Dillon's Story
I wanted to share a little bit of Dillons story. Some of you have been here since the beginning and some haven't so here is a recap.
On Sept 25 1993 we thought we would be bringing home a healthy baby boy. Our path changed quickly, to our complete surprise our little Dillon was born with Spina Bifida. As soon as I had him he was rushed to Riley Children's Hospital and I was given a Polaroid picture of him. Anthony and my dad went to Indianapolis to be with Dillon and my mom stayed with me. Later that evening I was released because I had to go sign consent for Dillon's 1st surgery. We were told he probably wouldn't make it But he did. 💙 4 days later he developed hydrocephalus and needed a VP shunt to relieve the pressure on his brain. We were told he probably wouldn't make it But he did ❤️.
DILLON lived 29 years having 54 surgeries and 39 septic infections. He was born with a heart of a warrior. He fought every battle with Grace. He walked until he was 15, he tired easily but he pushed on. At 15 he developed a tethered spinal cord from scar tissue from a previous back surgery. The surgery went well but the healing did not. The incision was pulled apart and had to heal from the inside out with multiple wet-to-dry dressing changes multiple times a day. This took 7 months to heal, in the meanwhile he lost the ability to walk. That didn't slow him down. He crawled and he crawled fast lol. We kept his wheelchair in the garage and when he wanted to go visit my mom and dad's or my sister's house he crawled to the wheelchair and off he went. At 21 he developed scoliosis and another tethered cord. He needed reconstructive surgery on his chest so his heart and lungs could function properly and a Tether cord release. Dr team of Dr's at Riley decided to do both surgeries at the same time. The surgery went well and quicker than we were expecting. But 2 days after surgery he went into septic shock. He was sicker than he had ever been. We spent several weeks in the hospital until he was well enough to go home. Fighting the infection and healing from the surgery took its tole on him. He lost the ability to sit independently and crawl. The years went on and the rest of his life was an uphill battle. He never complained. He was so limited and he had lost so much. We were devastated but he was just so glad to live ❤️
The infections came stronger and more frequent. He developed antibiotic resistance, he ran out of veins and needed a Power Port. He spent the last 3 years of his life fighting infections with too many hospitalizations to count and most of his time at home was on IV antibiotics. We had to learn how to administer them because there was little to no home health care available in our area.
We became Pros at setting up temporary hospital rooms. Feeding pumps, tubes, oxygen, ventilators, ICU monitors, IVs along with many medical supplies and medications. We NEVER allowed Dillon's illness to define him. It was a 2nd in his life. We took him riding UTV, camping and on vacations. Even when he was hooked up to the ventilator full time because of Co2 build-up. We took him as often as we could. It took a village to make this happen and we have just that, people that step up, people that care and People that were willing to help us help him ❤️🤍💙. There are no words to express what that meant to him and us.
Our lives are forever changed without Dillon 💔 we are trying to go on but it is really a struggle. We created this non-profit organization in memory of Dillon because we want to help kids in his honor and keep his memory alive. We want people to know his story and that with God there is always hope 🙏
And that there can be joy even in sadness ❤️❤️❤️
Dillon fought until he had no fight left in him. He came home on hospice October 7 at 5 pm and he died on October 8 at 7:12 pm. We thought he had more time 💔 we were so used to him always pulling through. We had been told that he was going to die since the day he was born. We did CPR on him so many times. He always wanted it right up Until he didn't. He made that decision on his own. He signed the DNR and signed himself up on hospice. He did ask me to help him decide what hospice company to use. Dillon did things his way and in his time. That stubbornness is what kept him going for so long 💙
We butted heads a lot 😂
Today makes 9 months since he died. Our days are long and hard without him. We had such a routine, we are lost without him 💔
On Sept 25 1993 we thought we would be bringing home a healthy baby boy. Our path changed quickly, to our complete surprise our little Dillon was born with Spina Bifida. As soon as I had him he was rushed to Riley Children's Hospital and I was given a Polaroid picture of him. Anthony and my dad went to Indianapolis to be with Dillon and my mom stayed with me. Later that evening I was released because I had to go sign consent for Dillon's 1st surgery. We were told he probably wouldn't make it But he did. 💙 4 days later he developed hydrocephalus and needed a VP shunt to relieve the pressure on his brain. We were told he probably wouldn't make it But he did ❤️.
DILLON lived 29 years having 54 surgeries and 39 septic infections. He was born with a heart of a warrior. He fought every battle with Grace. He walked until he was 15, he tired easily but he pushed on. At 15 he developed a tethered spinal cord from scar tissue from a previous back surgery. The surgery went well but the healing did not. The incision was pulled apart and had to heal from the inside out with multiple wet-to-dry dressing changes multiple times a day. This took 7 months to heal, in the meanwhile he lost the ability to walk. That didn't slow him down. He crawled and he crawled fast lol. We kept his wheelchair in the garage and when he wanted to go visit my mom and dad's or my sister's house he crawled to the wheelchair and off he went. At 21 he developed scoliosis and another tethered cord. He needed reconstructive surgery on his chest so his heart and lungs could function properly and a Tether cord release. Dr team of Dr's at Riley decided to do both surgeries at the same time. The surgery went well and quicker than we were expecting. But 2 days after surgery he went into septic shock. He was sicker than he had ever been. We spent several weeks in the hospital until he was well enough to go home. Fighting the infection and healing from the surgery took its tole on him. He lost the ability to sit independently and crawl. The years went on and the rest of his life was an uphill battle. He never complained. He was so limited and he had lost so much. We were devastated but he was just so glad to live ❤️
The infections came stronger and more frequent. He developed antibiotic resistance, he ran out of veins and needed a Power Port. He spent the last 3 years of his life fighting infections with too many hospitalizations to count and most of his time at home was on IV antibiotics. We had to learn how to administer them because there was little to no home health care available in our area.
We became Pros at setting up temporary hospital rooms. Feeding pumps, tubes, oxygen, ventilators, ICU monitors, IVs along with many medical supplies and medications. We NEVER allowed Dillon's illness to define him. It was a 2nd in his life. We took him riding UTV, camping and on vacations. Even when he was hooked up to the ventilator full time because of Co2 build-up. We took him as often as we could. It took a village to make this happen and we have just that, people that step up, people that care and People that were willing to help us help him ❤️🤍💙. There are no words to express what that meant to him and us.
Our lives are forever changed without Dillon 💔 we are trying to go on but it is really a struggle. We created this non-profit organization in memory of Dillon because we want to help kids in his honor and keep his memory alive. We want people to know his story and that with God there is always hope 🙏
And that there can be joy even in sadness ❤️❤️❤️
Dillon fought until he had no fight left in him. He came home on hospice October 7 at 5 pm and he died on October 8 at 7:12 pm. We thought he had more time 💔 we were so used to him always pulling through. We had been told that he was going to die since the day he was born. We did CPR on him so many times. He always wanted it right up Until he didn't. He made that decision on his own. He signed the DNR and signed himself up on hospice. He did ask me to help him decide what hospice company to use. Dillon did things his way and in his time. That stubbornness is what kept him going for so long 💙
We butted heads a lot 😂
Today makes 9 months since he died. Our days are long and hard without him. We had such a routine, we are lost without him 💔
