Tuesday, February 3, 2009


Jacob is still in the hospital, and he should be going home tomorrow - with IV antibiotics for another 8 days. It is not a little thing to get that all put together. The IV antibiotics and the equipment need to be ordered from a specific supplier. It has to be a supplier that takes private insurance due to the enormous cost. We have to get a home care company to come out tomorrow and train us on how to give the antibiotics and care for the line. Jacob is not allowed to come home before that is all squared away. Ironically, Joakim and I will now learn how to give IV antibiotics through the medical port, but none of our nurses are qualified to do so. This means that despite having night nurses, WE will be up at night giving antibiotics on an 8 hour schedule around the clock. It will for sure impact sleep and work schedules. It is interesting what you can do as a mom or a dad...And let me not start on the chapter of home nursing tonight...we sure had our share of absurd stories lately...
We also found out today that they can never say for sure if only the site or also the port are infected. Only time will tell. When Jacob gets off the antibiotics next week, we'll know what it truly was. If he is then healthy, it was "only" a site infection. If he starts running a fever and the area gets swollen the actual port was infected the whole time, and it will go out at that time. I was hoping to start relaxing about this port after today, but I guess until we truly know if the antibiotics have killed the infection or not, we can't completely relax.
We had plans to go to Breckenridge for a long week-end with start on Friday, but his doctor put a stop to it. She feels we need to be close to Children's over the course of the antibiotics as well as right after.
Breathe in, breathe out - one day at a time! Did I tell you that it's that big fighter of a kid that we have that keeps us going, trying to do each new thing that is needed for his care! Jacob is always embracing each new thing with a smile.
- Maria.

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