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The Hutson/Deleon Family |
Kamilla's Story
Kamilla had just turned 3 years old when she was diagnosed with dilated cardiomyopathy. Until then she was a healthy baby and never showed any signs that something was wrong. Right after Christmas 2023 Kamilla had gotten sick with what we thought was the flu or a stomach bug. After the second day of treating her symptoms instead of getting better she started feeling worse so we decided she needed to be seen so went to the emergency room in Sherman,Tx and told them what was going on. From there they did a xray on her abdomen and the results showed that her gallbladder was inflamed and they informed us that it would most likely need to be removed and that we had to be admitted but they didn’t have any pediatric beds available so instead of admitting us there we had to be transferred in an ambulance to Med city in Dallas. At med city they started running more tests and the doctor wanted a chest X-ray and that’s when they saw her heart and told us that it was very sick. From there they took us to children’s January 2nd around 10pm and they took her to a room in the cardiac intensive care unit and as soon as they started getting her vitals and setting everything up Kamilla began to deescalate. We hadnt even been there 10 minutes or so and the room started filling up there were doctors and nurses everywhere running around even outside her room was full. We were pulled out of the room and told that she needed to be placed on ECMO and they’d need to put her to sleep and intubate her. She was on ECMO for a week during this week we were informed that our daughter needed a new heart and until then she’d need to be on a LVAD machine. A week went by and Kamilla’s care team decided she was stable enough to have the surgery to place the ventricular assist device. The plan of care was to prepare Kamilla for the transplant surgery when that time came. So soon after we were moved to the accu and from there Kamilla started physical and occupational therapy. She worked hard every day even when she didn’t want to and she started getting her strength back more and more each day. She started eating and drinking again and talking. After a month of being in the icu we were moved up to a unit for long term care where she stayed the remainder of our time at children’s. After being there for a week Milly was already taking steps with little to no help. By the next week she was basically jogging around her unit. And as time passed she only got stronger and stronger and by the last few months leading up to the transplant news she was running and jumping around (literally lol) She’d surprise everyone how well she moved around being attached to her big machine. Milly loved taking walks around her unit everyday and made friends with everyone from doctors to patients to custodians and nurses (some that hadn’t even been assigned to care for her). She keeps everyone on their toes and bring so much light and joy to anyone she interacts with. She’d dress up and do fashion shows she’d have dance parties with karaoke (she loves Bruno Mars) we’d have play dates in the play rooms and picnics by the windows were our personal favorite. She was eventually able to go outside after 2 months on being inside the hospital and we would lay in the grass and watch the sky or blow bubbles and color with chalk. Lots of visits from big sisters and family.
May 30th 2024 Kamilla and I were in her hospital bed when the transplant coordinator woke us up with the news that they’d found a heart for Kamilla! The surgery was scheduled for the same day at 3pm but ended up being postponed until 5 due to weather (it was a rainy day) by 7pm they took her back for surgery. Kamilla was out of surgery by midnight. The surgeon left her chest open for 24 hrs and 24 hrs later she was extubated and awake. And just like before Kamilla started her therapies only this time she knew what she had to do and she did just that. She was in the icu for 5 days before being moved back up to C8 only this time without her machine! She was so happy to be able to move around without it and was back to taking her walks. Before she was never able to leave the unit without a nurse like the other kids but after her transplant she was able to go anywhere in the hospital. And in less than a month she was being discharged to go home she was so happy to tell her nurses and friends how she was going to be running playing and swimming with her sisters. Kamilla is the strongest person I know and has taught me so much about life. Shes beautiful inside and out and she is the true definition of a warrior. She has the most special soul. I hope that her story inspires and gives hope to other families going through these life changing experiences. I hope that they know they aren’t alone and there is hope.
May 30th 2024 Kamilla and I were in her hospital bed when the transplant coordinator woke us up with the news that they’d found a heart for Kamilla! The surgery was scheduled for the same day at 3pm but ended up being postponed until 5 due to weather (it was a rainy day) by 7pm they took her back for surgery. Kamilla was out of surgery by midnight. The surgeon left her chest open for 24 hrs and 24 hrs later she was extubated and awake. And just like before Kamilla started her therapies only this time she knew what she had to do and she did just that. She was in the icu for 5 days before being moved back up to C8 only this time without her machine! She was so happy to be able to move around without it and was back to taking her walks. Before she was never able to leave the unit without a nurse like the other kids but after her transplant she was able to go anywhere in the hospital. And in less than a month she was being discharged to go home she was so happy to tell her nurses and friends how she was going to be running playing and swimming with her sisters. Kamilla is the strongest person I know and has taught me so much about life. Shes beautiful inside and out and she is the true definition of a warrior. She has the most special soul. I hope that her story inspires and gives hope to other families going through these life changing experiences. I hope that they know they aren’t alone and there is hope.
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God promises to make something good out of the storms that bring devastation to your life. Part of that good is being able to give a donation to these families that are going through the struggle of having a child with Cardiomyopathy and hopefully taking some of the burden away. The Deleon Family is the Casen’s Crew 2024 recipient Family. Unfortunately we didn’t get the chance to meet this family in person this year but they were referred to us by Children’s Health in Dallas. Kamilla “Milly” just turned 4 years old August 3rd and is another sweet little girl with Cardiomyopathy that just received a heart transplant and is doing well. Her mom says that through it all Kamilla was the strongest of all of her family and never let anything slow her down. They also have two older daughters, Samiah (7) and Julianna (5) that Kamilla loves spending time with. Thanks to all the support that Casen’s Crew continues to receive, we were able to financially help this deserving family.
