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!

Update from Cincinnati...

We have been in Ohio for almost 2 weeks and it is safe to say that we are all ready to be HOME! Brayton is going nonstop and I am thankful for a lake with a playground that is 4 miles away from the hotel! Brayton loves to slide! This week we have been trying to keep him entertained with the aquarium, chuck e cheese's, and the park! Today, he and I will attend our first MLB game! :) We went to get Reds shirts the other day and he found a cap he liked. He put on a show (smiling and carrying on) and the manager came, took the tags off and said, "the hat is on me." Sweet lady! So he will be sporting his Reds shirt and cap later today! Tune in to Facebook for pics!

Brayton has been doing great this past week. Surgery was less than two weeks ago and other than scars, you wouldn't even know it! He has been bouncing off the walls! He still has stitches under his trach from the stent removal on Monday. But those aren't slowing him down any! 

Swallowing is still a challenge. He is doing awesome with foods, but thin liquids are not his friend! Several people have asked why so here is an explanation: thin liquids travel fast when swallowed. Because he has never had to control his swallowing and he has never had an opening to protect (it was 95% closed off), it is taking a while to learn to close off his airway when he swallows. With thicker foods, his reflexes have time to close the epiglottis, the flap that closes off the airway, because they move slower. The best way to put it is that it is like a muscle that is weak and needs exercise. So we are thickening liquids with a gel so he can get stronger at swallowing. Food coloring in his liquids helps us see how much is coming into his airway because it comes out of his trach. Right now, Brayton is slowly improving and less and less blue is coming out! I will slowly thin down his liquids as he gets better at protecting his airway.

Please feel free to ask me questions if you do not understand something. I try my best to explain, but I know it is hard to follow sometimes!

Bray will have another scope surgery this Monday! Hopefully, we will have a better plan as to what we will need to do next! Keep praying for swallowing to improve, and for complete healing. God has been good to us these past few weeks and we give Him praise!

3 days post op...

Well, surgery went well! Today is Day 3 post op and Brayton is getting stronger everyday! We were able to get discharged to the hotel with an NG tube and feedings. He can swallow a little yogurt and mashed potatoes, but gets choked on liquids so the NG tube is a necessity. We got trained in an hour on how to use it and we will use it on our own for the first time in a few minutes. 

The great thing about coming to the hotel is that little man is able to play. Because he is positive for staph, we were confined to his room in the hospital! Here, he can walk around and play on the floor. Not to mention, he doesn't have an IV or monitors hooked up to him! He is loving it!

Monday morning, the stent will be removed around 10:15 (9:15 MS time)... I am hoping we get some answers for what comes next. Please pray that Brayton can eat after the stent comes out and that his airway shows healing!!!

We love you all! Keep praying and keep believing!

Surgery Complete!!!

After a VERY long day, Brayton is resting comfortably. The doctors decided to do double stage which means that he still has a trach and a stent was placed to hold the airway open. The 1st stage is complete. The 2nd part will be Monday. This is when the stent will be removed. When the stent is removed, we will know a little more. Right now all looks good. There is a small, loose piece still in his airway right above the trach. They will not know if it will be ok or if another graft will have to be made. We will know more on Monday, but they said it could be fine on its own.

There are so many possibilities right now. I will not mention them all because that is all they are: possibilities. Nothing is definate right now other than my little man is okay! The main step is removing the stent. Then they have us scheduled for a scope on the 22nd. After this scope, we will plan for the near or far future. 

We MIGHT get discharged before the 22nd, but they want us to stay close until then so we will stay here in Cincinnati.

THANK YOU ALL for the prayers! I have never felt so lifted up before. God has blessed us with some awesome people in our lives! We love you all!!!

Power in Numbers...

As I was lying here awake, I looked over my Facebook. Amazing, technology is!  I have been looking at pictures from a scrolling marquee at Vicksburg mall, to a softball team wearing "Pray for Brayton" bracelets, to posts and messages from people. My family, Brayton especially, is blessed to have SO many people praying! People we know, people we just met, and some people who just happen to know someone that we know are all praying for us! This makes me cry with happiness and also helps give me strength for what we are about to face this morning! I decided to look up "bible verses on the power of numbers and came across this article on "The Power of Numbers." (The web site is listed at the end is where the article is from but will not take you to the exact article.)

