Sitting in Ben's room here at the end of day nine. It is a bit surreal. Today was a rocky day, but right now everything is quiet and the music is playing "Some children see him lily white," that gentle carol. Our nearly naked, light skinned, tube-infested son is lying exposed to the world on his hospital bed, but what we see is our beautiful Benjamin.
In an effort to figure out why his O2 levels won't stay up in his blood, they did an echocardiogram to look for fluid build-up and problems with blood flow. While they were doing the test, Ben started to say it hurt, and then he went into a sort of convulsive episode. It was very scary. The nurse called a "code" and the room was immediately full of doctors and nurses. At this point Ben was on the BiPAP, and his O2 dropped quickly.
I don't think there's anything more frightening to a parent than to be in the room when a code is called on their kid!
So the result of this scary episode was that Ben was immediately had the breathing tube put back in. They rushed him to CT scan because, as they explained later, he was symptomatic of a pulmonary embolism (clot in the lung). Fortunately they did not find one of those. They also did a quick scan of the brain which also was OK.
The doctors are noticeably puzzled about the oxygen saturation. For tonight they are keeping him on the breathing machine and pretty much asleep. We hope that tomorrow he will improved from the rest and/or the doctors will have discovered some other potential causes for the O2 deficiency.
After a very sleepless night for Kim and a short night for Jon, today has been long. One advantage, though, of Ben being on the breather is that we can hopefully get a good night's rest too. Kim had a nap and shower at Ronald McDonald House this afternoon while Jon made a trip back to Elgin to stop by the office, give Noah and Lydia a hug, and repack suitcases. Thank you to mom and dad S for helping keep things running at home, and for being with us right after the code episode.
We pray for God's powerful and miraculous hand of healing to brush over Ben during this night. Thanks for joining us in that prayer.
My prayers are certainly with you all ...
ReplyDeleteJon-Your post is heart wrenching. I'm so sorry you, Kim, and mostly Ben are going through all of this. It brings to mind the years I spent working in pediatric oncology...the codes called on my patients...the parents looking on horrified and helpless. Even though I was not a parent yet, I could somewhat imagine what the event was doing to the parents. My love and prayers are with you all today. May God hold Ben in his loving arms as his body fights to heal and recover.
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