No more tracheostomy to hold Chace back.

Spring, it is a time of renewal, a time to clean, a time to start something new. The trees and flowers bloom with gentleness and vigor. The grasses sprout so happily. Animals bring their little ones into a warm and misty world. Humans clean their houses, windows, closets, and cabinets. Sometimes we bring little ones into the world as well.

Chace is also going to enjoy the beautiful spring days without fear of getting rain in his trach, he can help plant flowers and get his hands dirty, and as summer quickly approaches he will be able to play at the beach in the sand, splash in a little pool and his bathtub at home. There are so many things that kids get to do that everyone takes for granted. Chace spent the first two and a half years of his little life, banned from the sand box, quickly removed from the bathtub at the first sign of splashing, unable to leave the house in the rain, and the beach was off limits expect for a brief time when he visited his Grandpa out in Virginia, he laid on a large blanket on the beach in North Carolina at the beach house, but of course, mommy was ever vigilant to keep those sand particles away from his trach. His life was spent with those who loved him always saying, no, he can't go here or there and always asking everyone, "Are you sick?" I remember the first winter with Chace and his trach, staying in all of the time. When I did get out I felt disconnected from the world, and from my friends, and suddenly had a hard time socializing something I had worked on my whole life to master as I have a introverted personality. It took some time for me to let my mother and my mother in law, and even Eric to watch Chace without me being there to supervise. I was a nervous wreck the first time I left him over night. I just wanted to stay with him in the safety of the house where everything was baby and trach proofed.
Eventually I did start to let go a bit, and enjoyed my little time away knowing that he was in good hands. Of course I texted every hour to check on him.

I just want to say to those of you with kids that have complex medical issues or special needs, that you need to take time for yourself or you will loose yourself as I almost did in that first year with Chace. I was bound and determined to do it all my self without help. I pushed people out of my life and house and said I can do it myself. As time went on I got tired and stir crazy. I had to get out even if it was for an hour it was still good for my soul. I lost touch with friends whom I had previously had a close relationship with and didn't know what was going on in every ones lives or even in the world as I put myself in a little safe cocoon in my house. Some people blamed Eric because they saw him getting out of the house, they thought well he is just selfish making Cassie stay in the house with Chace all the time. They did not know that I always said "No, I will stay here, I don't want to go out or even need to go out. I just want to take care of Chace. You have fun, Eric, please go out you look like you need it."
Eric is a social person, always on the phone, texting, or getting together with friends to talk. He needs that to survive, he is an extrovert. I on the other hand could probably stay in the house and do my own thing and not talk to anyone for days and still be just fine. So I let him go, it was the right thing to do. He worked all day and I wasn't much of a companion and I often times wouldn't let anyone hold Chace when he was little because I was always making sure he was breathing, and suctioning his trach to clear his airway and just talking to him all the time. I was afraid to put him down. If your a new mom with a kid with any kind of complex medical issue or a trachostomy please don't do what I did that first year its not healthy.

I learned the hard way that holding my self and my son hostage in the safeness of my house is no way to live. Finally when Chace became more active he gave me no choice but to let him out a little within reason and safety. I knew that even with a trach he could do all kinds of things. We traveled a little bit and went to the store and just for rides. He played outside when it was nice and rode in his Grandpas bobcat. There were still all kinds of things that were off limits but he wasn't under house arrest anymore. He was happier, and Eric and I were happier.

I can't wait until he gets out of the hospital and gets to play in the warm sunny spring days! 11 more days to go!

Larynogotracheoplasty- Chace's airway reconstruction surgery.

http://www.tracheostomy.com/resources/surgery/ltp1.htm


This link gives a great overview of Chace's surgery. Please take a look.

Chace's big surgery and a new beginning.

Chace had his big surgery yesterday. The months and weeks before the the big day were filled with excitement, trepidation, and anticipation. The night before was filled with weird vivid dreams, irrational fears, anxiety and happiness at the thought of Chace not needing a tracheostomy to breath. In 6 days Chace will awake from a 7 day nap, crabby, tired and feeling funny from all the medication being pumped into his little body to keep him still and sleeping. He will for the first time since he was a infant be able to breath on his own. He will be able to voice all his opinions and wants and be able to  tell us exactly what he wants. He may still use the sign language that he knows to communicate until he gets used to his voice. I am trying to stay as positive about his future as I can I have my fears just like any mother, and will continue to forever. At this moment here at the hospital with my son sleeping peacefully in the crib next to my chair I write knowing that Monday will come soon and he will wake up ready to play. I joke and laugh and smile with the nurses and doctors hoping that Chace hears the laughter and it makes him heal faster. Laughter is the best medicine in my mind. I imagine, while the nurses bustle around the pediatric intensive care unit, that there is Chace's own personal guardian angel holding his hand and constantly praying for his speedy recovery. I think she is a beautiful angel with long golden hair, (Chace likes blonds) keeping watch over my little boy.