Tuesday, February 23, 2016


As I went grocery shopping over the weekend, I bought lots of vegetables. Our vegetables always go bad when we're in the hospital, since no one has time to cook. I was hopeful Jacob was on the mend, if not perfect, and was hoping to get back into the daily routine of cooking dinner. We also got caught up on laundry from the hospital stay and a few days of skiing (which was a great break). I knew this week was going to be busy with lots of work, doctors appointments and a medi-port surgery scheduled for Jacob on Thursday. I knew I was not going to catch much sleep until I knew the outcome of the surgery.

Since Jacob got home from the hospital last Wednesday, he was looking better but not perfect. He had days he slept more than normal, he had an elevated heart rate some nights indicating pain, and his stomach was still distended. Since we had an appointment with hematology Monday, GI had asked them to check a level of lipase (indicating pancreatitis) to make sure it was trending downwards. When the hematologist came back in with lab results, he told us Jacob's blood levels are good to go for surgery. He did add that we probably should call GI before going back home, since he had an all time high lipase level...

GI decided to admit Jacob for gut rest once again. They wanted us to go to the ER, since the 9th floor was completely full. Jacob's hematologist didn't want to hear the word ER, and instead placed him in the infusion center and ordered fluids and medications. The care and attention of the oncology nurses were amazing. I definitely felt we got the hospitality suite this time. That the oncology nurse was able to also access the malfunctioning medi-port on the first try gave her a gold star in my book.

Jacob does look better tonight after been on IV fluids for 24 hours. We also have a plan with GI. They are concerned that Jacob might have developed chronic pancreatitis. They are doing another lab study, and if it's positive, we will need a CT scan of his pancreas. If the pancreas looks fine despite elevated lipase, they are concerned that Jacob has developed ulcers in his stomach. To rule this out, we would need an endoscopy which would happen at the same time as the medi-port surgery.

The Surgery Team knows Jacob is here. We have not yet gotten the green light that surgery is on for Thursday. GI gave them the green light, but it is ultimately up to the Surgeon if he is comfortable performing the surgery with Jacob being sick. We should know tomorrow for sure.

I am exhausted. We're on week three of being in and out of the hospital. We're trying to keep up the normalcy of life but it's getting harder after three weeks. I also know this hospital stay won't be a quick in and out. It's not just a little virus we're dealing with. The GI doctor spoke the dreaded words"chronic pancreatitis" this afternoon. It took us almost three years to get a good handle of Jacob's ulcerative colitis due to his underlying mitochondrial disease. I feel we're entering yet a GI monster with his pancreas not feeling well. And it really hurts to see our boy in pain. He is such a tough cookie, but pancreatitis hurts. The oncology nurses are used to manage pain aggressively. They were astonished by Jacob's ability to tolerate pain yesterday.

There is always a little bright light. My sleep deprivation and exhaustion have taken the edge of my worry for Jacob's upcoming surgery. It's there, but it doesn't consume me.

Tonight, we're hoping for some sleep. Tomorrow, we hope we get the green light for surgery. As much as we dread this surgery, we know Jacob needs a new medi-port.

Love from the 9th floor,

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