We are close. We are so so close.
He has been “off” of ECMO since 4am. They lowered the sweep down to 0 at 4am and he has been doing well ever since. They check his CO2 every 4 hours to make sure he is tolerating the lack of help.
We have been keeping him mostly sedated but he has woken up a few times and maintained his sats and been doing well.
We will see what the doctors decide tomorrow at 7am rounds of whether they will decannulate or not. The surgeon wants to keep him cannulated for one more day but everyday he is on adds risk. He could have a stroke, bleed or get an infection. There are benefits of keeping him on one more day too. We will see.
All the nurses keep stopping in and saying, “oh, what a big day!!” They make it so fun and make us feel so special. I can’t wait for them to see his personality and a smile! He has the best smile and such sparkly eyes.
We met with pulmonology today for a long time. We talked about him getting a trach and waiting for his genetics testing to came back. It reminded me that I didn’t update you guys on my genetics testing that I got done a few weeks ago. It came back negative that I am a carrier for Maxley’s genetic abnormality. I assumed but good to know if I ever decide to have more kids.
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We will see if tomorrow ends up being a big day or now. Either way, it should be sometime this week!
Since the pump will be gone soon, I thought I would include some pictures of it so you guys can see it. Maybe I will explain more about it another time. You can see the tubes of blood going in and out of his right neck.
I see some people found how to comment on my posts. You can comment by clicking on the date of the post you want to comment on. Make sure when it asks for your name you put first and last so I know who you are. You could also say how I might know you or how you heard my story next to your name. That info will save if you check the box so I will always remember. I wish I could remember everyone and how they knew me but I am so thankful for so many people reading my story, that I just can’t keep up with who everyone is.
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Looking for more ways to help?
You guys might have noticed in my pictures recently but, I received this adorable taggie blanket from someone and everyone here at the hospital LOVES it. I thought I would post it here in case anyone wanted to donate them here to the Cardiovascular unit for a baby going through what Maxley is going through.
#CHD Awareness Tag Blanket Lovey by Baby Jack
Mail to:
Children’s Hospital Minneapolis
C/O: Paul Paulisich/ CVICU
2525 Chicago Ave
Minneapolis, MN 55404