Wednesday, November 20, 2013


After a long busy day yesterday, I went to bed and the word that stuck with me was kindness. It was one of those days when Jacob and I started the day at 4 am, followed by breakfast with a friend, then off to work for a couple of hours, back to the hospital for the care conference, then back in traffic to go and pick up Sarah from her friend's house, squeezed in grocery shopping before dinner. The evening was spent cleaning up a little around the house, doing laundry, get Sarah to bed, answer some e-mails, and then some more work to top off the day. As I crawled in to bed, I realized that in the middle of this crazy busy life I am constantly surrounded by kindness. Friends checking in to see how we're doing all day long, Jacob receiving a new purple poop monster, breakfast, lunch, and dinner delivered to us. Sarah decorating two little Christmas trees at night, one for her and one for Jacob, all delivered in a big Christmas bag from another friend.

The kindness made me feel better about the fact that Jacob will need an endoscopy tomorrow or Friday. We had Jacob's team of GI, primary care, neurology, and metabolic at the table. The attending of the week is the hospital's Chief Quality Officer who also knows us well. Everyone was in favor of Jacob having an endoscopy despite the risk of anesthesia. Noone takes ulcerative colitis lightly. The fact that a full endoscopy has never been performed on Jacob despite multiple flare ups and now two involved hospital stays makes it hard to manage his disease. Jacob is now at a stage where he needs stronger drugs to manage his colitis, none of them come without nasty side effects. Jacob's GI doctor doesn't want to just throw these drugs at Jacob without knowing which one he actually needs and not. It was great to see how they all were thinking about everything from preparing Jacob for the procedure to who would be the best anesthesiologist, and a plan for how to safely do an endoscopy on Jacob. It gives me the chills to even think about the word anesthesia and Jacob in the same sentence. I loved that the CQO picked up on my fear, and he who lives and breathes patient safety at this hospital, felt that Jacob will be doing fine. I sure hope he is right...

We're still waiting to hear if the procedure can happen tomorrow or Friday. We are all hoping it will happen tomorrow, so we are one step closer to treating Jacob's colitis properly and hopefully also a step closer to coming home. Thanksgiving is exactly a week away. We would love to spend that holiday from home this year. If not, Sarah has one request this year. She wants to sleep in the hospital that night, if Jacob is here. She always gives me good perspective.

Keep our boy in your thoughts and prayers in the coming day or two!

Love, Maria.

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