Sunday, March 30, 2014


Spring break 2014 is getting filed as probably the lousiest spring break we have ever had. We started spring break in the PICU, and we're ending spring break in the PICU. It might not matter that much if you don't have plans, but this year we did. Joakim's nephews came all the way from Sweden to spend a week up in Breckenridge with us. We had worked out a nursing schedule, so Joakim and I would spend three whole days together up in the mountains, something that is so very rare for us. Sarah was going to ski and be spoiled rotten by her cousins and having her parents to herself for a few days. Jacob was going to enjoy the spring break from home with nice spring weather, since his seizures don't agree with the high altitude of the mountains. Not much of our plan happened. There was spring in the air, but absolutely no break.

The good news is that we did get home on Thursday, and our boy looked really good! He was definitely weaker than normal, and we knew we were going to take it really easy, but we were home. Here Jacob got some cuddle time with his favorite baby Derek. I had a good feeling about being home again.

We had noticed that Jacob's myoclonus (twitching of his face, mouth, and hands) had started to act up in the hospital. It got a little worse every day. Since it is a movement disorder, and not causing Jacob harm, we typically let it run its' course. With each day, it got a little bit worse, and it started to look really uncomfortable for Jacob. It also makes it hard for Jacob to handle his secretions, since his face is moving constantly.

On Friday, Jacob's heart rate kept being elevated, he needed oxygen to breathe, he had extreme diarrhea, and his face was twitching constantly. Saturday was no better...I had escaped up to the mountains Friday afternoon to spend a little bit of time with Sarah. I missed her terribly during Jacob's hospital stay. She keeps me grounded when Jacob is really sick. This time around, there was no girl at home to keep me balanced. We had a great movie night together Friday night, and we had the best skiing day yesterday. My girl is skiing black runs, and she is faster than me! I knew it was going to happen, and yesterday was the day. I was so proud of her.

Sarah having lunch with her cousins.

As I was getting ready to drive back down to Denver, Gemma texted me to let me know that she thought Jacob had to go in again. He needed bi-pap to breathe, vitals were off, and lots of myoclonus and secretions. I thought if worse comes to worse, I'll drive straight to Children's in my ski clothes. I have come to the ED in wedding party clothes, so ski clothes should work too!

I did made it home, but as I was talking to Dr. C. for the third day in a row about his myoclonus, we decided it was time to bring him in again. She was concerned about how it impacted his breathing. Jacob didn't look great coming in to the ED, and they once again treated him as he had sepsis. He was put on the big gun IV antibiotics, and stress steroids once again.

Today, it doesn't look as if Jacob has a new infection and his labs are good. His vitals are stable as well, so sepsis has been removed from the table. We all think he is having withdrawal from his stress steroids. He was on a heavy dose of hydrocortisone three times per day, and we weaned him off it completely in 3 days time. As we weaned him, the myoclonus slowly increased and got completely out of control as he was off the steroid. His normal steroid for his colitis didn't do a thing to calm his body. We had been told that high heart rate, jittery, and irregular blood pressures were to be expected. The attending today said that we now have to add myoclonus as a possible withdrawal symptom.

The plan for today is to wait for cultures to come back, so we truly can rule out infection and start peeling off the three antibiotics he is on. Tomorrow, endocrinology and GI will be consulted for a very slow and safe steroid weaning plan. Dr. C. will be consulted for his myoclonus once again. We don't have a good sense of how long we will be in the hospital this time, so we are once again on Jacob time.

Goodbye spring break 2014!

Love, Maria.

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