Brycen M

duallyspeed

duallyspeed

New Speedway Boogie
Good news, they found a heart for little Brycen!!
Lets pray for Ben and family.Also lets pray for the donor family this has to be a hard time for them.May God bless there unselfish act by giving another life a chance.Thank you.
 
My son

Thanks August. Brycen us going to go through a lengthy surgery they will have to undo the previous 2 heart reconstructions to get back to the point of accepting the new heart. The surgery time has being pushed back a couple times today due to the fact that the heart is the last organ to remove and they have had to deny some recipients forcsome reason or another. Either nonmatch or sickness. So they have to find someone for them before he gets his heart.
Brycen is doing fairly well considering his condition so that will help in his acceptance and recovery. I am happy that God has given him this chance and believe that God is in control.
I hope everyone remembers the family that listed their child as a organ donor they have made it possible for my son to have a chance to live. We hope we get the chance one day to thank them and tell them how much this has meant to us.
Please be in prayer and I will update with any news.

Thanks
Ben
 
Wow, that is amazing. Thank You for the updates.

I will be praying for your son as well as the family of the donor.

God is good.
 
Brycen...... long detailed update

I cant say enough thanks for the selfless act of the family that was the donor for my son's heart. May God bless them for their gift. I hope we can thank them one day.
Just to give some background my son was born 7/1/10 he is 9 1/2 months old. He had his first surgery as soon as he was born because without the left side of his heart that sends blood to his lungs he wouldnt be able to take his first breaths of life. Things were reconected and rerouted to the right side and that side of his heart was left to do double duty of right and left. A few months later his breathing and eating and other things worsened and took him to get checked out. He was in full heart failure and was told to rush him to the hospitial. The problem was found to be a heart disease that causes the arteries to become brittle and thin and restricted. They treated the virus attacking the heart and proceded with the 2nd stage of reconstruction that they believed would at least give him some more time to find a heart.
To update everyone on his progress: The surgery was a very long process because the doctors had to undo the previous 2 reconstructions that was to fix the condition of HLHS. When they started they were very pleased how everything was going the scar tissue was minimial and hooking up the heart by-pass pump to remove his old heart went very well. The bottom kind of dropped out when they went to start grafting in the arteries some from his old heart some from the donated heart and some from the donated old surgery and some new donated. You could just imagine the mess that had to be constructed out of all this. Some of the arteries were foung to be fused to the heart cavity and brittle and thin all from the Myocarditis Virus that he had causing the second surgery. But they cut spliced and remade the Aortic Arch that connects all the bodys main arteries.
This is when the bottom fell out and they let the new heart start to pump. Everthing look great they were controling the bleeding "as any surgey there is alot of blood but as long as it controlled its ok" the surgeon saw a area that was bleeding more than he liked so he just moved it for a better look and it all started to fall apart it either encountered restrictions and ripped the new joints or was thin enough that it burst. They had two options one fix the damage or hook the bypass heart pump back. The pump that was just used wouldve taken to long and the repair was quicker and his blood pressure dropped to nothing. So his brain was not getting any blood flow. They packed his body and head with ice to cool it down to help buy some time of how long the brain could survive without bloodflow. We've been told two different stories that it was anywhere from 10-20 mins and thats way longer than the brain could expect to not have permanent damage. Normal medical thinking is just a few mins.
In this time frame they were loosing blood and giving as quickly as they could hook up the bags and pump it in to him. All the extra blood caused a flooding of his lungs and they filled up with fluid and blood. Once the Aortic Arch was repaired they put him on a machine that is called ECMO. It puts oxygen into the blood and pumps it in the body so the heart can be stopped and recover from the trauma and since Brycens lungs were filled with fluid the ECMO did the lungs job also. They are letting the heart pump about 20-30% and the ECMO do the rest this is until the lungs drain and recover and can function. Then they will let the heart and lungs do a little more at a time.
This is were we are at in Brycen's world. For those that have been through something like this bless you for thoose who havent and think "like i did" there is no way i could deal with all that. God is the only answer!!!! He will give you the strength and peace to conquer anything. Some of my family take my calmness and level headed attitude as non-caring but the fact is that i have given Brycen to Jesus Christ and He is the one in conrtol i have left it in His hands. I pray and ask God for His Will to be done. He knows I want my son healed but if its not what his will or plan is it's not going to happen and when i let God have complete control and i accept anything that he allows to happen HE WILL BRING ME THROUGH THIS AND HE WILL ALLOW GREAT THINGS TO RESULT FROM ALL OF THIS!!!!
I know this was lengthy post and sort of a medicial learning experience but for those of you who took the time and care enough to want to read it through and i hope you are blessed and maybe encoraged to face things and trust in God and believe in him for everything you need.
Please remember Brycen in your prayers along with the our family and the family that has let my son live another day.
Thanks
Ben
 
