Where do I begin.. there is so much information. At 7:30am Owen was on the schedule for potential decannulation of the ECMO circuit. The surgical team sat in the hall as the cardiologist, echo tech, ECMO team, intensivists and surgeon were bedside in his room. To help explain I took a few photos. Owen has three cannulas on the ECMO circuit. The blood is pumped through his venous line that is placed in his carotid artery and the blood returns back to the ECMO circuit through his jugular vein. He also has an ECMO cannula placed in his right femoral vein and is placed directly in the left ventricle of his heart which allows decompression of that left vent.
In order to trial off ECMO, we first placed a clamp on the LV line to allow it to work without machine support. We did see some improvement, but nothing significant. The good news is that his hemodynamics (HR, O2 saturations, blood pressures) tolerated it and actually looked really good. We also ran some blood gasses and they looked great. After a few trials of that, we unclamped the LV line and clamped the Venous line. This allowed us to look at the Right Ventricle function and that appeared to be much better. Again, he tolerated is beautifully and his blood gasses looked good.
The question now is how to move forward. Do we remove him off mechanical support and treat heart failure aggressively? Do we remove him from ECMO but continue to support the left ventricle mechanically with a LVAD (Left Ventrical Assist Device)? I think we are all agree that he needs a few more days of full mechanical support until we come up with a plan. We will re-trial then and see if there is even more improvement in his function.
On another note... we can't just look at function when making the decision to remove support. Owen was in a heart failure for several years as a Hypoplast prior to transplant. He required oxygen support and 13 heart failure meds but it sustained him for a few years. So the question is how well he will tolerate being in heart failure. Will his heart recover fully? It is all a big question. We have fully treated him for everything that could possible have caused this acute biopsy negative rejection. Now we just basically watch and wait.
We are adjusting his IV heart medications (Epi, Milrinone) as well. It's just going to take some time to find what works. I had a long chat with the Surgeon and Dr Zangwill (transplant cardio). Realistically we will be treating heart failure and transplant rejection at the same time.
The plan as of now. We will continue on mechanical support (ECMO) for the next couple of days. We currently have all his meds running through the ECMO circuit because his central line occludes so he gets boluses of meds, which is not good. We may be placing another central line today so we can pull that one. Either way.. we all agreed it will be in Owen's best interested to Extubate him today. He will be much more comfortable. The downside is we cannot sedate him as much so keeping him comfortable and pain free with all the ECMO cannulas will be a fine balance. Also, we cannot move too much because those cannulas are placed very carefully into his heart so he will have to hold still.
Prayers for everything moving forwards. We are not 'out of the woods' but we are moving in the right direction. We are in this for the long haul. I have asked if this type of onset acute heart failure could happen again and the answer is absolutely. It is terrifying. I'll update in a bit.. hopefully with a picture of my boy extubated. :)
15 comments:
Oh my sweet superhero I am so thankful to hear you are getting better! Can't wait to hear what you first say when you can talk again!
Saying many prayers for a smooth extubation, Andrea and for things to continue improving for Owen. {{{HUG}}}
Been following your journey. Glad they have a plan and that the first trial went well. Continuing to think of you all.
I am so impressed with the team of Doctors and your ability to explain everything so well and being his special loving advocate.
I'm Praying every spare minute for a miracle of complete and full recovery for our Superhero!
Prayers from MN! You have an amazing team of doctors on your side - and God of course! You are one strong mama - and the best advocate for Sweet Owen. Praying for continued steps in the right direction
Again, I can't thank you enough for the updates and details on sweet Owen. I have followed his journey since shortly after my son was born/diagnosed with a VSD/ASD 5 years ago. We live in the same area and I have seen you all out and about on occasion. I feel like I 'know' him :) I have always thought you are one strong mama bear and do a fantastic job of ensuring Owen gets the best care. The one thing that Owen has definitely proven over the years is that he is a fighter ( and a true super hero, of course). Continued prayers to you all.
Praying for Owen's comfort and that things will continue to improve.
Good job Owen!!! Keep fighting!!! Sending lots of love hugs and prayers❤️
Owen you got this! Positive thoughts and prayers for you everyday! Dr Zangwill came from Childrens Hospital in Wisconsin, he was my grandson's transplant doctor!
Have read your blog for many years and praying hard for Mr. Owen; bless him! Praying for you all as your journey through this time. Thank you for your updates.
Prayers that the removing the tube goes well and that Owen will be so much more comfortable. I pray for you, Andrea. This is a difficult journey and I know you must be exhausted. I am amazed by your strength and fortitude. Owen is blessed to have you as his advocate.
Just starting to follow Owen. I will be keeping him in my prayers. My aunt was on ECMO last year for ARDS so I'm familiar with the mechanics of this machine and decannulation process. Very touchy I know...praying for guidance of the surgical team and peace for your family.
Hope you had an uneventful night and things are still going smoothly! Thinking of Owen and all of you!!
Continued prayers to all of you.
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