Parenting 101

Nothing can ever really prepare you for parenthood. You can read all the books, listen to all the advice, have a great game plan, but in the end nothing prepares you for the twists and turns that come your way. The same can be said for life after transplant. We have great doctors and nurses who are here to support us and answer our questions, but until we get our feet wet and endure a few challenges it is all just guess work. Our most recent challenge - her stomach. We stopped Erin's tube feedings about 8 weeks ago and she has been maintaining her weight great. Unfortunately her stomach was so used to receiving half of her daily calories via tube feeding that it needs to relearn how to process regular food. As a result, Erin has been suffering from major stomach pains due to being backed up. The 'trauma' to her stomach has also caused her blood sugars to rise. After an unsuccessful attempt with Miralax at home, we admitted Erin today to Children's Hospital in Milwaukee for a more aggressive clean out. We will be meeting with a gastroenterologist to develop a maintenance plan so once she is cleaned out she can avoid problems like this in the future. The hardest part about these past two weeks is we saw visions of pre-transplant Erin with so little energy and so much pain that she barely got off the couch. Hopefully this is a lesson we don't have to repeat.


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