Friday, December 11, 2015


This sure was a Children's Hospital week. Every day this week I put my foot in the hospital. Monday afternoon, we ended up in the Emergency Room with a Jacob who didn't feel well. The doctors didn't find any source of infection, so we were sent home again. This is the first time in seven (!) years we didn't get admitted from the Emergency Room. 

Jacob did get a hefty dose of IV steroids in the ER, which made him very jittery! The adrenaline kick made him stay up literally ALL night! That made for a very sleepy boy the following day. He repeated this pattern for two days. I wasn't overly worried about him sleeping so much during the day, since I knew he was up partying with his night nurse at night. We had also been told that his labs indicated a viral infection.

Well, Wednesday night he did sleep all night, but had no desire to wake up. He was extremely lethargic, and we could see he didn't feel well at all. Dr. E. didn't have an opening in Clinic, so it was time to pack the bags and head to the Emergency Room for a second time this week. 

This time we didn't get as lucky...Jacob got admitted yesterday afternoon. The verdict was pneumonia. Antibiotics and IV steroids were started. On Wednesday, Jacob had a neurology appointment. We left the hospital just as the sun started to set and all the Christmas lights were on outside the hospital. It's beautiful with all the colored lights, and it was a warm breeze in the air. I took it all in, and said to Jacob's nurse Ana that I typically never enjoy the lights at Children's, since I always watch them from a hospital room knowing I would like to be home. Well, last night I did just that. I was watching the lights blinking outside in the dark as I was winding down from a very busy day.

Today, Jacob and I started our day a little shy of 5 am. Nothing unusual for our boy. At 6 am, I was the first in line for the coffee shop. At 7 am, I was on a conference call for work. It was then time to do Jacob's morning care and I went for a run around the hospital. It turned out to be a social run today, ran into too many familiar faces around the hospital. That made me smile as I started up my run each time after hugging someone I have gotten to know on our journey. It was then time to sign 20+ Christmas cards for our Family Advisory Holiday lunch, round with Jacob's medical team, and jump in the shower. It was clear on rounds that the team wasn't sure Jacob had a pneumonia. They wanted to continue looking for a source of infection before settling on pneumonia. Joakim and I had the same suspicion. It is always good when we're all on the same page.

For lunch I traded with Joakim, so I could attend the Family Advisory Holiday luncheon and my last meeting as the Council Chair. It's a great group of passionate parents and hospital leadership. Many of us have worked together for years, so it's always so great to see each other. The last meeting of the year, we always stop to celebrate our successes as well as start planning the work for the year ahead. I'm excited about the new parents I get to work with in the new year, and the new Chair I have taken on driving the work around Parents on Committees throughout the hospital. I always find energy in starting up new projects.

And Jacob had a better day! He was more awake today, but he does need his bi-pap to help with breathing throughout the day. He also needs more rest than normal. We also found out this afternoon that Jacob doesn't have pneumonia. He has a confirmed case of the coronavirus. Sarah said immediately "does Jacob have a beer infection?" Well, Jacob is far from Mexican beer tonight, but it feels so good to know what the source of his infection is. Jacob came down with coronavirus during spring break, and his clinical picture is very similar to that time.

Tonight, I would have been happy to simply end up on the couch with my girl. Sarah thought differently, and really wanted to attend the Swedish IKEA Christmas dinner. We ventured down to IKEA with friends, and we had many good laughs and lots of delicious food. The kids cracked up as Camilla and I got deep into our singing, reminiscing Christmases from growing up in Sweden.

Tonight my eyes are hurting from too little sleep, but I'm going to bed with some optimism we can bring our Jacob home in a couple of days.

Until then. Love, Maria.

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