Still Breathing...

Life. Living. I think we take it all for granted.

Since becoming trach free, we have been LIVING! We had a "trach out" party for Brayton complete with a Mickey theme, a slide, a jumper, lots of food, cake, and icecream! Brayton played until he couldn't play anymore! He ate 2 cupcakes, drank 5 Capri suns, and even drank half a can of Mt. Dew! He was surrounded by about 160+ friends and family! That was a good day!!!

We are still celebrating! As I type this, Brayton is playing in the SAND in the backyard as I sit on a towel and watch. Sand was one of the things we stayed away from for the 2 years he had a trach because sand getting in the trach would be disasterous! Now he get sand everywhere and I can sit back and enjoy! The best moment of the day was watching his shoe accidentally come off and seeing his face as his toes hit the sand! (He didn't have on socks) Normally, he would ask for his shoe to be put back on. He just looked at me and I told him to take the other one off. He did and I took mine off too and we made prints in the sand!  An hour later, he is still barefooted outside! 

Living. Life. Living life. It is too short not to enjoy every little moment! 

Praise God for healing and for the ability to truly live life!

Power of Prayer

Prayer. Something so simple, yet amazingly powerful. For over 2 years, people from all over the country have been praying for my little boy. Although we are not out of the woods completely yet, prayers have been answered!

I am still amazed that I found this wonderful hospital and amazing doctors. For those of you who do not know, I found out about Dr. Cotton on Moms of Trach Babies on Facebook. I googled him, found his e-mail, and sent him an e-mail. in 24 hours, he had written me back and given me the name and number of his office. A few months later, we were visiting the Aerodigestive team at Cincinnati Children's hospital. July 2013, Brayton had a double stage airway reconstruction surgery. It was a success, but there was still a place that needed fixing. So people continued to pray for perfect and complete healing.

This last trip has been a nerve racking one! Never in the entire 2 years had I been more nervous than this past month. The closer this trip got, the more nervous I became! The first scope last Tuesday showed that the place that needed fixing wasn't very big. The doctors planned to use thyroid cartilage instead of rib cartilage (a true blessing that resulted in ONE incision instead of a painful rib incision too!) We left after the scope feeling positive, but still anxious.

Friday, January 17th, was the surgery day. What was scheduled as a 3 hr surgery lasted an hour and a half. We were told that Brayton would be intubated (put on a breathing machine) for 4-7 days. However, the doctors decided that he would only be intubated 24hours! Brayton was slightly sedated while the tube was in helping him breathe. Being LIGHTLY sedated means that every time nurses touched him, he woke up fighting! That first night was LONG! My little fighter was talking over the breathing machine which shocked a lot of people. He woke up kicking and saying, "dada" and "mama!" We ran to his side, calmed him down and he slept until the nurses would come in again (every 2 hrs).

Saturday morning, Brayton was extubated (got the breathing tube out) and was talking immediately. That evening he was able to eat and drink! Prayers answered! On Sunday, Brayton moved to a regular room and out of PICU. Nurses brought snow to his room in a bath bucket and for the first time ever, he got to play in the snow and build a snowman (complete with fruit loop eyes and a graham cracker nose)!!! He was able to run around the room and climb on and off the bed. The nurses even gave him a trach out party complete with a song, presents, and cake!

A follow up scope was performed on Tuesday and the doctors seemed really excited that all was well. I loved seeing the doctors smile and give thumbs up to us!

We were discharged from the hospital yesterday morning and spent the first night ever without hospital machines hooked up to Brayton, TRACH FREE!!!! I would love to say that I slept well. However, I found myself waking up and listening for breathing sounds. My son now snores and talks in his sleep! Prayers answered!

One of my favorite things has been hearing Brayton giggle. It is by far the most angelic sound I have ever heard in my life! His voice is perfect in my eyes! :)

So for those of you who have been praying, God has listened. Please continue to pray for Brayton as he continues to heal and as he grows. I am blessed that God has allowed me to be Brayton's mom and I pray that He helps me be the mom I need to be.

Prayer. Talking to God. Simple. Powerful. Our God is an awesome God!

Light at the end of the tunnel....

Brayton had his scope this morning. Doctors said his airway looks great and he is ready to go for surgery on Friday! I have mixed emotions as I think about life without a trach. On one hand, I'm ecstatic! Brayton's voice will improve. We won't have to suction, carry bags, change ties, change trachs, or worry about water in the tub! We can go to the beach! And I can kiss his sweet little neck!!! On the other hand, I'm scared! I will no longer have direct access to his airway which means when he has a cold in his chest, I can't suction out the secretions. I will be worried his oxygen is dropping. He won't have his noisy machine when he sleeps which he is SO use to! What terrified me at the beginning has become my life. It's routine. We give a bath, clean his trach, change his ties, and put on a "nose" every night. In the mornings, we clean the trach, put on a "nose, " Brayton hides the "nose," we get a new "nose," then find the old "nose," and eventually get back to the nightly bath! Things will change. And change, although good, is frightening. I can't explain how grateful I am that trachs were invented! And I don't want to imagine what my life would be like had they not been!

Just about an hour ago, I gave Brayton a bath. Then Luke, Mrs. Jean, and I cleaned his trach and neck. After that, for what I hope is the LAST time, I took his trach out and put a new one in! I use to be so afraid of doing that especially after he turned blue on Luke and me when I couldn't get it back in. Now, after 2 years, it's simple! I want to remember that moment. I want to remember how God taught me to overcome my fears! I want to remember that from the first trach change to the last how much I have grown. I want to NEVER take life for granted, especially Brayton's, because I know how easily it can be gone. I want to remember that with God, I can do what I never thought possible! He alone is my strength and my rock!

I also never want to forget how many people have prayed for us and helped us! You guys are awesome! Even if I haven't thanked each of you individually, please know that I am so very thankful for each of you! 

As I look forward to Friday, I see a light, a new beginning. Things will change and I will overcome my new fears. I will remember all the lessons God has taught me and how precious life is. Today, I am thankful for answered prayers, but mostly for dark tunnels because without the dark tunnel, I would never truly appreciate the light at the end!

"You, Lord, are my lamp; The Lord turns my darkness into light." 2 Samuel 22:29