April 21, 2003

I hope everyone had a safe and Blessed Easter. Thanks to my sister Liz (who spent Easter Saturday night with Meghan), Ellen and I were able to spend Easter morning with Lauren, Michael, and Shannon—who were delighted to have us with them while they eagerly searched for the their Easter goodies!  Ellen, Lauren, Michael, Shannon and I also enjoyed Church together for the first time this year.

Meghan continued to take baby steps towards her rehabilitation.  She was taken off of the very expensive, very sophisticated ICU ventilator and began using a home ventilator last week (dubbed the “laptop” ventilator because of its compact size).  Although the two vents do essentially the same thing, each vent “feels” different to the person receiving ventilation.   Meghan fought the laptop vent for three days, but finally adjusted to the new feel.  The ICU doctors concurred that Meghan was then ready for her next significant step—out of the ICU.

Meghan was released from the pediatric ICU on Good Friday and sent to the Stable Vent Unit (SVU).  The SVU is a room that beds up to four children that are expected to go home on ventilators.  The SVU has two nurses during the day and one during the midnight shift while the children sleep.  Meghan will remain in the SVU until she is ready to go home in 3 or more weeks.  While there, Ellen and I will continue to receive training in tracheotomy care and home ventilator usage.   We will continue to take alternating 24-hour shifts with Meghan during my leave from work.  This allows us to spend time with all the children.

Physical Therapy (PT) has resumed working with Meghan to help increase muscle tone throughout her body.   The last few days, PT has placed her in the “prone” position (on her tummy), and Meghan loved it!  While on her tummy, she began to lift her head and track her toys, lift the lower part of her legs off of the bed and actually fell asleep that way!  PT is very optimistic that Meghan is progressing, with new muscle groups beginning to work—albeit slowly.  The speech therapist is working on helping Meghan to take her bottle again.  She has some practice ahead of her, but he is confident that Meghan will regain the skill.  Until then, she will have tube feedings to help her grow.

Through all these challenges, Meghan gives us smiles that are worth a million dollars.  The wonderful, beautiful smiles help Ellen and I forget about the long, stressful days and sleepless nights.  Meghan has many months of rehabilitation and some several hurdles ahead of her, so please keep praying for her.   Hopefully, the next Meghan’s Miracles update will bring continued progress.