Saturday, September 12, 2009


We are having a pretty good weekend after all, camping out on the 8th floor at Children’s hospital once again. Today was the first true fall day in Denver, so it was ok to be inside all day. Sarah and Joakim also went to the movies to get out and get a little break.
We have been doing fall crafts that we picked up from the playroom today, but were surprised that crafts are only for patients now, not siblings. I understand that we are all trying to cut corners, but this has sort of been a life-saver for Sarah as she never gets to stay in the play room due to her brother always being in isolation. We had to let them know that the crafts were for her brother, and could leave again with a few frames and door hangers. We do have plenty of them at home by now…all colors and themes you can think of.

I got my first Starbuck’s pumpkin spice latte for the season today. It sure is early, but it sure tasted good again! I am so happy there are still a few months before the holidays are around the corner, but a season coffee drink still works in September.

Last night, our friends Sonja, Joel and Simon brought dinner, and we all sat in the cafeteria and had a home cocked meal. It was a nice break, and we didn’t miss huddling around the little hospital bedside table all three of us for dinner. Tonight we did have dinner around the bedside table, Karla’s home made meat sauce with spaghetti. Very yummy!

The diagnosis is set - Jacob has a simple cold. The doctor had a big smile when she announced that we can discontinue Vancomycin due to him not having a bacterial infection this time. The DFA was positive, and he has a simple cold?! It’s definitely good news, but at the same time is it truly good news that we do need the hospital for a cold? Jacob has been running fevers for days now, having a nasty cough, and the suctioning…yes, the suctioning is back in full swing. When I’m in the hospital I let the nurses suction out his nose. It makes him so mad, and I am thinking they can be the bad guys for a few days. It will soon be my turn again when we’re all home again.

We did discuss H1N1 with Dr. E. yesterday. The vaccine will be available end of October. Jacob needs to get it the minute it’s out. He’s also not leaving the hospital this time without getting the regular flu shot. Children’s also decided this past week that “the most fragile kids of the fragile” will be put on Tamaflu to help them until the vaccine is available. Jacob is no surprise on that list, so we’re not allowed to leave the hospital without a prescription for that. We also talked about isolating Jacob and to what degree. Dr. E. doesn’t believe in full isolation, it’s simply not possible, which I agree with her. She wants us to balance bringing him to “germy” places with Jacob living his life. That’s why she’s such a good doctor. She does want to hold off starting school though until suctioning is under control. Well, I think we have no choice or our dear nurse Shannon will go crazy in the classroom. It’s also hard for Jacob to enjoy school when you’re prodding a yankauer in the mouth every 10 minutes.
As I write this tonight I feel calmness. Maybe it's the fall in the air. I feel for the first time in some time that we can do this. It sucks to be in the hospital, really, don't think I have changed my mind on that point, but being in the hospital doesn't completely put our family to a stop. We know how we can do this, and still be a family. Joakim and I share in this life of living between the hospital and home. Sarah knows how to find her pleasures in our second home. You should have seen her face when she saw that they had stocked up the fridge with chocolate milk again. She knows how to enjoy the small pleasures in life, like me enjoying my pumpkin spice latte...

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