Power in Numbers

I believe the Bible teaches us that when we join together the impact is multiplied far beyond just the addition of those who join together.  One plus one equals far more than two.  Let me show you what I mean.

In Deuteronomy 32:30, it says,

How could one chase a thousand, and two put ten thousand to flight, unless their Rock had sold them, and the LORD had surrendered them?

While this verse deals with Israel's disobedience to God and subsequent retreat from their enemies, think of what might be possible when God's people obey Him!  It says that one could chase a thousand, but two could put ten thousand to flight.

While one person can impact a thousand, two people can impact ten thousand.  That is a ten-fold multiplied effect!

Leviticus 26:7-8, when God was giving promises to His people if they would walk in His ways, states this,

You will chase your enemies, and they shall fall by the sword before you.  Five of you shall chase a hundred, and a hundred of you shall put ten thousand to flight;  your enemies shall fall by the sword before you.

Notice God says five will chase a hundred, and a hundred will chase ten thousand.  By increasing the number of people times 20, their effectiveness would increase times 100.  Again, that is a multiplied effect.

You have probably heard of the Clydesdale horses, those big, strong workhorses that can pull a lot of weight.  One horse by itself can pull two tons, but if you yoke two together they can pull 23 tons!  That is incredible!

And that is how it works when we pray together with one another.  When we join our forces in prayer and connect with heaven, that is what happens.  There is a multiplied effect. 

Www.christianrevivalnetwork.net

Reading this, all I have to say is WOW and thank you all for lifting us up! 

Believe... In love, in faith, and WATCH this miracle! "If you can believe, ALL things are possible!" Mark 9:23

Major Surgery Quickly Approaches....

I have been reading my past blogs and crying. Who would have thought that my own words and past experiences would calm me down so much from the anxiety I have been feeling! Starting yesterday, I started to feel really anxious. Not just nervous before a big game or singing in front of church, but REAL anxiety. Luckily for me, I am pretty good at appearing strong when I am not. Today, I started reading through my old blogs. My own words reminded me, "God was there. He was, He is, and always will be!" Praise God! Why should I be anxious when my God is here? He has gotten me through so much already. Why should I doubt Him now? The answers are simple: There are NO reasons to be anxious or doubtful. God is already there. He is past, present and future. I have nothing to fear!

As I continued reading old posts, a sense of strength came over me. If I can get through the past 2 years, I can make it through this too! My God will not forsake me! 

The Lord replied, "I will personally go with you, and I will give you rest - everything will be fine for you." Exodus 33:14 (NLT)

God, please continue to heal Brayton's airway perfectly and completely!

Surgery in 12 days!!!

As the surgery draws closer, several songs have been in my heart. Blessings by Laura Story, Only A Mountain by Jason Castro, and Even If by Kutless. In that particular order, I am reminded that...

1. Blessings come in many shapes and forms. Each pain and heartache is a revealing of a greater hope that we can't comprehend. And through all the tears, I know God is real now more than ever! I have been blessed beyond measure! "What if trials of this life, the pain, the storms, the hardest night, are your mercies in disguise"

2. Faith can move mountains! "This is only a mountain. You don’t have to find your way around it. Tell it to move, it’ll move. Tell it to fall, it’ll fall. This is only a moment. You don’t have to let your fear control it. Tell it to move, it’ll move. Tell it to fall, it’ll fall."

3. God is still good through it all no matter the outcome. The hardest lesson I have had to learn: "Lord we know Your ways are not our ways.

So we set our faith in who You are.

Even though You reign high above us,

You tenderly love us. We know Your heart, And we rest in who You are.

EVEN IF THE HEALING DOESN'T COME, And life falls apart, And dreams are still undone, YOU ARE GOD, YOU ARE GOOD, Forever faithful One

Even if the healing, Even if the healing doesn’t come!!!

You’re still the Great and Mighty One

We trust You always. You’re working all things for our good. We’ll sing your praise! EVEN IF THE HEALING DOESN'T COME."

