After some testing it was determined that she had a heart problem so she was flown to Childrens Hospital in St Louis, while there we found out she has a genetic disorder called Digeorge syndrom or 22q deletion. They realized this because she had a heart condition and a cleft palate and small ears, they said that those signs together made them think she may have a genetic disorder so she was tested and the test was positive. We had never heard of Digeorge Syndrome, we were thrown lots of information in a short time and we felt like "ok, we can deal with this, some hoops to get over but we will make it". We had no idea what we were in store for.  The first time Kenlie was admitted to Childrens (after leaving the NICU) was at 2 months old for aspiration pneumonia, we spend a week there. Her second admission was for another week at 4 months old for paraflu, she was home for 3 days and started having seizures out of the blue, she was flown back to Childrens, she was intubated on May 8th, her brothers 2nd birthday, and on May 18th was extubated only to go into cardiac arrest for 23 minutes. She was reintubated and her doctors decided that she needed a trach, it was very hard to make that decision, it's a huge life change but we knew it was best for her. She came out of surgery smiling, I think she was happy she could breath! She came home June 3rd. On June 19th she had open heart surgery to do her tet repair, all went well and she was home in 5 days.  She went home on oxygen which we thought was strange because she was not on oxygen prior to surgery and the surgery should have fixed her oxygenation problems.  I remember asking if she needed to see a pulmonologist and they told me, "no, it's just going to take her awhile to recover from surgery". July 22nd 2009 she was admitted again for respitory failure, she was put on a vent and has been on one since. Through testing drs found that she hastracheomalacia and bronchiomalacia; they said it usually gets worse before it gets better and they think it got worse and she required the vent. They are hopeful that she will be able to be weaned off the vent this spring. Kenlie came home on Sept 14th with her vent, it took us awhile to find a medical supplier for her vent in our area. She is doing great, we have lots of drs appointments at Childrens but we are fine with that, as long as we don't have to stay! Kenlie turned one on Dec 18th 2009. We are so blessed and thankful to have her here with us. She has been through so much and she still has a smile on her face. She is a happy baby who loves to watch her brother and laugh at him. She is our little fighter, sometimes I think she is stronger than the rest of us. She is learning to sit up now, being in the hospital put her back a lot developmentaly and with her digeorge syndrome they told us she would be a little behind anyway.  She has come far in a short amount of time. When we left the hospital in Sept she wasn't reaching for toys or putting them to her mouth.  Now she finds anything that is in her reach, transfers things from hand to hand, and everything goes into the mouth which is good.  We are hoping that one day she will decide to swallow again so she can eat by mouth. She has a g-button now and is totally fed through it.  She had a NG from April to mid Aug and it was horrible! I had to put it in a couple times a day because she would pull it out all the time.  The g-button is wonderful! I'm a nurse so medically I think its easier for me to handle that stuff but it's always harder when it's your baby, and when the bad stuff is going on it's a little harder because you no exactly what is going on and what can happen.  We feel like we have been extremely blessed by this little girl, we love her so much and just pray she gets healthier everyday. Her big brother can't wait until she is running around playing with him and she is going to have a new brother or sister in July so we are praying all goes well with that! Kenlie has been through a lot and has a long road ahead of her but I have no doubt she will come through it with flying colors, she has a strong will and is a fighter and she has mommy, daddy, brother and new baby by her side every step of the way!

• Gender: Female
• Demographic Region: North America
• Siblings: One
• Medical Conditions: Ventilator Dependent, Tracheomalacia, Seizure disorder, nissen fundoplication, bronchomalacia, G-button, Tetralogy of Fallot, DiGeorge Syndrome
• Ethnicity: white

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2 years 4 weeks

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United States

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Missouri