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

Update/Upcoming Surgery

We had a good Christmas. Since Brayton was on lockdown, we missed a few big family Christmases. But we did go to ones with just immediate family. We are so blessed to have families who understand. My little boy has been a trooper and has had a blast opening presents. 

Brayton's personality is definitely coming out! He throws things, crosses his arms and pouts. But my heart overflows every time he grabs my hand, kisses my cheek, and gives me a bear hug. I love his personality (even the rotten parts) and it's a joy to watch him grow!

He has learned to say several new words. He loves learning words and tried so hard. Second to "mama," my favorites are "football" and "basketball." I'm pretty sure we have a sports star on our hands! He has also started singing into a microphone that he received for Christmas! I can't wait until he is singing specials at church!

So far, Brayton is well except for a cough. Started allergy medicine at night in hopes of knocking it out this week! In 2 weeks we will be in Cincinnati! 

Jan 13 is a scope like we have done numerous times in the past. He will be put to sleep and they will go in to look. Jan 17 will be the actual reconstruction surgery. He will be put to sleep and they will take cartilage from his rib to use to fix his airway. The trach will be removed and a breathing tube put in to act as a stint until it heals. After surgery, he will be in a medically induced coma and intubated for 4-7 days. Which means my little climbing, crawling, dancing, jumping baby will be still. When the 4-7 days is over, the breathing tube will come out and he will wake up. We will be in the hospital through the 31st. And after that, we may have to stay local for another week. But then we will be trach free and home!

Please keep praying. Anxiety gets worse the closer the date gets. Paranoia over germs also gets worse. Pray Brayton stays healthy so the surgery will not be postponed and for calmness for Luke and me! We know our God has a plan, and that He was, is, and will be there. 

Eventful Weekend

This past weekend was an eventful one for Brayton. A Poker Run was held on Saturday to help raise money for Brayton's medical bills and upcoming surgery. Although Luke has participated in a few of these before, I had never heard of one. It was definitely a fun experience. 

At 11:00 am, 74 bikes and 4 vehicles met up to start to the 120 mile motorcycle ride. There were about 100 riders total!!! Brayton was feeling well so I took him to see the bikers off and he had a BLAST! He was so excited to see all of the bikes. He was pointing and running from one bike to another. He even sat on a few and pushed buttons! He and I both made a lot of new friends that day!

Words can not express how thankful we are to all of the bikers and participants who helped with the Poker Run! I am overwhelmed at the love and kindness that was shown! Thank you ALL!

Sunday was another interesting day for Brayton and me. We went with family members to "Boo at the Zoo" in Baton Rouge. They had booths set up with candy and Brayton thought it was so much fun to get his bucket filled up!

So after this fun filled weekend, I finally have a few minutes to sit, reflect, and blog! This weekend was amazing. God just keeps teaching me knew things through this journey. We are in the home stretch and there is FINALY light at the end of the tunnel! We go to Jackson for another scope/surgery on Dec. 3. If things still look well, we will schedule an appointment for Cincinnati around March or April to have another airway reconstruction surgery. It will be like the one we had in July except it will be the single stage. He will have the surgery, get the trach out, and be intubated for 4-7 days. A couple weeks later, we should be able to come home trach free!!!

As long as nothing changes, this is our game plan! I am not sure what will happen next: more surgeries, follow ups, etc. But I do know that our God is an awesome God who performs miracles! I have seen His work through Brayton and I am blessed beyond what I deserve!

Keep praying for perfect and complete healing! Love you all!

Our new friends!!!

Brayton LOVES motorcycles!!!

Excited over candy!!!

Good News from Cincinnati!!!

God is good! That is the best way to start off this blog! He answers prayer!

This was our first trip back to Cincinnati Children's Hospital since surgery in July. As most of you know, we have gone to Blair E. Batson every 2 weeks in between Cinci trips for dilations of the airway. Each visit, there was a little improvement!

We arrived in Cincinnati this Tuesday anxious about what we would find out. Wednesday morning, after Brayton's scope, we were told that in 2 months we needed to follow up at Batson and in 6 months we would come back to Cincinnati for another graft surgery. After this surgery, Brayton will be intubated for 4 days and will come home TRACH FREE!!! Hallelujah! God is awesome!

Please continue to keep our little one in your prayers! We trust that God will continue to heal Brayton's airway! We still need perfect healing in order for thing to happen as planned!

Our God is Healer!!!

Memories...

Today has been a "weird" day for me. I have had a funny feeling all day and it wasn't until I was in the shower tonight that it hit me...today is AUGUST 30th.

All kinds of emotions hit me as I think about what happened 2 years ago on this very night: I lost my baby! Only for a minute or two, but the reality is the same.

As I think about that night, the first emotion that comes to me is anger. How could the ER doctor send home a 3 week old baby who wasn't eating or breathing right not once, but TWICE?!?!? They thought I was crazy for bringing Brayton back the second time. They treated me like I didn't know what I was talking about, that it was just a "cold." I get angry when I think about how different things may have turned out had they admitted him sooner or at least called in a pediatrician. I get angry at myself for not going straight to Jackson when I knew something was wrong.

Remembering that night, two years ago, my heart breaks. I watched my sweet angel turn blue before my eyes. It is like a bad movie that keeps replaying in my mind. So many people ran into the room. I remember calling my mom and telling her I needed her. I remember my sister being the first person to get there. I remember Aunt Becky coming up and going in Brayton's room to check on him for me. I remember the fear. I have never felt fear the way I did that night. I couldn't stop shaking. Then I remember...the prayer.

It is amazing how God is in the midst of our suffering. He is there even when you think he isn't. I remember right when I got off the phone with mom, Cynthia Sprague, the nursing assistant asked if I was ok. I simply said, "no." She wrapped me in her arms and she prayed. I don't remember the exact words she said, but I remember God wrapping his arms around me. I remember and still feel the calmness and peace that took over my fear. I can't describe it and I will never be able to, but God totally took over. I was able to walk into Brayton's room after they had him stable and hold his hand. I was able to answer questions with clarity. God gave me strength.

During the helicopter ride, something happened to Brayton. They cut my headphones off so I wouldn't hear them talk about it. I was scared again, and God sent a shooting star right in front of me. Something so simple, yet so Amazing. I have not looked at a shooting star the same since that night.

So tonight, as I relive these emotions, do I question God? Do I ask why? Do I get angry at him? Of course. I am human. But because of the things He did for me that night and is still doing for me, I have grown and changed. I KNOW without a shadow of the doubt that there is a reason. God has plans that were beyond what happened that night. I may not know why he chose us for this road, but I accept it. Lives have been touched because of our experience. MY life has been touched because of this. I will never take a single breathe for granted again.

So tonight, hold your children close. Shower them with kisses. Let them talk and sing a little past bedtime tonight. Let them dance! Then as they go to sleep, watch them breathe and pray for them!