Meghan's Journey

"Sustain me according to thy word, that I may live; and do not let me be ashamed of my hope." Psalm 119:116

Hope. We all have hopes and dreams. Some of our hopes are simple - making it to work on time in rush-hour traffic. Other hopes are more complex - the end to inner-city crime or food for all those who hunger. Life is filled with both disappointments and joy. During the difficult times, it is hope which sustains.

Meghan Marie Salter came into the world on October 16, 2002. The daughter of Mike and Ellen and sister to Lauren, Michael and Shannon. Meghan was born healthy with no apparent health problems. For the first three weeks, she ate, grew, slept, and did everything a healthy, happy baby would do. Then her health started to change during the second week of November.

Through all the ups and downs of Meghan's medical challenges, the Salter family had hope. Meghan does not move her arms or legs. When she wakes from a long sleep, she will stretch her back. She also can move her head from side to side. Meghan's smile, however, lights up the room.

Meghan is a daughter, granddaughter, sister, niece and friend. Meghan's life has immeasurable value not only to those around her, but also because she is a precious and irreplaceable individual. Meghan's future is unclear - in reality, everyone's future is uncertain, but as members of the human family we have a responsibility to care and love each other.

The Salter family members are wonderful examples of compassion, love and hope. Mike and Ellen, through their love and care for Meghan, have lived a life of compassion for Lauren, Michael and Shannon to witness and from which to learn prolife values. Meghan's brother and sisters will take turns picking out her outfits, brushing her hair and caring for her. When the family is playing a board game, Meghan is included with others taking her turn for her. Meghan's room is literally the family room in the house. She is the center of activity and included in everything.

Mike and Ellen said, "We couldn't think of having her anywhere else."

Because of Meghan's condition, the Salter family has a tremendous amount of family time together. Mike now works from home; this arrangement allows him to assist with Meghan's care. The whole family participates in helping Meghan. Mike and Ellen have explained to Lauren, Michael and Shannon that Meghan is a gift from God, a treasure to be cherished.

Mike and Ellen said, "Meghan is special, we have been chosen by God to care for her."

Caring for Meghan is not easy. Stress is common and some days are better than others. But each day God provides the grace needed. Light follows the dark days. The Salter family knows they need to be faithful to their family and protect and guard Meghan to keep her safe. Caring for Meghan is a community event. Many nurses participate by taking shifts at the Salter home, and the Salters' church has provided meals for more than two years.

The question has been posed to the Salter family: "Wouldn't it be better to let Meghan go to God? Then you could move on with your life."

Ellen said, "We have changed our life completely. Meghan is our life and caring for her is not a sacrifice. Meghan is a blessing."

The Salter family reflects the reality of the sanctity of all human life. There is a duty for the strong to defend the weak. We must make the choice to respect all human life - no exceptions.

Meghan's redemptive suffering brings deep inner peace and spiritual joy. It is because of their faith that the Salter family has hope. Through it all, Meghan continues to inspire all who are close to her with her perpetual courage, toughness and resiliency.

Please continue reading some of the details of Meghan's Journey and be blessed and inspired.

Meghan's Journey

Meghan started to lose weight. In the weeks to follow, she lost interest in eating, she became very colicky and made many trips to the pediatrician. Many tests were performed: blood tests, urine tests, x-rays, a CAT scan and many other tests. All preliminary testing came back normal. A CAT scan ruled out problems with the brain. A pediatric neurologist thoroughly examined Meghan; the doctors were convinced that Meghan had Spinal Muscular Atrophy, a fatal childhood disease.

The Salter family had hope.

The Spinal Muscular Atrophy results took a grueling two weeks to come back, but after thousands of prayers, Meghan's first miracle occurred. The Spinal Muscular Atrophy test results came back negative. The Salter family was overjoyed and thanked God for His goodness. In the following weeks, Meghan started to slightly move again.

A neurologist concluded that since Meghan had moved at birth, then became nearly paralyzed, only to start moving again, she must have had an inflammatory condition called Guillian Barre' Syndrome.

In mid-February 2003, Meghan suddenly and inexplicably stopped breathing. The 911 operator taught Mike infant CPR over the phone which he administered until the ambulance arrived. Meghan was flown via helicopter to Mott's Children Hospital at the University of Michigan Medical Center. While in ICU, a new range of tests was conducted. Some of the new tests were to determine if there were chromosomal deficiencies, enzyme deficiencies, amino acid deficiencies, West Nile Virus, autoimmune abnormalities and various other rare disorders. All tests continued to come back negative.

