Micah’s Story

Micah Paul Marshall was born on June 2, 2008 and he was perfect in every way. It wasn’t until he was 2 months old that the doctor noticed something wasn’t quite right. Micah wasn’t as wiggly as most 2 month olds. We went to a neurologist and was diagnosed with congenital myopathy, which basically just means he had weak muscles. So we started a rigid physical therapy routine and Micah seemed to be improving. Then at 5 months old Micah stopped breathing and turned blue while sitting in my lap one night. After checking to see if he was choking he began to cry and regain some color. We watched him for a few minutes which seemed like hours and then decided to take him to the ER because he never recovered completely.

At the ER we learned that he had a collapsed right lung and more going on then we even knew. Micah was transported to Cottage Hospital in Santa Barbara and spent a month in the Pediatric ICU where he was diagnosed and treated for Spinal Muscular Atrophy(SMA). SMA is a terminal neurological disorder which is degenerative and there is NO CURE, YET! SMA affects the ability to eat, breathe, smile, swallow, hold and turn your head, move your arms legs, sit up and roll over. Most SMA babies won’t live to see their first birthday but even fewer live till their second. A common cold could kill a SMA child.

Micah came home with a hospital room full of machines and tubes to support his everyday functions. Here are the machines and a brief description of each.

Bi pap machine is a machine that uses pressure to expand the lungs and help keep his lungs open. It also helps him rest because it is stressful for him to try to breathe on his own. He can be off as long as he can tolerate it but we don’t push it. We usually do 3 times a day off for 1 to 3 hours at a time. Once in the morning, again at 2ish in the afternoon and again in the evening, or all the time if he is having difficulty. The machine has 2 filters, one cleaned monthly and one weekly. The mask needs to be cleaned every time we take it off, and the humidifier needs to be cleaned and replaced daily.

Suction: when ever it is needed, part of Micah's disease affects his ability to swallow and has to be watched closely because he could aspirate and cause more problems. The tip, tubes and canister need to be rinsed daily and disinfected weekly. The battery needs to be charged every couple of days.

Feeding: Micah had a feeding tube surgically placed in his abdomen and this is how he eats. During the surgery he also had part of his stomach wrapped around his esophagus so he cannot spit up and aspirate. Feedings are at 10am, 1pm, 4pm, and 7pm with a continuous feed throughout the night from 10pm to 7am. Before each feed I must flush the tube and this is also how I give his meds am and pm, and after the feed I must flush the tube. Feeding bags are changed daily and rinsed between feeds.

CPT: The vest machine, Cough Assist machine. Chest physiotherapy is done 2 times daily. We start with a nebulizer treatment of Xopenex, and then he gets suctioned. Next is the vest treatment, then he gets suctioned. Last are the cough assist treatment and more suctioning. There is an electric percussor and I have rubber manual percussor if the previous things do not get the job done. I also work on positioning with Micah sitting up and on his belly to loosen up the junk in his lungs and work it out.

Micah has a pulse-oximeter which tells us how well his lungs are oxygenating his blood and his heart rate, I usually only use at night of if he falls asleep off his Bi pap.

We have an oxygen concentrator, and oxygen. We haven't had to use the oxygen yet, knock on wood. Bath time is getting hard we have no fancy things to help and Micah man is getting big, 31 lbs and 34 inches, hard to lift in and out of a bath tub. He loves bath time he can move his legs a little bit and his arms well. Lately he has a new trick in the tub, he grabs a play cup and bangs it on the side of the tub and smiles or looks at me like “Did you just see what I did, Mom?”

Micah is now a 14 month old happy boy. We have gotten a medical grade stroller to accommodate all of his machines so we can do outings. He laughs and smiles all the time. He talks with coos and grunts and he is learning to make choices with his eye movements. We still do physical therapy once a week to push his range of motion and work on new positions and strengthen what little muscle he has. Right now he does well off the Bi pap for about 3-4 hours but definitely needs the help. He does not lift or turn his head, move his legs or roll over, but he does move his feet and arms. He has lost a lot of strength in his swallow and tongue and lower jaw, and we have noticed he is loosing his smile on one side too.

Micah loves to be outside; he loves his brother and running around the house to chase him. Yes we chase brother and play hide and seek with him. Micah laughs so hard. He is getting used to sitting up a little more often now and he has just learned how to blow raspberries. It is hard for him. But our life is getting more normal, what ever that is, and enjoyable. It has been very hard to learn to live to enjoy the day at hand and not be upset and wonder when Micah is going to die, but if we focus on here and now life is manageable with lots of prayer. Micah is an amazing child and we are so blessed to have him. We know he is an angel put here by God for us to love and enjoy and take care of to the best of our ability.

Thank you all so very much for all your support and prayer and love. God is amazing and we have no idea how long he plans to let us keep Micah but we will do our best to enjoy every minute of it, good or bad, easy or difficult!!!