Wednesday, February 10, 2016


Today was one of those days when shit hits the fan. Literally. I had a boy who desperately needed to poop. His tummy looked like a big nasty balloon. He needed oxygen to breathe due to his enormous stomach. I had a girl in tears from having a high fever, a sore throat, a nose that constantly needed a Kleenex, and three tests on the schedule today. I had a training at 8 am sharp, and needed to consult GI, settle carpool for the day, and get some food and Ibuprofen into Sarah before getting into the mode of training a group of new hires.

As I was on the phone, I could see a call coming in from Children's. When the GI doctor heard Jacob had trouble breathing because of his enormous stomach, there was no more talk about going for an x-ray. The destination was the Emergency Room. The ER typically means a ticket to a bed at Children's, so it's never the answer I want to hear. At the same time, I do know when it's time to pack the bags.

Jacob's nurse Ana and I are a good team getting Jacob out of the house. Today we had a little snag. We couldn't get Jacob downstairs without him literally pooping all over himself, Ana & myself, the floor, the stairs, the stair lift, the walls. There is no joke when this starts. Once in a while we have a visitor in the house when Jacob has one of his explosions, and people simply don't know what to do. We simply didn't know where to start cleaning today. Between Sarah, Ana and myself, we cleaned up round 1. Just for me to lift Jacob up again, and we were back to square one again. We all needed a shower, but the ER just felt a little more urgent. After round 2 was cleaned up, we couldn't do anything but laugh. Nurse Ana wondering "will we be able to get Jacob downstairs to his wheelchair today???" With a big chuck pad shoved into my jeans I was determined to get Jacob down the stairs, poop or no poop, and we made it!

With a slightly less distended stomach, but now a boy on his way to dehydration, we did feel the urgency to get to the ER. To this day, I am not sure what the magical word is but Jacob always has a straight line to the trauma unit as he enters the ED. Today I was happy about that as both the parking lot and the waiting room were crowded. After lots of labs, x-rays, IV fluids and steroids on board, we got the verdict that Jacob has pancreatitis. It's supposed to be really painful. Jacob again surprises me with his extreme resilience and toughness through pure pain. The big balloon stomach was also explained as an ileus (disruptions caused by the failure of peristalsis), hopefully not a bowel obstruction. It is apparently really hard to distinguish between the two on an x-ray. A bowel obstruction requires surgery, something no one wants to put in the same sentence as Jacob. They are fairly confident it's an ileus with Jacob still stooling and having bowel sounds. Let's send some positive thoughts and prayers for an ileus. It sounds like music to my ear compared to bowel obstruction. The treatment for both pancreatitis and ileus are gut rest, so our boy is now on IV fluids to give his stomach some rest. With Jacob perking up a little in the ER, we could avoid the word P-I-C-U and go straight to the 9th floor. A little victory in the middle of medical crisis.

We're on Jacob time once again. We're hoping the gut rest will help him to improve as quickly as he can. I'm so happy we took him in today. I love when my mother instinct is right. This is one of those times, we truly needed Children's and their expertise. Not tomorrow, today. I also simply love Jacob's GI nurse. We were today told that the antibiotics Jacob is on for his stomach can't be ordered from Children's pharmacy. Instead, we needed Jacob's outpatient doctor to prescribe it, call it in, and us bringing it to Children's. Insane! We only had an hour to get it sorted out before the outpatient pharmacy closed. She pulled her strings with the pharmacy, our insurance and Medicaid - and I am sure she worked late - to get this sorted out. It's not the first time, she's pulling through and doing the right thing for our boy.

In the middle of pancreatitis and ileus, it's easy to forget about our girl Sarah who is also feeling miserable today. It's not easy to have a cold in a house dealing with serious illness. I have to admit I feel like a bad mama almost sending Sarah to school with a fever of 101.2 this morning. Sarah in tears competing with her brother's numerous doctors phone calls, emergency room visits and around the clock care.

On a day like today, I can only say I'm thankful we're two in it. Joakim is tonight still sorting out Jacob's medication list with the inpatient team as I'm getting ready to tuck in our Sarah.

Thanks everyone who have been checking in with us today. On to a new day tomorrow. Love, Maria.


  1. Maria, gosh i know how you feel! It is so hard. You just never know what each day brings....drop everything every time and hurry to the hospital. Jocob receives the best care and that is what matters. Not all parents are like you and some do not one bit care whether or not their child even receives care. You have a little fighter, keep on fighting for him! You are doing a great job. I am with you! Katerina

    1. Katerina, thank you so much! I hope the Cdiff is under control in your home!

  2. Replies
    1. Kathleen, thank you! I hope you had a good visit in Colorado!