Tuesday, January 13, 2015


Jacob has had a busy 24 hours. Jacob's belly has once again given him some serious trouble. He has been distended for over a week, and had been on antibiotics for bacteria overgrowth. This particular antibiotics didn't do a thing for him. As the days went by, the tummy got larger despite going, and this weekend Jacob was lethargic and seizing. This is something we have seen with tummy issues before.

The fact that Jacob has adrenaline insufficiency makes me really nervous. He gets so very sick, so very fast. All day yesterday, his nurse Shereen monitored him closely. I was on the phone and messaged with Dr. E., his two Dr. Cs in neurology, and his GI doc about him having seizures and being lethargic. His GI doc put a plan in place with outpatient abdominal x-ray, stool sample, and a new course of antibiotics. As I had Jacob all ready to leave, his body temperature had continued to drop and he just didn't look himself one bit. I decided to go south instead of north to the main campus of Children's.

It was a smart move. They initiated their sepsis status on Jacob the minute he rolled into the trauma unit. All kinds of labs were drawn, x-rays were ordered, stool and urine were checked, IV fluids were started as well as 3 different IV antibiotics and IV steroids. They needed more lines than his medi-port to get all the medications in fast enough. At one point I hear his nurse having a fit because the steroids hadn't arrived: "I don't want Flagyl, I want his steroids. The antibiotics won't save his life, the steroids will". After nine years with Jacob, it is still a bit surreal to have Jacob be part of the sepsis protocol. They do a beautiful job in the ED. It is just that you don't want YOUR kid to be the one needing all their attention, but this is how they save lives.

To our surprise, we got a diagnosis right there in the ED. It never happens with Jacob! There are so many possibilities and options and we sometimes never find out why he is so sick. This time, we found out he has pancreatitis. Where did that come from??? After Internal medicine reviewed his labs, they didn't want to call it pancreatitis. His pancreas is inflamed, but they didn't want to give him the actual diagnosis. I don't know how much the pancreas caused Jacob pain, but if it is something that makes Jacob lethargic and seizing these days - it is pain. His belly is still like a big balloon. GI is not sure if we're dealing with the beginning of yet a ulcerative colitis flare up or really bad dis motility. They are leaning towards the latter. He is on IV fluids to give his gut a rest. He is on 3 IV antibiotics and IV steroids to cover him for both.

24 hours into our hospital stay, Jacob actually looks pretty good. He slept most of today, but he perked up when sister came to visit late afternoon. He has been awake since then. His vitals are stable, and something is making him feel better. I still feel we have many unanswered questions.

I am exhausted. I ran off to the hospital yesterday with little to no warning. Joakim packed his bags later, and slept with Jacob in the hospital last night. I went home to my girl. She really took it hard this time. Before I even arrived at the hospital, she had texted me wondering if I had any news. The minute she came home from volleyball practice she asked if she could come and see Jacob today. As she got ready for bed, her tears were rolling down her face. I had to lay with her in bed as she cried herself to sleep. There is nothing she doesn't understand about Jacob's condition, and I could see that she had that unspoken question if this was it for Jacob. I had no answer, since I was asking myself the same question. I knew he was fighting very hard for his life.

Tonight, he looks a ton much better than last night. We're on "Jacob time" now, and he will guide us through this as he has so many times. We are of course always hoping to soon be home under the same roof again, but tonight I'll take that our boy has responded to the medical treatments.

Good night, Maria.

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