The Salter family had hope.

Meghan was released from Mott's Children Hospital with an apnea/heart monitor so the Salters would know if she stopped breathing. Six days after arriving home, Meghan stopped breathing during what looked like a seizure. She was taken by helicopter to Mott's Children Hospital. The seizure could not be explained by doctors.

Another trip home turned into another helicopter transport to Mott's. Tests showed that the apnea events were not seizures at all. Specialists determined that she had a condition called Laringo Malecia. This condition renders a person unable to breathe because of a suddenly collapsed airway. A tracheotomy provided Meghan with a much needed way to breathe. On April 30, 2003, Meghan received a P.E.G. G-Tube. The tube is surgically placed directly through her abdominal skin into the stomach. This allowed feedings to be easier.

Through all of this Mike and Ellen journal that, "Meghan has helped those around her to refocus their lives on what is truly important - God, family and loving your fellow neighbor."

In July 2003, Meghan had a seizure. Unfortunately, this was nothing like the seizure spells that were really apnea events; this was a classic seizure which involved body shaking, staring off and non-responsiveness. Meghan had an MRI, several blood draws, the lumbar puncture, new IV lines. The results from the MRI showed no irregularities, and the spinal tap revealed no infection.

The Salter family had hope.

Meghan continued to take baby steps towards her rehabilitation. She was taken off the very expensive, very sophisticated ICU ventilator and began using a home ventilator.

The Salters said, "Through all these challenges, Meghan give us smiles that are worth a million dollars."

May 2003 marked the beginning of the third consecutive month for Meghan at Mott's Children Hospital. The Salters reported that Meghan continues to be alert and happy. Her personality was really starting to develop with plenty of smiles for family members, friends and medical personnel alike.

The Mott's doctors gave the discharge orders for Meghan on June 4, 2003. Everything was set for discharge. The Salters completed needed training, the home modifications were completed, the nurses were scheduled, and Meghan was doing pretty well.

Mike and Ellen wrote, "Meghan will arrive home to a happy bunch of kids. Lauren, Michael and Shannon have been so good during these long, stressful days. They have endured tons of emotional swings, long durations without their parents and being bounced around from place to place while we were at the hospital. I think they will be the happiest kids in Michigan when Meghan finally comes home to stay."

In mid-July 2003, Meghan suffered a catastrophic seizure that was nearly fatal. Meghan was airlifted to the Pediatric ICU at Mott's Children Hospital. The doctors 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 more than 24 hours, the neurologists put her into a pentobarbital coma which basically shut down all of her brain waves. Their hope was to 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 a 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.

The Salters were called into a meeting with the doctors - a meeting which is every parents' nightmare. The doctors explained that because of the extent of the seizure, it would take a miracle to pull her out of this. The extended family was called in to see Meghan. God was called upon for yet another miracle.

After four weeks in the PICU, weeks of seizure activity, 12 different medicines, a blood transfusion, two drug-induced comas, two CT scans, 14 days of EEG testing, approximately 120 needle pokes, 40-50 blood tests, a severe blood infection, four 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 of Mott's Children Hospital.

The Salter family had hope.

Meghan returned home on September 3, 2003. The days at home are much more stressful. Every twitch, shake, irregular movement, alarm from her ventilator or other equipment puts the family 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." The Salters see clearly that each day is a gift from God.

Meghan's first birthday party was dubbed "A Celebration of Life" and was an unbelievable success. The party was sponsored by the Make-A-Wish Foundation.

In November of 2003 the neurology team at the University of Michigan recommended a trip to Mayo Clinic in Rochester, Minnesota. Mayo would provide the highest probability of finding a diagnosis. The time at Mayo was very well organized, very thorough, very professional and very compassionate. A plethora of tests was conducted, three surgeries and teams of specialists probing Meghan for answers to her medical condition.

The Salter family had hope.

Eight weeks later the report from Mayo arrived. The 14-page document summarized that Meghan's diagnosis is beyond medical explanation. Not much has changed regarding Meghan's neurological condition. Meghan still does not move her arms or legs, and she doesn't eat or breathe on her own. When she wakes from a long sleep, she will stretch her back. She also can move her head from side to side, but that is about all. Because of the Salter's faith, the significance of Meghan's redemptive suffering brings deep inner peace and spiritual joy. It is because of their faith that the Salter family has hope.

Through it all, Meghan continues to inspire all who are close to her with her perpetual courage, toughness and resiliency.

The Salter family continues to hope.

[Editor's Note: For more information, visit the Salter family at www.babymeghan.org]

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