After Declan’s cardiac arrest, followed by successful hookup to TandemHeart Life Support, he came back to his room in the CVICU. He seemed to rest well due to his sedation. Here’s a snippet from my private blog that I posted of the aftermath where he developed a brain bleed.
Leading up to today, of course, Declan keeps us on a roller coaster. Declan was supposed to rest on life support until Tuesday (today) however in true Declan fashion, he decided yesterday needed to be that day. Why? Because he developed a brain bleed and needed to come off of heparin (a blood thinner) and you can’t be on life support without a blood thinner as the risk of clots is too great.
So again, before Colby knew it, the room filled with a ton of people and Dr. Shillingford was there asap. He successfully removed the clips from the shunt that were keeping it closed and Declan successfully came off life support. Dr. Shillingford explained that it is common for babies to have brain bleeds as newborns because the tissues are so delicate and that most people don’t even know, so he isn’t overly concerned.
He remained mostly stable yesterday except he developed a blood clot in his right femoral artery from the cath lab procedure, but his right leg is still getting blood flow, though his foot is blue/purple. They’re continuing to monitor that. His brain bleed is stable so they started him on a low dose of heparin today to help with the clot and hope his brain doesn’t begin to bleed again.
Today he remains stable. Due to his ventilator, his right lung partially collapsed. His sats still look great though, so they will likely take him off his pace maker tomorrow.
I hear we will reach a point where machines start leaving the room. We haven’t gotten there yet, but it was at least good to see the life support machine leave.
We’re hoping they will be able to remove the catheters from his chest and close him up on Thursday. Tiny strides… that’s what we’re going for.
Today was really sweet though. I went to the hospital after my routine physical appointment and when he heard my voice, he got so excited. He was heavily sedated, breathing tub down his throat and all, and he started squirming, wiggling his feet and trying to look around for me. It was so precious. He was so drugged he was trying to make eye contact with me but it was hard for him to keep the eye contact. He squeezed my finger a bunch and just seemed very happy to hear my voice. It’s another moment I will never forget. He doesn’t yet know my face, but he knows my voice. He’s been listening to it from inside my belly since he was able to hear. <3
To give you some perspective on the size of Declan’s brain bleed, my mom made this to the exact measurements. The blue ribbon represents the size of Declan’s head circumference (not brain circumference). The bread is the size of the bleed inside of his little brain. My hand is in there for perspective.
Have you ever wondered what it takes to keep a heart baby alive after surgery? Here’s a glimpse. We are forever grateful to the wonderful people who selflessly give of themselves day in and day out to give the best care they can to our little boy and others like him.