Sprengel’s Deformity – Our trip to Shriner’s Portland, OR

Hellooooo! I know that a lot of people follow Drake and his medical-unicorn-ness so I wanted to give an update. When Drake was 7 months old, he was diagnosed with Scimitar Syndrome – PAPVR – a rare congenital heart defect that is paired with a hypoplasic right lung. I will not get into the details. When he was diagnosed we were told he would for sure have to be operated on at some point, but by the Grace of God we are surgery free for now and possibly ever. After an exploratory heart cath in December 2015 and a checkup every 4 months with Pulomonologist and every 6 months EKG and Echo with Cardiologist (both in Tulsa OK I am happy to give you their info! We love them and their teams!!!!!) they tell us his pressures are good and as long as he stays healthy we could possibly be heart surgery free forever!!!!! That’s Jesus you guys! Jesus!

When Drake was 13 months old we noticed his shoulder looked a little higher on the right side and he had a pretty big fall that day. I had a very love/hate relationship with the whole learning to walk phase. We took him to pediatrician then ER and they said nothing was broken but it was very unique up there. Excuse me? Unique? greeeeeeeeat! We went to an orthopedic surgeon and she immediately said, “That’s Sprengels. I’m not touching him, I will refer you!” Well that’s comforting! Drake was officially diagnosed with Sprengel’s Deformity and accepted at Texas Scottish Rite in Dallas and we have been there.. until now. We loved the facility, staff everyone! BUT the Dr we were seeing was not on the same page as we were. We had done our research and were looking at a more modern way of treatment that was being performed world-wide and he was much more traditional. Short version, his right shoulder-blade is smaller, higher and connected at his C4 and C5 and we are wanting him to have the corrective surgery (which is sometimes controversial, although after my research I am not sure why!)

ANYWAY… now that you have the back story.. You’re probably going to think I am insane, but I truly believe that when someone passes that you love dearly they watch over you and can become another one of your guardian angels. My grandmother has been telling me since the day Drake was diagnosed, “You have got to get that baby’s shoulder fixed!!!!” every. single. time. she saw him. I told her I would, that we were looking and hadn’t found the right doctor, he was too young and that we were trying! Well in January she passed after a very long health battle. Now she was a pushy, strong, overbearing, loud woman.. (I think I am much more like her than I realize) and I am not kidding you, we had her funeral and the first day I was home I sat at my computer and something just came over me. I was all of the sudden overwhelmed by the need to find a doctor, make an appointment and get his shoulder fixed… like yesterday! It consumed me for about a week. I had looked and looked for information about someone in the states having performed this surgery successfully at least twice! (Most surgeons say.. Oh I can do it, but no I have not ever completed one myself – No thanks!) As if I had not been looking at all a Facebook group we are a part of had a mom posting pictures of her sons successful surgery at Shriner’s in Portland. Hmm… I look deeper, I found 3 other parents on this page that had been to the same doctor, same hospital! How did I not see this before???? My Mammaw Sandra put it right in front of my face and I called that day! A week later, we had an appointment.

At the end of March we set off on another adventure  to Portland, OR and met with the surgeon who said Drake is an excellent candidate and he is completely on board with surgery! Within the next year we are headed back to Portland! (So if you have airline miles you would like to donate…………………………… 😉  just kidding…, but seriously!) Being there just felt right and the whole place makes my heart happy!

He did see something on his X-Ray in his lower lumbar that was concerning so we will be having an MRI done, here in Arkansas, next week. It will be 3 tests, 2.5 hours long so Drake will have to be put under. Anesthia is a little tricky with 1 functioning lung so he could use extra prayers this day. Also, mom and dad have to sit and watch so prayers for us because we would do anything in the world to trade places with him!

We made is a 3 day family adventure and I have to admit, Portland is a pretty cool area. We stopped by the zoo, experienced public transportation (Drake LOVES the trains!), spent wayyy too much on food because lets be honest, beer and food are kind of our thing. We even made a stop in the Brewery district while Drake was asleep. The waitor came up to us and said they had an overpour of this flight and asked if we wanted it. (free of course) he had no idea it was my birthday!! We definitely needed it. P.S the Donuts at Voodoo Donut… oh. my. delicious! this is the Hibiscus. nom nom nom!  We flew back on my birthday and after a cancelled flight, re-routed to Chicago O’Hare, taking a scared 18 year old under our wing, 2am McDonald’s in a deserted (kinda spooky) airport and 35 total mins sleep between the two of us before our 8:45am flight the next day, we made it home a day and a half later than originally planned. Happy Birthday to me!! LOL

Cherish everyday and make every situation an adventure!!  I will keep you all posted on everything Drake!

Stop worrying, start praying!

Trust God from the bottom of your heart; don’t try to figure everything out on your own. Listen for God’s voice in everything you do, everywhere you go; He is the One who will keep you on track. Proverbs 3:5-6

Cheers!! – Cace


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s