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!!!
Wednesday, May 1, 2013
Tuesday, April 30, 2013
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!!!
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!!!
Monday, April 29, 2013
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!
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!
Friday, April 26, 2013
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!
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!
Tuesday, March 19, 2013
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!
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!
Friday, March 8, 2013
Learning How to Hit the Curve Ball of Life...
Well, life has thrown us yet another curve ball! I should have known it would not be this easy...
Brayton woke up this morning with fever and vomitting. We went to the doctor and found out that he has a virus. We called Cincy and they said it was probably best if we rescheduled the trip because it would be bad if we went and had to cancel everything. Also, since Brayton has to go under anesthesia, we do not want him to be weak at all. So, the morning has been spent cancelling flights, rental cars, hotel rooms, and rescheduling appointments! At the moment, we are looking to go at the end of May, beginning of June. And the appointment will be made either later today or next week.
Needless to say, we are all very bummed out! I told my mom that I am sure there is a reason even if I can not see the bigger picture right now: maybe something would have gone wrong on the trip or maybe another kid needs the appointment more than us and now there is an opening for him! Regardless, God has something planned.
So, keep Brayton prayed up as we fight this virus and start over with trip planning!
"Even If" by Kutless
http://youtu.be/HqOkZiOb9u0
Lord we know Your ways are not our ways
So we set our faith in who You are
And even though You reign high above us
You tenderly love us
We know Your heart
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
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn't come
Even if the healing doesn't come
Brayton woke up this morning with fever and vomitting. We went to the doctor and found out that he has a virus. We called Cincy and they said it was probably best if we rescheduled the trip because it would be bad if we went and had to cancel everything. Also, since Brayton has to go under anesthesia, we do not want him to be weak at all. So, the morning has been spent cancelling flights, rental cars, hotel rooms, and rescheduling appointments! At the moment, we are looking to go at the end of May, beginning of June. And the appointment will be made either later today or next week.
Needless to say, we are all very bummed out! I told my mom that I am sure there is a reason even if I can not see the bigger picture right now: maybe something would have gone wrong on the trip or maybe another kid needs the appointment more than us and now there is an opening for him! Regardless, God has something planned.
So, keep Brayton prayed up as we fight this virus and start over with trip planning!
"Even If" by Kutless
http://youtu.be/HqOkZiOb9u0
Lord we know Your ways are not our ways
So we set our faith in who You are
And even though You reign high above us
You tenderly love us
We know Your heart
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
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn't come
Even if the healing doesn't come
Wednesday, March 6, 2013
Cincinnati, here we come!
In a few days, we will be Cincinnati bound! We will be seeing the Aerodigestive team at Cincinnati Children's Hospital. The Aerodigestive team is internationally known for their approach to caring for children with complex airway, pulmonary, upper digestive tract, sleep and feeding disorders. They are one of the best centers in the world at meeting unique needs in an effective, time-efficient manner. We will see several different specialists and they will all come together to do a scope so Brayton will only go under anesthesia once! Click here for Information on the Aerodigestive Team
I am always amazed at how God works things out. I found out about these doctors through a group on Facebook (Moms of Trach Babies). I e-mailed the head of the team and within 24 hours, he e-mailed me back! Several months later, we are heading to meet these doctors. Definately a God thing!
I have written on here about running in to people who have had trachs and are fine now. God gives these people to me at just the right time. Just this past Thursday, Mom, Brayton, and I were eating at Logan's. With the upcoming trip, we were already getting anxious and out of the blue our waitress told us not to be worried or get discouraged because her step brother had a trach until he was 6 and when it came out, he could talk just fine! Did she know we were worried about an upcoming trip? Nope! Did she know Brayton's story? Nope! She was just someone who saw Brayton dancing and eating rolls. She did not know us or what we have been through or will go through; and yet, she calmed my nerves. WOW! Our God is an awesome God!
Keep us in your prayers! God is going to do great things in His time! We love you all!
God, please heal Brayton's airway perfectly and completely!
I am always amazed at how God works things out. I found out about these doctors through a group on Facebook (Moms of Trach Babies). I e-mailed the head of the team and within 24 hours, he e-mailed me back! Several months later, we are heading to meet these doctors. Definately a God thing!
I have written on here about running in to people who have had trachs and are fine now. God gives these people to me at just the right time. Just this past Thursday, Mom, Brayton, and I were eating at Logan's. With the upcoming trip, we were already getting anxious and out of the blue our waitress told us not to be worried or get discouraged because her step brother had a trach until he was 6 and when it came out, he could talk just fine! Did she know we were worried about an upcoming trip? Nope! Did she know Brayton's story? Nope! She was just someone who saw Brayton dancing and eating rolls. She did not know us or what we have been through or will go through; and yet, she calmed my nerves. WOW! Our God is an awesome God!
Keep us in your prayers! God is going to do great things in His time! We love you all!
God, please heal Brayton's airway perfectly and completely!
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