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September 9, 2003

I apologize for the delay in updating the website, but the past seven weeks have been very difficult for Meghan and our entire family.  In mid-July, Meghan suffered a catastrophic seizure that was nearly fatal.  

The seizure was very sudden and was not triggered by any unusual activity.  When the seizure started, Ellen called 911 and the ambulance took Meghan to Oakwood Hospital.  The emergency room physicians could not control the seizure—in fact it got worse as more medicines were used.  For the fourth time, the air ambulance (Life Flight) was called to airlift Meghan to the Pediatric ICU at Mott Hospital.

The PICU doctors and neurologists aggressively tried to stop the seizures with heavy doses of approximately 6 seizure medications, but could not.  Because Meghan did not respond to any of the seizure medications and was seizing for over 24 hours, the neurologists put her into a “pentobarbital coma” which basically shut down all of her brain waves.  Their hope was shut off her brain waves (and seizure) and to “reboot” her brain, much like you would a computer when it locks up.  After one week in this drug-induced coma, the pentobarbital was weaned and Meghan once again started seizing. 

The options to stop the seizure were running out, so the neurologists chose to put Meghan into an “anesthesia coma” which is a last resort for drug resistant seizures.  For 24 hours, Meghan was in an anesthesia coma with an anesthesiologist by her side for the duration.  Unfortunately, when she came out of this coma, she started seizing once again.  Through those 10 days, Meghan gained an enormous amount of weight.  Most of that weight was water, which bloated her face so much we hardly recognized her.  Meghan looked as sick as she was.   She had up to 9 IV lines going into a three-lumen central venous line in her thigh. 

Around the time of the anesthesia coma, the neurologists and PICU doctors called us into a meeting—a meeting that is every parent’s nightmare.  They explained that because of the extent of the seizure, “it would take a miracle” to pull her out of this.  We were devastated and called both of our families into see Meghan.  We all prayed, hugged and cried at Meghan’s bedside—we were calling on God for yet another miracle to pull Meghan through.

After intense prayer and many tears, Meghan’s seizure started to subside.  During the next several weeks, she continued to “twitch” but overall the seizure slowed.  To keep the seizure from reoccurring, she started a regimen of seizure medicines so enormous that it would render a 250-pound man unconscious and unable to breathe.  The plan is to keep her on these high levels for several weeks and slowly back off on her doses to a point that it will keep her from seizing, but allow her to become more alert.  During her last 10 days in the PICU, she developed a blood infection and was put on very high doses of antibiotics.  

After four weeks in the PICU, weeks of seizure activity, 12 different medicines, a blood transfusion, two “drug induced” comas, 2 CT scans, 14 days of EEG testing, approximately 120 needle pokes, 40-50 blood tests, a severe blood infection, 4 antibiotic treatments, two separate central lines into major veins, many rosaries, novenas and prayers, Meghan was determined to be stable enough to move to the Stable Vent Unit. 

For the next two weeks following PICU, Meghan never really regained consciousness.  Her eyes would open for long stretches, but would not track and did not seem to focus.  She cannot move her arms or legs, but occasionally moves her head from side to side.  We are hoping that as the seizure meds are reduced, she will begin to gain strength and begin to heal her fragile body. 

Before being released from the hospital, the doctors repeated the EEG test to make sure the seizures were still under control and performed a MRI test of Meghan’s brain.  The EEG was satisfactory with relatively little abnormalities, but the MRI was not so pleasant.  The MRI showed moderate differences from the original MRI that was done back in April.  The neurologists said that there is no way to tell right now what kind of problems can/will result from this abnormality, but again, we are counting on God’s blessing to heal Meghan completely.

Meghan returned home on September 3rd and is doing about the same as when she was in the Stable Vent Unit.  She still sleeps a lot and her home nursing service has resumed.  The nursing schedule still has many holes that we are hoping the nursing agency fills.  We are asking anyone that knows a pediatric nurse with tracheotomy and ventilator training that is willing to pick up a day/night shift per week to email us.  We can give them the information to get signed up with the nursing agency and start working with Meghan.

These days at home are much more stressful than our previous return home.  Every twitch, shake, irregular movement, alarm from her ventilator or other equipment puts us on high alert for fear of a new seizure.  Meghan also has had additional respiratory concerns that cause unexpected loss of blood oxygen levels.  These new stresses and concerns bring a new meaning to “Living life one day at a time.”  We can also see clearly that each day is a gift from God.

Meghan has a long recovery ahead of her and many, many people praying for her complete recovery.  Please take a moment to pray for her healing and ask your family, friends, and co-workers to pray for her.  We feel God’s presence when we are holding her and know that He is helping us cope and guiding us during these tremendously tough times.  Thank you all for your cards, flowers, prayers, calls, visits, meals, and help.  God bless you.

Mike and Ellen Salter

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