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July 14, 2003

The past week has been a busy one for Meghan.  She has had two scheduled trips back to Mott Hospital: one for a G-Tube replacement, the second for her first “Vent Clinic”.

The first appointment was to replace her G-Tube last Monday.  The Mott Surgeon replaced the G-tube with a “Button”.  The Button is a flush mounted port with direct access into Meghan’s stomach.  Now, the feeding tube can be placed right into this port and makes the feeding process much easier.  The procedure went smoothly, but Meghan was in discomfort as a result of the procedure for approximately two days.  Although Meghan is still throwing up often, since this procedure, she seems to throw up less…let’s hope that trend continues.

Meghan’s other appointment at Mott was “Vent Clinic” on Wednesday.  Vent Clinic is a series of doctor appointments with her team of specialists.  Meghan was seen first by her Neurologist, followed by the Pulmonary Doctor, Respiration Therapist, and her Rehab Doctor.  We were told to plan for 2 hours to see the entire team, but the clinic lasted close to five hours!  The doctors made just a few changes.

The Respiration Therapist ran a diagnostic test on Meghan’s breathing ability.  With the test results, she made slight adjustments to Meghan’s ventilator settings.  The Pulmonary doctor approved the settings and wrote them into the nursing orders. 

When asked about any changes in Meghan’s behavior, we told the rehab doctor that Meghan often seems to be in pain.  She determined that it could be stemming from joint or muscle pain, but is more likely to be pain caused by a nerve condition called “dysaesthesia”.  Dysaesthesia is a condition in which the brain falsely interprets touching as pain.  Dysaesthesia is experienced by people who have damaged nerves that are healing from conditions like Guillian Barre’ Syndrome.  For example, Ellen’s soft rubs on Meghan’s face could feel like needles or a burning sensation to Meghan.   The rehab doctor said that there is a new drug that offers some relief from dysaesthesia—so Meghan received yet another drug to her vast arsenal.  Thus far, the jury is still out on whether or not this drug has much effect on her, but in the few days that she has taken it, she does not seem as though she is in as much pain as before the introduction of the drug.

No real updates to report regarding new movements.  We prayerfully hope this will change soon.  As in every update, we implore everyone that reads this to continue to pray for Meghan.  We are praying daily for new miracles…God bless you all.

Love,

Mike and Ellen

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