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Jonas's Updates
Tuesday, January 31 8:30pm
Posted 21 hours agoThe painful intestinal condition Jonas has is called Neutropenic Typhlitis. You can read more about it here:
http://emedicine.medscape.com/article/183791-overview#1
In a nutshell, his entire large intestine is inflamed and infected. The prescription for care is complete bowel rest. No food by mouth. No food by g-tube. He will be getting all of his nutrition (what little he can) by iv. The less work the bowel has to do, the sooner it can repair itself. At this time there is no need for surgery. Whew. This is still a very serious and delicate situation. It could take days or weeks to get under control. Although it is a very critical condition for a pediatric chemo patient, they feel we've caught it early enough to be confident about his recovery. He has not been in this much pain since he first was hospitalized with cancer and I wish there was more we could do to hasten his recovery.
Thank you for all of your warm words of comfort and offers to be of help. Right now I can't even think of what that might be. For the time being, Jonas primarily needs rest. It hurts him to sit or stand, to lay on his back or to contract his muscles. Once he starts to feel better, I know he would love some company.
- - I was interrupted during writing this by his evening CA (nurse's assistant). I'll paraphrase. She said she was our CA last night but we had all gone to sleep so she didn't get to meet us. She wanted us to know how much she LOVES this boy. He was in such pain last night but was still so full of thank yous and I'm sorrys and helpful behavior...and she wanted us to know what a great kid we have. She went on and on. "My all-time favorite patient! " she said. I had to agree.
It reminds me of an anecdote I have told the kids for years. When you squeeze an orange or put pressure on an orange, you get orange juice out. You don't get apple juice or milk or tea. You can only get out what is there inside. It's the same with people. When the pressure is on, what comes out is whatever is inside. If you have stored up anger and hatred, that's what comes out. If you have stored up kindness and good will, calm and perseverance that's what comes out. No one is perfect, and we are all a combination of our best attributes and our flaws. But if I had to witness what I know about Jonas, his character through this so far says it all.Send a message
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