God, continue to heal Brayton's airway perfectly and completely!

News from Cincinnati!!!

I FINALLY talked to Cincinnati today! The nurse hasn't called because the doctor was trying to make a final decision. Basically, the plan to have Single Stage LTP has changed. The Aerodigestive Team decided that Double Stage LTP might be better for my little man! However, when the surgery starts and the surgeon looks inside, the plan could change back to Single Stage.

The surgery is basically the same. Both take rib cartilage to reconstruct the airway. Here is the difference:

Single Stage: The surgery is done, trach comes out, ventilator (life support) goes in to act as a stint for the airway, he is in a medically induced coma in ICU for 7-10 days, we stay in Cincy up to 4 weeks, come home TRACH FREE!

Double Stage: The surgery is done, trach stays in, stint goes in to hold the airway open, we stay a week, come home. 6 weeks to 3 months later, we go back, stint comes out, trach comes out, we stay several days to make sure all is well, come home TRACH FREE!

I fully trust Dr. Cotton and his team! I feel like they truly have Brayton's best interest in mind. I do not have a date yet, but I will by tomorrow even if I have to call every hour!!! :)

Please pray for the team as they make decisions! Pray for Luke and me as we work with the doctors! Pray for Brayton that God CONTINUES to heal his airway perfectly and completely!!!

Love you all!!!

Jesus said to him, “If you can believe, all things are possible to him who believes.” (Mark 9:23 NKJV)

My 2nd Mother's Day...

As Mother's Day approaches, I have been thinking about how blessed I am to be a Mom. And not just any mom, a TRACH mom! When this all first happened, I never would have considered being a trach mom as a blessing. However, I have grown so much because of my little miracle! I have learned to put someone else's life ahead of my own. I have learned to fight and stand firm. I have learned patience (still working on this one). I have learned that there is a bigger picture. I have learned to smile through every circumstance (this, Brayton taught me)! I have grown wiser. God has shown Himself to me full force through my smiling angel. God knew what He was doing when He sent Brayton to me. And it has been the greatest adventure ever!

I have also gained a new respect for my mother! She has been my rock, my friend, my counselor and so much more! Words can't describe how much this amazing woman means to me!

My mother in law has been amazing! She keeps Brayton instead of traveling with her husband so that I can work and is always there when I need her!

I am blessed with two wonderful motherly examples! Having Brayton has made me respect each if them so much more! I would not have made it this far without them!

As we continue our journey, I am blessed, loved, and taken care of! And most importantly, Brayton is blessed, loved, and cared for!

Happy Mother's Day to ALL! 

God, continue to heal Brayton's airway perfectly and completely!!!

Results...

Ok, friends, let me start by saying that I going to explain this the best I can considering I am pretty much exhausted!

Dr. Cotton won me over when he said in his British accent, "There are no stupid questions. Your son is your most prized possession, and you are giving him to us to take care of. That is how we will treat him too."

The GI and pulmonary doctors said everything on their end looked good. Each doctor did tests and results will not be in until next week.

ENT, Dr. Cotton, said there is no reason that surgery can't be done. So, as soon as we can get it scheduled, Brayton will be having a Laryngotracheoplaty (LTP). There is a single stage and a double stage. Dr. Cotton thinks the single stage will be the best for Brayton. Basically, we will come back to Cincy, and will be here for 3-4 weeks. They take cartilage from Brayton's ribs and use it to create an airway. they will also remove the trach. He will be sedated and intubated for 7-10 days following the procedure. The tube for intubation will act as a stint for the new cartilage. When the tube comes out, we will be trach free!

The procedure can fail. But if that happens, we go back to the trach and we figure something else out. However, Dr. Cotton, the "inventor" of the surgery, is very confident that all will go well.

They only issue we should have when it is all over is that his voice will be very hoarse and raspy. It will take a while for him to speak well though. But I will take hoarse and raspy over nothing ANY DAY!!!

I will have full details next Thursday of the plan changes after the test results come in. The following week, we should have a date!!!!

PRAISE GOD FOR ANSWERED PRAYERS!!! Keep praying as we still have a long road ahead of us!!!

