Round One

Round One at St. Louis Children's Hospital is in the books! After a two week hospital stay, we will head 'home' tomorrow to our Ronald McDonald apartment. Erin is doing much better in that she no longer needs oxygen during the day, she is coughing up less mucus and she has spurts of energy. Her lung function went from 24% to 29% and her efforts during physical therapy have been great! However, her appetite and fluid intake are still rather poor and her body feels weak all the time. Weekly doctor appointments and physical therapy 3x per week will be our norm until she gets sick again or an offer comes in. She has officially received at least one offer, but it wasn't a 'good' one, meaning it met a few of the required criteria but nothing worth risking the transplant for. We are constantly reminded that each transplant journey is different, from the waiting period to recovery to warding off rejection, but on average a patient receives an offer a week and about 1 out of every 10 offers is a good one. We we're also reminded through the course of this hospital stay that the stakes are much higher now, there is no rest for the weary (try telling that to a 15 year old diva who likes to sleep until noon!) and we need to continue to push through the pain if we want the best possible outcomes. Helping us along the way is an amazing team of nurses, doctors and specialists, including Nurse Ashley who is originally from Lomira, WI.


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