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November 5, 2003

There are several updates regarding Meghan this month.  She has hit an important milestone—her first birthday!  She has also paid another visit to the emergency room and PICU, and plans are in the work for a very important trip.

Meghan’s first birthday party that we dubbed “A Celebration of Life” was an unbelievable success.  The party was sponsored by Make-A-Wish Foundation, which did a fabulous job planning, organizing, and executing “A Celebration of Life”.  We want to thank Joy DeFranco and all the people at Make-A-Wish for their unbelievable support with this event.  Thank you to all that helped out with party and to those that came to help us celebrate.  To see pictures of the party, click on Photo Gallery First Birthday Party and scroll through the pictures to see the fun had by all!

Ironically, during Meghan’s “A Celebration of Life” party, Meghan seemed to coming down with some bug—she was having trouble breathing, her heart rate was accelerated, and she began to have swelling in different areas of her body.  The condition continued through the weekend and on Monday the Pulmonary doctor asked us to take her into emergency.  He then informed us that those symptoms usually mean severe cardiac issues.  Of course, we were petrified, as Meghan’s heart has been the only major organ unaffected since her medical conditions started.   

When we arrived at the U of M emergency room, they started running tests.  Meghan was panicked and looked as though she was having a seizure—fortunately, it wasn’t.  She was then admitted to the PICU for observation.   Dr. Wright quickly looked at the X-ray, her EKG, and felt her major organs.  Much to our relief, she said that she is very confident that her heart is just fine!  After further observation and testing, they determined that Meghan’s ventilator settings needed to be adjusted, which was causing all of Meghan’s recent problems.  She had not been getting enough air to fully expand her lungs, while not fully exhaling—thus keeping too much carbon dioxide on board.  Soon after her vent settings were changed, her heart rate regulated, her CO2 levels normalized and her bloating dissipated.   She was released from the PICU four days after she arrived and has been home since.

Meghan has had slight improvements since her last update.  Unless you spent each day with her, you might not even notice these improvements.  For example, she moved her foot purposefully (not a spasm); she recently began to move her eyeballs slightly, whereas she had not done that since her July seizure; she continues to turn her head toward the sound of our voices.  We hope for, but do not anticipate any major improvements until the seizure medicines are reduced.

The big news to report this update is Meghan’s upcoming trip to Mayo Clinic in Rochester, Minnesota.  Ellen and I need to make sure we are giving Meghan every chance to fight this inexplicable and on-going medical condition.  All of the U of M neurologists point to Mayo as the best chance to diagnose what is going on.  They are the leaders in pediatric peripheral nerve conditions.  There is a tremendous amount of planning involved in this trip.  Meghan will be taking a life flight (medical flight complete with a staff of ICU nurses and a respiration therapist).   We will be at Mayo for the week of November 17th, so please keep Meghan in your prayers that week.  I will update the website as soon as we return from Mayo.

God bless you!

Mike and Ellen

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