Dylan Hill
TrachKid Profile
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Dylan was born with lots of medical conditions and a preemie. He was born at home and transported to Brenner's Children Hospital where he live for 2 years. His major medical problem was renal failure so he was started on dialysis. First it was peritoneal dialysis, then manual dialysis, last was hemo-dialysis. He coded over 17 times, finally he had to get a tracheostomy tube. I meet Dylan for the first time when he was 16 months and fell in love with him. His birth parents abandoned him in the hospital. From that first meeting I knew he would be my son. So the process began. He became my son on May 9th, 2008. On October 13, 2007 he got his kidney transplant and after recovering from the surgery he went home on November 29, 2008. He stayed home for 2 days and went back to the hospital for infection, he came home 2 weeks later and the day after Christmas we took him back to the hospital because his trachea had collapsed. So he had to have a larger trache put in a 5.0 pdl. The kidney caused so much stress on him to breath it was a factor in this condition. So in January he came back home and stayed there for 1 year before having to go back to the hospital. In that time span he fought the vent every step of the way till the doctors finally took him off of it. He has since then had his cleft palate fixed and in February he got his first passy muir valve. He wore it for 2 months and then he got capped off. He wore his cap for about 3 months and on July 21, 2009 he was decannulated. That was and is the happiest day of our lives. The doctors did not think he would make it this far. Everyone who seen him wrote him off but he has proven them wrong. Dylan is a fighter and loves life. His favorite things to do now is swing and go golf cart riding with his daddy. He loves music and playing with all of his toys. He is a very active child and is learning to walk right now. Our next thing to work on is his g-tube. We want him off of it and take everything by mouth.
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- 2 years 28 weeks
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- United States
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- North Carolina
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Beach Vacation
29 August 2009 - 11:51am — nanaof3luvsjcWhoo hoo one week before school started we went to the beach to visit relatives and enjoy our time in the ocean and pool. It felt good not having to load up all of the equipment this time. The only thing we took was his feed pump and his pulsox machine. Dylan's new nickname is fish. He loved the water and the ocean. He was not sure about the sand. The only thing is that when we got back we both got colds. Boo hoo. Other than that we got nice tans and want to be able to go back sometime after labor day weekend.
We are going camping Labor day weekend. No machines except his feed pump.
When we got back he had a doctor appointment with the ent and he has discontinued all of his machines except the feed pump. So now I am waiting for them to come pick up all of the equipment so I will be able to rearrange his room.
I am writing this to let others know that it can be done. You can take trips with the vent and trache it just takes a little planning courage.
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Making sounds
27 July 2009 - 8:41pm — nanaof3luvsjcIt has been 6 days since the decannulation took place and already I am making lots of sounds and saying mama a lot. I am screaming very loud and going where ever I want to but mom and dad will come get me and make me go back to where they are. I went swimming today for the first time without the trache. I splashed and splashed the water the whole time I was in the pool. I splashed so hard that I got water in my mouth and enjoyed it. There was a baby pool there with a mushroom shaped thing with water running down like a shower and I would not get near it. It was too much like a shower which I do not like. Over all though I had a good time and plan on going more places before summer is over. Oh yeah I went to the park on Saturday and rode the train for the first time and the merry go round and swinging. It was hot but I had a good time.
On Wednesday morning I will no longer have a nurse staying with me at night. But this will be just fine I am breathing great on my own.
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| Title | Poster | Replies | Updated |
|---|---|---|---|
| Beach Vacation | nanaof3luvsjc | 0 | 2 years 23 weeks ago |
| Making sounds | nanaof3luvsjc | 1 | 2 years 27 weeks ago |
Guestbook
Hi im scotts mum. You and
Hi im scotts mum. You and your son are such an insperation! God bless x
Thanks
Hi, I am Lillies mom and reading your story really made me smile! My daughter is 16 months old and has had her trach since she was one day old. Going places for my family has been very difficult so we haven't went too many places. Lillie is scheduled for decannulation in Jan. and reading stories about successful ones really gives me hope that hers will also go well. Thank you for sharing your story!