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juliedobbs

Ecmo

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It is late and I am so tired but I had to update everyone and write down my thoughts before I laid down.
Last night was probably the most scariest day of my life. I never thought that I would have to walk this path and now it is here. His oxygen dropped to 50%. They could not oxygenate him. He was starting to look pale, blue/gray and was just laying there. Everything they tried was not working and the doctors started flowing in the room. I stayed back and patiently watched as the doctors were watching the numbers, the vents, watching him. My mom stood by me and watched too. I knew what was coming. If they couldn't bring his numbers up, and his lungs continued to fail they were going to have to put him on ECMO.
They ordered a head ultrasound because they wanted to make sure there were no brain bleeding. They had to get a base line because one of the risks on ECMO is that it could cause hemorraging.
i had to go pump in the room across the hall and then like a brief second, I heard " ECMO". People started coming in and out of the room, with huge equipment and carts and all. They completely transformed that room into an Operating Room.
Nurses and assistants were in there.
I sat in that room across the hall and just sat there.
Is this for real? Is my baby needing this?
The doctors tried everything else possible. This was the last resort.
The surgery was only supposed to take 2 hours. Instead it took 5. We didn't get much word or update until the end and finally it was over.
One of the nurses came out and told us that apparently there are 2 cannulas that go in the neck. Usually 2 go in the same side of the neck. One in the jugular vein and one in the artery. Apparently, with Bryson he didn't have a artery on the side of the neck. His anatomy was wierd and what he thought was an artery was in actuality the veiin. So, to make matters worse he had to pull it and stop it and start over and when he did, bryson's heart rate dropped down to 60. They didn't have to do chest compressions, but they did have to give him EPI, shot of adrenaline to kind of wake his heart up again. he has one canula on one side of his neck and the other in the other side. Poor baby looks like he has reindeer antlers hanging down from his bedside. HE looks adorable. One is bright red and the other is dark bllue red. The dark blue is the non oxyenated blood, coming out and goes through a pump that acts as the lungs, goes through another machine that acts as the heart and then comes out oxygenated and pumps right back in him. This is all the while his lungs and heart are resting. His lungs are not completely deflated. They are inflated but report this a.m. is that he has some fluid around his lungs. It isn't great news. Also because of the trauma that occured while his heart rate dropped so low, and being so low on oxygen his heart took a big hit. It was absolutely perfect and still is but the cardiologist said it has weakened it. ITs good its resting because its going to need to heal.
The doctors seem confident that this will work.
As soon as he went on this, his profusion started to improve immediately. He started looking pink again, and color came to him. He was wide awake and looking around. He was warm, not cold and his numbers were in the high 98% oxygen and he was only getting low 36% oxygenation. So, something was working. What I wasn't prepared for was that
he is getting used to the sedation and pain meds. He has been on them for 2 weeks now so he is requiring a lot more.They want him looking around, he doesnt look uncomfortable but then other times he makes these faces where it looks like he is going to cry. He has frothy secretions and bubbles that come out of his nose and mouth, and it looks so uncomfortable. They have to constantly suction him. When he is sleeping soundly I am ok. I do better.
But when he is awake, he looks right at me. He follows me and listens to my voice. He looks up at me as if he is saying, " help me mommy." He sometimes even looks like he has this panic look.
The nurses and profusionist in the room continue to assure me that he isn't uncomfortable and he is really ok. But this is my baby and its hard to see him like this no matter what.
Tonight I was in there with him, sitting by his bed. His eyes were wide open looking around. I was talking to him, singing to him. Of course crying.
I was carressing his head and he started falling asleep. His eyes were closed and I had my hand just laying on his head. The moment I pulled my hand of his head and proceeded to walk away, That baby woke up. His eyes opened like he knew that I was going to leave. Later on he was wide awake again and I still was sitting by his bed. I was talking to the profusionist in the room and we were talking about everything. That baby fell asleep. i made the comment that I can't believe he fell asleep to my talking. and they said that it was probably calming for them because he has been hearing my voice for 9 months.
they have him set right now at 80%. I don't know all of the technical reasons or what it all means, but I do know that they said that at about 10 days they will try to wean him. Hopefully by then he can be.
We are praying for a miracle and I have a lot of people praying. God works in mysterious ways and I don't understand it all and I am not going to question right now. I dont have the energy for that. I just need to stay strong for that little boy in there and do what I can for him. One miracle that did happen that God showed up for was that in some babies they don't have a artery or a vein in the neck. They need both for this ECMO. The doctor told us that if that happened where they can't find it that those babies die because there is no other resort. Thank God that they were able to find it and do it. I dont know why in the beginning he didn't need this and now he does. Everyone who we have spoken to has said that he should do very well on this because he has proven that his lungs are strong and functioning. So, because he has pulmonary hypertension they don't know why that has all of a sudden occured, but this is the thing to solve that. IT is a God given machine and we are blessed to have it.
I left tonight at 11 pm. He was sleeping peacefully. lPlease pray for his comfort. For peace to fill his body and that God will just rest his hands on his body and that he will be completely calm.
Also please pray that his pulmonary hypertension will go away and he will be healed completley.
God still can do that.
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Comments

  1. ShellyMoore's Avatar
    All I can say is WOW! Since my daughter was pretty much incapacitated due to a spinal migraine when our Jayden went on ECMO I was the one who remembered the most of the experience and we didn't have even a 10th of what you have been through! We are keeping you all in our thought as you walk through this part of your journey! Many prayers!!! Fight Bryson Fight!!!!

    Grandma to angel Cherub Jayden Gilbert
  2. JadeHunt's Avatar
    Julie,

    I will continue to pray for Bryson and for your strength and courage during this extremely difficult time! I, too do not understand God's ways, but I do know that he is here, even when it doesn't feel as though he is. I wish we were all privy to his plan- I am desparate to be privy to his plan! I pray for Bryson's comfort, strength, and peace. I pray for the continued wisdom and knowledge of his doctors, nurses and other specialists. I pray that God is with you all- that he pulls you all together as a team- Bryson's team!

    God Bless You All!
    With much love,
    Jade
  3. mandymorena's Avatar
    Oh no! so sorry to hear he had to go on ECMO. I was Praying he and you wouldn't have to go thru it. I know it's hard to see him there so helpless. You want to do something for him and really all you can do it sit there. I would talk to Axel a lot. Even his night nurse would talk to him all night. I felt it help letting him know he is loved beyond comprehension. Made him stronger. Even the little kisses i would give his hand since i'm so short i could only reach his hand to kiss. Today marks a year ago Axel was taken off ECMO. Even though we never got to day 10 each day seemed like forever and a day long. All this stress we mothers go thru weighs heavy in ours hearts and souls. I pray for GOD to give your strength and peace in your heart.

    GOD BLESS YA'LL
    CON AMOR
    Amanda, & Axel
  4. MariaFarnsworth's Avatar
    Many, Many Prayers & Positive Thoughts heading your way. May God surround you all with his loving arms. May he provide you with peace, comfort & solace.

    Our Mighty Lion, Liam is watching & Roaring Bryson on.

    God Bless You All,

    Liam's Nonna~Maria
  5. OmarB's Avatar
    We will be praying