Ryan

 Ryan was diagnosed with Spinal Muscular Atrophy (SMA), a disease that affects the muscles used for activities such as crawling, walking, head and neck control, and swallowing. Ryan has had several complications, including a double hip surgery.  

Below is an interview with Ryan's father, Jonathon.

Briefly describe Ryan's diagnosis.

Spinal Muscular Atrophy (SMA), the number one genetic killer of kids under the age of 2 years, is an often fatal disease that destroys the nerves controlling voluntary muscle movement.  SMA does not affect sensation and intellectual ability, so while Ryan is very physically challenged, he is a very bright and interactive young boy.

Who has provided Ryan's care at Phoenix Children's Hospital?

Dr.'s Paul Stillwell and James Woodward, PCH, are pulmonologists who are instrumental to Ryan's ongoing overall special medical care team. While at PCH, some of the standout medical care has been with Dr. Tellez  in the PICU and Dr. Ryan Bode as well as Dr. Tressia Shaw.  Also, Jeni Rogers, Child Life Therapist, is fantastic!

What are Ryan's favorite hobbies and/or activities?

Ryan loves being a 2nd grader, and hanging out with his Canine Companion, JAVA, a 2-year-old yellow lab.  He is active in the Cub Scouts, has lots of friends, and especially enjoys playing monopoly and swimming with his big brother Ethan. Ryan is a huge Jonas Brother's fan, going to movies, and spinning doughnuts in his Koala (power wheelchair).  He really looks forward to Halloween, and this year wants to be Indiana Jones driving a 4-wheel Jeep.

How has his injury/illness/disease affected Ryan's life?

Ryan needs 24 hour care-giver support for his daily needs of feeding, grooming, and even playing.  Now at age 7 1/2, he more often thinks about differences in his life compared to his friends who are running, jumping, and throwing things.  There are many cool things that he can do, and mom and dad stay focused on living his life to the fullest.  Ryan has been able to enjoy some amazing experiences through our wonderful community of support, including meeting various local celebrities, special access to events, and things like Hummer off-road rides.

How often is Ryan treated at Phoenix Children's?

Ryan comes to Phoenix Children's Hospital for emergency services.  For children with SMA, unfortunately this can happen often – about every six months or so for Ryan.  Sometimes it is just a late night check and a prescription for antibiotics, and a few times it results in being admitted.

Two years ago, what started as a cold that Ryan couldn't kick, resulted in an ambulance ride to Phoenix Children's Hospital and admission to the Pediatric Intensive Care Unit.  During this 18 day stay, Ryan bounced between the Intensive Care Unit and the Respiratory floor.  He was feeling so bad, that he had trouble eating – which is particularly bad for any child, and especially for kids with SMA.  He was losing valuable pounds that he couldn't afford to give up, and we eventually had to make the decision to put a nasal feeding tube in to get calories in the kid. 

Thankfully, once he became more stable he began eating through his mouth again.  Although he was discharged with the feeding tube in, we were able to remove it a few days after coming home – in time for his 5th birthday.

But the biggest scare during this hospital stay was that he stopped breathing twice.  Ironically, to help him breathe, a night-time "bi-pap" machine was introduced into his routine. This is basically a small pump that pushes and sucks air through a mask over his nose which helps his lungs work more efficiently.  As we were all getting used to the new machine, a mucous plug blocked his airway. It's hard to imagine a scarier image than your child's eyes rolling back into his head, and his lips turning blue right in front of you. 

The PCH team acted quickly, and got the airway cleared and Ryan breathing again.  We all thought it was a fluke, but then five days later it happened again.  Within 30 seconds, it seemed like half the hospital was in his room, and again we found ourselves in the Intensive Care Unit.  Now we all are sure to check his airway before the bi-pap is put on each night, and it has thankfully not happened again. 

Ryan was recently at PCH over the summer, this time for a double-hip surgery.  Everything went smoothly, and he was discharged after a couple of days – but then re-admitted a few days later because the pain had become intolerable and his eating began to slow down again.  The skilled PCH team helped us configure a pain management routine, and temporarily put in another nasal feeding tube.  Ryan was mad, and wouldn't even say goodnight to mom and dad.  But the next morning, he agreed to a big pancake breakfast and the feeding tube came out for good.  Now, he's back to his old self. 

What is your favorite thing about the service offered at Phoenix Children's?

Something that may often go unnoticed, but is a huge deal for children, is the expert skill of the IV team at PCH.  Everyone hates to get poked, and sadly Ryan expects it every time he goes to PCH.  His thin veins present real challenges, and thankfully PCH has a tremendous team of pediatric IV experts that can not only poke him successfully the first time, but know how to keep it flushed and clean so that it doesn't have to be redone during his stay.

What is the most difficult aspect of being hospitalized or the treatment?

One of the biggest challenges is space.  Ryan has a lot of specialized medical equipment that we bring to the hospital during his stays so his treatments can be maintained.  The current expansion project happening at PCH will help a lot!  It will allow the majority of the rooms to be for a single occupant.  Currently, when Ryan goes to PCH for these extended stays, there are two children in the rooms at night… which means two families, and two kids worth of stuff and teams.  It's a lot of constant activity in tight quarters – it'll be great when the expansion is completed!

Has it affected your day-to-day life?  If so, how?

Fact of life, Ryan has lots of appointments and can get sick more often than a typical kid. We all just have to go with the flow of the day.

What does the care you’ve received at Phoenix Children’s mean to you and your family?

Like most families with a special needs child, we connect with others throughout the U.S. to support each other.  We know first hand how important and fortunate our community is to have a pediatric specialty hospital like PCH, that is truly world-class, here in Phoenix.  It's a tremendous benefit for our community that doesn't exist in most other parts of the U.S. – and we all need to do what we can to support it.  Parents, Grandparents, everyone connected to children should rest easier knowing that PCH is here and ready to help when needed!

Is there something that Ryan's illness/injury/disease has changed in your philosophy of life or how you look at things?

Live life to the fullest, even though that life may be short.

Do you listen to KMLE Country 108? If so, is there a favorite country song and/or on-air personality?

Jonathan does listen to KMLE often on his commute home from work… "Big Shoe" Stu takes me home.