We learned a lot during the entire pregnancy and duration of Jack’s life. We are still learning a lot. - about ourselves, about God, about how we want to honor and remember Jack’s life. But I want to talk about the copious amounts of medical jargon we learned during Jack’s short life.
We were at the hospital almost every day for morning rounds. 10-15 people would cram into his shared room or gather around the glass door opening to his space. Usually the resident covering the PICU that week would start with “JS is x days/weeks old, with small left sided structures. Post op day x from aortic arch repair and VSD closure…” and so on as they gave report.
I have medical experience. I could usually follow their report with the hundreds of abbreviations. Sometimes Ike would whisper what’s that mean and I’d debate answering and missing something else they said or giving him the wait a sec finger and I would tell him after.
That was a layer to the knowledge.
We’d ask the nurse questions galore. They were always patient. Happy to explain why one day he had this kind of line and the next it changed. We observed and learned the normal rates of all the iv drips he was on. Noticed when they were bumped up or down. Noticed his heart rate monitors, what number ranges were good and what wasn’t. We watched his catheter bag meticulously (especially when he was post op from his second heart surgery when his kidneys never started to work again). We could look at him and tell if he needed more sedation and looked uncomfortable (terrible wretched thing to watch - most nurses were on top of it before we noticed). We could anticipate the nurses next move as they did their various checks throughout the day. Reading the nurses facial expressions to know if we should be worried or not. We became expert detectives in observation, looking for good signs and bad signs. Anything to give us hope or give us cause for concern.
Another layer.
When a surgeon or a doctor or ECMO tech is trying to explain nuances of their specialty to you, phew. You ask question after question, make analogies, and ask for clarification until you can understand. Some were more more skilled at explaining their trade than others. Some could draw better than they could talk so the whiteboard was helpful. We usually left those conversations with many conversations between the two of us debriefing and rehashing what they said - parsing out every detail to determine if it was net positive or net negative.
That’s another layer.
The next piece was our ability to spit that info back out to family, friends, social media updates, etc. Sometimes just having the emotional energy to share was really hard. Sometimes it actually helped me to speak it or type it so that other people could be in it with us. The more you share sometimes, the more questions they will ask and the more medical explaining you will have to do. It was always worth it - we wanted our people informed and praying - but it was not easy.
I can feel for parents of medically complex kids. I know they spend hours explaining their kids medical needs or updates to friends and family regularly. It is exhausting. You are dealing with the hardships first hand and having to digest and relay them to others too.
I felt like our brains never shut off. From the moment we walked into the hospital in the morning to the moment we went to bed, we were processing complex and emotional medical information about our child. That alone felt like trauma sucking the life out of us.
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