This is our half painted pumpkin. Jacob started painting the pumpkin with Sarah exactly a week ago. He got tired mid way through the project, and had to rest for a little bit. Since last Friday, there has not been a single moment to finish painting our purple pumpkin (to raise awareness for epilepsy).
Our half painted pumpkin is a good symbol for how our lives feel right now. Half, not full. Just trying to barely get by each day. Monitoring Jacob's vitals, managing Jacob's seizures and figuring out if he is seizing or not (never an easy task with our boy), watching Jacob's breathing, monitoring Jacob's skin color, trying to fit in all his care in the middle of watching and monitoring a sick boy. Being on the phone with Children's, waiting for a phone call back from one of his doctors, drawing and delivering labs to Children's, being at Children's for daily checkups. Knowing that it is just a matter of time before we have to take Jacob in once again. It can be tonight, it can be tomorrow morning, or any time after that.
The way Jacob looks today, we start to think that his colitis is starting to act up. His poop actually looks ok, but there are so many similar signs from this time last year. He is lethargic, he is seizing, he is sleeping a lot, his tummy is distended, and his heart rate is high. Jacob's GI doc ordered lots of labs and stool samples today. The GI attending knows Jacob will come through the ED any time he gets sicker. We are waiting, and we think tomorrow will be the day that he is either doing better or we will once again look to the doctors at Children's to help us figure out what exactly is going on with our boy and what we need to do next.
Sarah's favorite spot in Jacob's room is on his couch. She loves to hang out on the couch chatting as we're working with Jacob. Tonight as I was getting Jacob ready for bed, Sarah had found her normal spot. "Mom, colitis means a long hospital stay, right?" She is as tired as we are, but she also knows that whatever Jacob needs is what we will do.
At the end of nurse Gemma's schedule for tomorrow, I wrote: we will see where the day takes us today. Jacob is in charge. The one thing I know is that we won't be painting purple pumpkins.