Cameron Nathaniel Evans
Cameron Nathaniel Evans
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Our little miracle, Cameron Nathaniel Evans was born on 09/04/02 with a rare condition called Cystic Hygroma throughout his cheeks, throat and the base of his tongue, which is causing his airway to be obstructed. He has had the trach since he was 2 months old.
Unlike most babies that have this condition, Cameron's cysts are very small and clumped together, where other children have a few larger cysts that can be removed with surgery. The doctors have determined surgery isn't an option for Cameron due to the size and how many there are. There is no way they could get all of them and if they tried, they would be putting major arteries in jeopardy, causing more damage. At this point, we are just hoping and praying that some doctor will come up with a cure for the condition.
My husband and I were very overwhelmed when he got the trach. It was so quick. We took him into the ENT doctor at Primary Children's
Hospital in
SLC, UT for a follow-up and the doctor came to the conclusion that the cysts are growing rapidly and Cameron needs a trach. Two days later, we were in the hospital, waiting, worrying, not knowing what to expect.
Cameron was in the ICU unit for the 5 days after the trach was placed. During this time, we went through a crash training course in trach care. I was so scared. How was I going to remember all of this? Also, we had found out that my insurance would not cover a nurse to come in and help out, so we were on our own from day one, which I am now thankful for as we had to do everything on our own, hands
on. If something goes wrong, we have the phone to call 911...this helped us learn VERY quickly. It was scary for the
first month or so, but now the trach care, suctioning, everything is just an everyday thing we have gotten used to. My other children have even learned a few things when it comes to trach care.
Just last night Cameron has started to put his little finger in the trach hole and make noises. I cried!!! It was a beautiful moment. We have the Passy-Muir speaking valve, but he doesn't like it, he just coughs it off. So I am just thrilled that he can make noise now. We are working on saying
"Mama" while the finger is on the trach..
If there is one thing I have learned from all of this, it is to NEVER take your crying and screaming baby for
granted. What I wouldn't give to be able to hear my son crying and talking and being as noisy as he wants to be. And I know if he is anything like my other kids, he wants to be heard.
I am also thankful that we live in this day and age where they have the technology available to save our precious little angels with the
tracheostomies. If he were born 100 years ago, I would have lost him and don't know what I would
have done.
Needless to say, Cameron is definitely our little miracle that was meant to be here. It wouldn't be the same without the trach, it makes him so unique and I wouldn't trade him for anything.
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Update: He was successfully decannulated on 10/20/05.
