We are still in the PICU with Samantha (2 weeks and 3 days for those who are counting). A couple of days ago they tried weaning Sam's vent rate down, and each time they tried, her CO2 levels went up. At this time the doctors do not feel comfortable trying to remove the breathing tube. Val and I have therefore made the decision to go ahead with the trach surgery. The trach will give Samantha a ton more freedom that she has now, and will hopefully free up some energy that she had been using to fight to breath for the last month or so.
Currently Sam is an "add on" tomorrow and the schedule is light. We assume the surgery will happen at some point tomorrow, we just are not sure what time.
Once the surgery is complete we will need to spend another 7 days in the PICU followed by another 5-7 weeks in a step-down unit, learning all of the things we will need to learn in order to take home a child with a trach. Val and I are hopeful that our overachieving selves will become comfortable with trach care in no time, so that we can all be home again.
We never know what the future holds. Although Sam needs the trach now, there is always a possibility she may not in the future, depending on how things go with her trial drug.
In the meantime, we will continue to laugh and smile and play with our adorable little girl. Her uncle Richie had her smiling and "Raising the Roof" today with her arms, despite still being on some generous narcotics.
Thank you again to everyone who has been so kind to us during this difficult time.
Until next time,