One day down... A few more to go!!!

Today went really well! We were at the hospital the majority of the day! We met the GI doctor and pulmonary doctor! They were great! Both, plus ENT will do scopes tomorrow and biopsy parts of his lungs and esophagus. Pulmonary will lavage his lungs to test for aspiration.

Tomorrow is the biggest day, nothing to eat after 2:30am!!! We will get there at 8:30 and he will go back at 10:30!! Triple scopes will be done and an impedance probe put in place! The entire procedure should take about an hour! We will talk to the entire team after the scope!

We will stay in the hospital tomorrow night! I will update ASAP but we will definitely know more tomorrow!!!

Pray Hard! Love you all!!!

God, please heal Brayton's airway perfectly and completely!!!

We are in Cincinnati!!!!

We have had a long day! Praise God that we made it here safe and sound!

Brayton LOVED flying! His face when we first took off was priceless! He was all grins and his eyes lit up! He has been a trooper! On our 2nd flight, he fell asleep and slept until we landed! He has had an exciting day! As I type, he is playing with the hotel's phone and running all over the place!

Cincinnati Children's Hospital is like a city in itself! Luckily, we found where we needed to go for tomorrow! It didn't seem too complicated!

It is 5:00 here and we are all in our rooms resting! Getting up at 2 am is finally taking its toll! We are staying in tonight and hopefully we will be recharged by morning!

I will try to blog every night to keep everyone updated! We love you all so much and appreciate the thoughts and prayers!

Our Itinerary for Cincinnati!

In a few days, we will be flying to Cincinnati, Ohio!!! Yay!!! We are excited and anxious! My mom, Mr. Earl, and Mrs. Jean will all be traveling with Luke, Brayton, and me! Brayton will be seeing the Aerodigestive team!

Information on the Aerodigestive Team:
http://www.cincinnatichildrens.org/service/a/aerodigestive/default/

Our schedule is as follows:

Monday: We will fly out bright and early! We will get to Cincinnati before lunch! Luke and I plan to find the hospital and figure out where all of the appointments are!

Tuesday: Brayton has an appointment at 10:30 for an anesthesia consult! He also has to have a chest x-ray then we have a pulmonologist (lung doctor) appointment at 2:15!

Wednesday: Brayton will go under anesthesia for 2 scopes at 10:30am! One with the pulmonologist (lung doctor) and one with ENT (ear, nose, throat doctor). The ENT doing the scope is the famous Dr. Cotton who is world renown! Brayton will be admitted to the hospital because while he is under, the gastrologist (stomach doctor) will put down a 24 hour impedance probe to check for acid reflux! We will spend Wednesday night in the hospital!

Dr. Cotton's biography: http://www.cincinnatichildrens.org/bio/c/robin-cotton/

Thursday: We will be discharged and have an appointment at 8:00am with ENT to do a swallow study test.

Friday: We will all fly back to good ol' Bogue Chitto!!! :)

Thank you all for all of the prayers! God led us here and I know He has a plan! Love you all!

God, please heal Brayton's airway perfectly and completely!

Cincinnati Trip: April 29- May 3

Brayton has fully recovered from the terrible stomach bug that prevented us from going to Cincinnati! He is in full force and into EVERYTHING! I am loving every moment of it!

We have a new date for Cincinnati now! We will leave Monday, April 29th and return Friday, May 3rd! An itenerary is being sent, but according to the scheduler who I talked to, we will have ALL of our clinic appointments on Tuesday, some in the morning and some in the afternoon. Wednesday morning will be the scope. According to other trach moms, after the scope, the doctors will meet with us to discuss their findings and give a plan on what we will have to do. We will have to spend the night at the hospital that night because they will also do a 24 hour probe to test for reflux. Thursday morning, we will be finished! My wonderful sources told me that the following week, the aerodigestive team will meet to discuss Brayton's case and will call me to schedule other appointments!

So the countdown begins again! Only a few more weeks and we will be Cincy bound!

Pray that Brayton stays healthy and that nerves are calm! (I had a nightmare last night that we missed the plane and did not have all of Brayton's necessary equiptment with us!)

God is in control! We will not be shaken!