When another heart mom mentioned yesterday the exact number of minutes her heart child had been on cardiac bypass, it reminded me again that I really needed to get a copy of Bodie's medical records. The request for records at CHLA requires the patient's medical ID number. As I rifled through Bodie's medical files in search of that number, I came across one of the discharge reports I'd been given. It was actually an interdepartmental report, typically not given to parents, used when transferring patients from one department to another (say, from the cticu to the step-down unit, or vice versa). In any case, I had somehow landed a copy of the report for whatever reason. I've scanned it many times, but this morning, when I read it again, something caught my eye that had not before. In describing Bodie's condition when he was rushed from the step-down unit back to the cticu from what we later discovered was c-diff, the term "near extremis" was used multiple times in the report. I didn't know what the term met, so I looked it up. Turns out "in extremis" is a latin phrase meaning "at the point of death."
Gulp. I know how serious Bodie's condition is, I know how bad he looked at that exact point in time (I was sitting in the room 3 feet away from him as the medical team was rushing around, trying to decide if he could wait until he got down to the cticu or if they needed to intubate right then and there) and I know how much of a miracle it is that he's still here with us. I often casually mention the three times "we almost lost him." But, I don't know, it's just different to read in black and white a medical professional's opinion that Bodie was almost at the point of death. It quite literally took my breath away.
What a contrast that dark time a year ago is to the amazingly full of life son I have now - the one who was all ready for our picnic at the park yesterday, where he crawled through the grass with a huge grin of wonder and chased birds...
...the one who ate 4 or 5 helpings of mama's dinner last night, all the while shoveling it in and saying "more, more" with this goofy grin...
Today, reflecting upon that report, I am reminded again how very blessed we are. Praise God for the miracles he has given to our son. We pray for many, many more. Thank you all for your part in praying for these miracles.
Amy, I have had the same experience and I'm so grateful for the beautiful way in which you are able to express these thoughts. For me: the words, "vitals not compatible with life" hit me very hard. Those were the words used to describe my child hours after her birth. She is doing fine now! Praise God. Thank you for sharing your family's journey in this blog.ReplyDelete
I have read Jake's reports and had the same feelings reading about how bad he was at times. I remember reading about how they "Brought him back" when he coded shortly after birth. And after his Glenn reading about the hole that was punctured in the back of his heart and seeing the how difficult it was to stop the bleeding. It just makes you realize how miraculous our babies truly are. Love you and your miracle!ReplyDelete
I feel the same way when I read through those old medical reports on Logan. It definitely makes the sunshine feel a whole lot warmer on your skin, the sky seems to be the brightest blue you've ever seen and your child's smile is the most beautiful thing you have ever laid your eyes on. It is a bittersweet feeling when you know how very close to death you've been a and that you are STILL standing!ReplyDelete
Hi my name is Britney and I'm a good friend of Jean-Marie and Liam. I am actually in a pediatric echo course and was wondering if I could talk to you about a project i'm doing on HLHS my email is firstname.lastname@example.orgReplyDelete
thanks and love your blog :)
Hi, I was your Cedars NICU nurse. Every time I come visit your blog and I see a pic of him I cry. Thank you for sharing and inspiring me to do better each day.ReplyDelete