Saturday, November 16, 2013


It is Saturday evening on the 9th floor of Children's Hospital. Jacob is getting his respiratory treatments for the night, and his nurse is preparing his evening medications. I have settled in the armchair with a cup of tea and pretzels. I am listening to Malena Ernman's new Christmas CD "I decembertid" on Spotify.

We landed in the ER mid day today due to Jacob's colitis acting up over the last couple of days. Yesterday was a long day of countless diapers, stool replacement, and dirty laundry. GI also started Jacob back on steroids last night. We were hoping with the steroids on board, we could make it at home until Monday when Jacob would see his GI doc. This morning we woke up to stool mixed with blood. By 9 am Jacob had already pooped out 0,5 liter of stool. We suspected Jacob's tummy needing a break from his formula. IV fluids is one thing we don't have at home.

This stay sure brings back memories from last year. Jacob spent the whole month of November last year with colitis in the hospital. We sure hope this will be a quicker stay. We are definitely ahead of the game knowing what we are dealing with, we have a good stool replacement plan in place, and steroids are on board. What we don't know is how long it is going to take for Jacob's gut to tolerate feeds again, and how furious his colitis will be this time. Patience is in my future.

This is Jacob's 4th hospital stay in 2,5 months time. It is not a good track record, so I am gearing up for another stay at Children's. This is what I have to remind myself of.

1. Stay calm and carry on. A hospital stay always means operating on little to no sleep and being an advocate for Jacob around the clock. There are so many little details to Jacob's care we have to relay to the medical team changing every 12 hours. Being "on" around the clock can be very tiring and sometimes frustrating especially when you have done it for days and weeks. I will have to blow off steam when my cup is full. Tonight during shift change, the new day nurse gave report and said that Jacob doesn't move and he doesn't do much. It hurt a little bit to see how she views Jacob, but then I had to remind myself that she is not in my house when we do craft days with his friends and she doesn't know that Jacob's plan for the day was to go for a bike ride with his friend. Stay calm and carry on. Don't take it personal.

2. Don't sweat the small stuff. It is easy to get stressed about work and other things you are supposed to take care of when you are suddenly inpatient. With the number of times we are inpatient, we just can't put Sarah's and our lives on hold unfortunately. Work still needs to happen, homework and volleyball practices have to happen. I try to balance getting it done with giving myself just a little slack knowing my number one priority is to get our boy home again.

3. Accept a helping hand. It takes a village. It is so true, especially when we are living between the hospital and home. I have learned over the years to say yes to help. I know I won't have time to cook or go to the grocery store. If someone wants to do something fun with Sarah, it will be a great distraction for her while I am with Jacob. Coffee, chocolate, and dear friends can make all the difference in the world. They can turn a not so good day to a better day in no time.

4. Take care of yourself. I know what I need to do to stay "mentally strong" when Jacob is fighting. I know that an early morning run around the hospital will put me in the right mode for the day, I know taking a shower no matter how tired I am will make me feel better, drinking my morning coffee is absolutely crucial. Joakim and I always take turns sleeping in the hospital, and the night at home is sacred. There is no other time I appreciate my own bed as much as when I can trade it for the hospital couch. The night at home also gives me a chance to reconnect with Sarah, and that is probably the one thing that charges my batteries more than anything.

5. Take care of my boy. As the medical team is figuring out what is going on with our boy, and Jacob is fighting off another virus, seizures, or another flare up of colitis, my boy is my number one priority. I will lay with him in bed for hours, I will read to him, we will watch movies together or listen to music. Sometimes I just tell him stories. I will make sure to give him his bed bath, and make sure I give his stiff body a massage. I will get him up in his wheel chair as soon as he has the strength to sit up again no matter how many cords are attached to him. The PICU staff know that about me :- And for the ones who want to get to know Jacob outside the hospital walls just a little bit, I will tell them about Jacob's friends, Jacob already being deep into Christmas crafts, him actually being a pretty bossy boy as soon as he is in control of his talker, him loving a date at Starbuck's, and Jacob recently riding a bike for the first time. For the inpatient medical staff who always see Jacob at his worst, I think it is important for them to also see the other sides of his life. For them to understand why we want Jacob to keep fighting the good fight.

What do you do to gear up for a hospital stay?

Love, Maria.


  1. Sorry to hear about this hospital stay. Will pray that it is brief and that those caring for Jacob will be able to determine what is causing Jacob's "gut" problems and treat it effectively. You are a strong family and I admire your strength, positive attitude, and most of all being an advocate for Jacob 24/7. Sending a big Hug to you!

    1. Thank you Linda once again! You are always encouraging me! Love, Maria.