Monday, March 30, 2015


Going in to the month of March, I knew it would be a crazy, fun month. We started out the month by having our dear friend Nadia and her girls stay with us before they were moving back to Switzerland. We made dinners together and Nadia taught me how to make the perfect cup of coffee. Jacob and Sarah got to have the girls around, reading bedside stories in Jacob’s room at night. The girls re-introduced Jacob to the movie Frozen. Sarah got to be the big sister playing Barbie with the girls and they spent hours making their own Barbie house out of Jacob’s supply boxes. This was a precious time for all of us before we had to set them off for Europe.

As Nadia and the girls left, Gemma and Gail moved in. It was time for Joakim and I to venture off to San Francisco and for me to present Children’s Hospital’s family engagement strategy from Board to bedside. The presentation was a big deal, and it went really well. At the same time, it was a much needed get away for Joakim and I. We both love San Francisco, and we had a fair amount of time to just explore the city outside of the conference. We loved the park Presidio, which we haven’t had a chance to explore before this stay.

Less than a week after we got home from San Francisco, Joakim’s parents arrived from Sweden. We got a few days together in Denver, and then it was time to pack our bags to go to Breckenridge. The grandparents, Sarah and I went up to our condo in Breckenridge at the same time as Joakim moved in with Jacob to Children’s Hospital. Jacob showed signs of adrenaline insufficiency and tested positive for the corona virus. The corona virus is a simple cold with flu symptoms and diarrhea. It definitely hit our boy hard, and he needed bi-pap to breathe during naps and as he was awake on and off throughout the day as he came home after five days in the hospital. Secretions have also been heavy at times as he is still trying to get over this virus. 

I had wonderful skiing with Sarah. I love spring skiing when you don’t need to worry about being cold. I love that Sarah and I are skiing on the same level these days, and we can plan out our day on what runs to do. One of my favorite moments was enjoying my morning coffee in the hot tub viewing the snow packed mountains.

After a few days of skiing, it was Joakim’s turn to enjoy the mountains and for me to move in to Children’s with Jacob. I exchanged my ski pants for my sweat pants. Luckily, I was able to get Jacob home in time for me to pack my bags to go to Chicago and attend the ICN (ImproveCareNow) conference. This national conference focuses on improving care for children living with IBD (Inflammatory Bowel Disease = Crohn’s and Ulcerative Colitis). Researchers, physicians, nurses, dietitians, and parents all get together to collaborate and learn about IBD. This is the best family engagement I have seen on the national level so far. Parents and physicians are actively collaborating on quality improvements, and this is ICN model in every IBD center in the country. Some are very advance in their family engagement, some are just starting on this journey. No matter where each center is on this journey, there is no one questioning engaging families in every step of the way. It was a very intense conference, but it inspired me a lot in the work I do at Children’s and gave me tons of ideas on how to further this work locally and nationally. 

Throughout all our travel and fun times with family and friends, there was a lot of stress this month. Jacob has had a rough month. His ears have bothered him since the end of February. He has been on different kinds of ear drops on and off for the last month. Add to that a nasty respiratory virus which made Jacob very tired and adrenaline insufficient requiring a hospital stay. I questioned more than once this past month, if it is worth it for us to try to have a “normal” life including travel? Not knowing if we would have nursing support until a few hours before we had to leave for San Francisco, spending the afternoon before travel in urgent care not knowing if Jacob would get hospitalized or not. Not knowing if Jacob would make it out of the hospital before I had to head to Chicago. Stress has a prize, and is it worth all the stress and detailed planning or should we settle on a less stressful life style? I think the answer came to me as I was skiing down one of my favorite runs in Breckenridge. We do need to live, even if it means we always have a plan B and plan C and always knowing that our plans can change because by the end of the day our boy comes first. March was a crazy fun month, our very own March madness. Going in to April, I am equally glad to say that there is no travel on the calendar. 

We're all ready for spring!

Love, Maria.

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