Hope

Wyatt was born on August 6, 2012.  He surprised us 4 weeks early but we were thankful to learn that he passed all of his newborn screening tests with flying colors and that everything was just fine!  He had 10 fingers and 10 toes and was a beautiful baby boy with a head full of hair and big blue eyes!

Just 2 days after Wyatt was born we were discharged from the hospital and went home to start our new life as a family of 3.  Things were going smoothly- well as smoothly as life could go with a newborn!  We were just starting to get things figured out- or so we thought.  When Wyatt was 5 weeks old we noticed that he wasn’t moving his arms and legs anymore.  He was no longer fighting diaper changes or scratching his face with his little fingernails.  Realizing quickly that something was wrong we scheduled a doctor’s appointment for the following day.  On Saturday, September 15th we were admitted to The Children’s Hospital in Macon where Wyatt would soon go through a number of tests including a spinal tap, MRI, and muscle biopsy, and genetic blood testing.  On Sunday, September 16th we were told to look up Spinal Muscular Atrophy because it was on the list of possible things causing Wyatt’s sudden floppiness and they wanted us to be prepared.  As soon as we looked it up we pretty much knew that’s what Wyatt had.  All of the symptoms fit.  On top of that all of the other tests and procedures came back with normal results- a blessing and a curse.  We knew that meant one thing, as the blood test for SMA was the last thing to come back.  On Wednesday, September 26th, 2012 our lives changed forever when Wyatt was officially diagnosed with Spinal Muscular Atrophy- type 1- the most severe and aggressive for of SMA.  You can read more about SMA here.   On October 8th, Wyatt had a G-tube surgically placed in his stomach as well as a Nissen procedure done to help prevent the reflux caused by using the bipap and cough assist machines Wyatt would need to stay healthy respiratory wise.  At that time, Wyatt was beginning to choke a little when nursing and the doctors were afraid he would aspirate and then get aspiration pneumonia.  Losing the ability to swallow is just one of the many things SMA robs from our children.  After his surgery, Wyatt failed extubation twice over the course of the next long and overwhelming 3 weeks.  Finally, on Monday October 22nd Wyatt was successfully extubated on his 3rd attempt.  He was extubated directly to a BiPap machine which provides bi-level positive pressure to help him with proper ventilation.  We were able to get Wyatt extubated because we were finally able to follow the “SMA extubation protocol” correctly because we had all of the needed equipment with proper settings.  One very important piece of the puzzle was finding a mask for Wyatt’s bipap that would fit him.  They make masks for teeny tiny neonate babies, and they make masks for older infants, but there were none that seemed to fit Wyatt.  We learned that this is a common problem and were directed to order a Bubble Mask from Canada, as they are not approved here in the US and therefore not covered by insurance.  These masks are not cheap and we were fortunate to be able to purchase one.  This is what inspired us to create Wyatt’s Wish - you can learn more about that here!    

Currently, Wyatt uses his bipap to sleep at night and during the day for his nap.  We also use a Cough Assist device, which pushes in air and then rapidly sucks it out- mimicking a cough, CPT (Chest PT), and a suction machine.  We do breathing treatments with these things 3 times a day when healthy- but they would increase to every 2-4 hours should Wyatt get sick.  These devices allow us to manage Wyatt’s secretions and to keep his lungs clear and healthy!   

Currently, Wyatt is doing very well!  Knock on wood- but he has not been sick at all which we consider a huge answer to an ongoing prayer.  We have many people ask us if he is “better”... it’s a tricky question to answer because Wyatt will not get “better” per se without a cure or treatment.  But, he is happy and healthy and thriving on a daily basis!  We are so blessed to live this life with Wyatt- he certainly guides the way and we eagerly follow his direction!