Saturday, October 10, 2009


We're sitting on a comfortable couch, sipping some wine after a good dinner prepared by Joakim, and both kids are sleeping. And we're not at Children's, and we're not at home.
We decided to sneak away for the weekend! We went up to Silverthorne today, and the plan is to stay until Monday. It's great to breathe some mountain air and get a change of scenery. We left the snow behind us in Denver, and exchanged it with sun from a clear blue mountain sky.
We hit the pools and hot tubs at our time share in Breckenridge this afternoon, and then we just hang out in the condo. Very relaxing, and beautiful mountain views...
Joakim and I both go through periods of time where we simply get nervous to be so far away from home with Jacob. We know how quickly his status can change...but somewhere deep inside we also need to live. We need to sometimes take a chance, and do the things we truly enjoy. This is one of those moments where you have to take that risk despite a little bit of a chill when you feel suctioning is increasing after having been in the pool or Jacob having more movements and one short spell (could very well have been another oculogyrical crisis) tonight before he went to bed.
Jacob got released from the PICU on Thursday. The protocol was different this time. They released him as soon as he didn't need the Versed drip any longer despite blood culture and influenza results being pending. They wanted him out of there as soon as they possible could due to all the illnesses floating around. We now know everything was negative, so it was the right decision.
I feel a bit better about Sarah not being able to visit Children's for over half a year even if it's going to be difficult for us as a family (just the thought of it happening over Christmas). We had good conversations with several of the nurses and doctors about this hard decision that Children's had to make. It's of course in the benefit for kids like Jacob. I have lost count of the times he has gotten sick from being in the hospital.
The fact is that Children's is already really close to full capacity, and we're only in October. On Tuesday when Jacob came in with ambulance, they had 300 patients in the ER during the night shift. 75 patients is the typical number for a night shift in the ER. It was sort of lucky that we came in via ambulance, and could get straight to the trauma unit. They all told me that Jacob would have been brought back right away no matter what, but it still worries me. I do know of a little girl with mitochondrial disorder who had a temperature of 106 (!) who were asked to wait in the waiting room, so you never know...
Jacob's neurologist told us that they had lost 3 kids to H1N1 last week - all patients of the neurology department. They all were kids with complex neurological background like Jacob. She also couldn't stress the importance to keep Jacob on the "chubby" side. All kids who passed away were undernurtured. Every time we're in the hospital, the nutrionist wants to decrease his calorie intake, and every time Dr. E is overruling the decision. We're in good hands.
We're also going to try a new medication that hopefully can prevent the oculogyrical crises. We're going to have to work on finding the right dosage, look for side effects, and balance it with his movement disorders. There is no doctor I would rather like to work with than Dr. C in this case. You simply call her on her cell phone every day, and simply modify the dose and talk through any issues. She is a very smart woman, another person that we're forever thankful we have met. First and foremost for Jacob, but she's excellent for us all as a family. I had lunch with her in the hospital the other day. How many doctors do you do that with? She is very personal.
So, the plan is to come back from our moutain retreat some time Monday. I truly, truly hope we won't have a change of plan. On Tuesday, I'll go up to Keystone again for a speech to the Prestige Miracle Foundation and the real estate agencies involved. They want me to talk about what it has meant to us to have been able to do hippo and warm water therapy for Jacob with the grant they gave us.
Jill - the caringbridge picture of you and Jacob will be displayed for everybody!
Soon, it's time for some mountain air sleep! I always enjoy that.
Good night, Maria.
P.S. We had Belinda take some pictures of us again. She posted a few on her blog:

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