Update for today

Brycen has progressed very well today they performed a one time test of his lungs and heart by turning off the heart lung machine "ecmo". Everything was great. Once his chest is closed up and drainage tubes are out they will take him completely off ecmo. He also had a ultrasound of his brain and it show no swelling or blood laying on the brain.
Even though he is in total sedation his blood pressure spikes whenever he hears mine or nikki's voices. He has moved his arms and legs and they had to give him more morphine. Even after that his Nana was telling him bye and he tried to roll over. This is a good sign of some brain function. He is have a CT scan tomorrow and then a EEG and that should give as much of a idea if there is any damage to his brain from no bloodflow. When his Aortic Arch ruptured in surgery.
All in all he is doing well we have to give it time. I thank God for what all he has done and thank him for what he is going to do.
Thanks to everyone that has taken the time to keep him in prayer.
 
Our pastor and church remembers Brycen from months ago.Today we prayed for all the familys. It went well.
 
Good things from God

A update on Brycen for today looks promising. He is being prepared to have the ecmo machine removed. *His heart and lungs will operate at full capacity on their own.*
Maybe as soon as tomorrow he will have his chest closed and the drain tubes taken out of his chest. Once they are removed they will bring him out of his sedition and we will get the chance to see how his brain function is and if any major damage was done in surgery.*
 
Thank you for the updates. Keep them coming.

You all continue to be in my and my families prayers.

Thank God for the miracle he WILL perform for your son, and it WILL happen!
 
Brycen

Just to give everyone a update on Brycen: *not much has changed in the last day or 2. He is still being slowly brought off if the pain meds so he is still not very alert. He will open his eyes for a short while and look around but then he's back asleep. He has been doing good with his heart rate and blood pressure and they plan on taking him off his breathing machine today. They have been giving him very little formula maybe a ounce a day the rest is IV feeds. They plan to increase that starting today also. His isn't as swelled as yesterday so that is good that his body is getting rid of all the retained fluid. Thanks for all the prayers and continue to pray for him.*
 
im sorry to hear you have had to deal with all this. its horrible thing for someone to deal with.

i am glad he is getting better, and i will pray he continues to get better, and that he will be fully healed, and grow to have a normal live when he gets older.
 
Thanks for updating... I've found myself wondering/think about your son and situation often. I'm amazed by your acceptance of allowing God's will to be as He may without question. I can't even imagine being in your situation and yet you continue to have the correct attitude about it even though it'd be so easy to have self pity and question why these things happen. God bless you.


Prayers and best wishes for you, Brycen and your family.


Respectfully
Mitch
 
Glad to hear he is doing ok. I almost lost my daughter when she was born so I know a little of what your going threw. Keep the faith and everything will work out.
 
Brycen update

To give everyone a update on Brycen.
He has done very good this week with his new heart. He has been off of all pain meds and completely alert and playing and being as nosey as ever. He is into everything!!!
In the last couple days he has ate better than before his surgery and hopefully will catch up to where he is supposed to be wgt wise for his age. He might get to come home this weekend or Monday if they can get his rejection meds to the level his body is able to deal with. His transplant surgeon came on his last day before moving out of state to a new job and he held him and said as he was almost in tears. he is not here because of what he done but he is a miracle from God. I pray I never get relaxed in my thankfulness everyday to god for what he has done and given me.
 
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