Hello friends and family!
I wanted to follow up after Greg's post last week and share the latest as well as a handful of images.
Oakes is doing OK. He is still paralyzed an sedated. Chest X-rays are taken every morning and so far his lung has made some slight improvements. Yesterday he had a bronch, his bronchus - his airways look open it is just his lower right lung that is so very collapsed. During the bronch, his team gave that lower lobe a saline lavage - think gargling with salt water when you have post nasal drip - the hope is that the saline breaks up the mucus that is likely making that lobe slow to open up. This morning the X-ray looked a bit more hazy than yesterday but it is likely that we just mucked stuff up with the lavage and it will look better tomorrow. We are praying that what we have seen in the last 4 or 5 days is the beginning of a classic Oakes rally. Just a little baby step here and there - slow and steady - keeping everyone on their toes and hopefully in the end blowing everyone away. That is one of the prayers at least.
As soon as Greg's email went out last week, the supportive emails, calls, text, FB messages started rolling in, which we love. Truly, your words of support and encouragement lift us up. Thank you, friends! And of course, as we were reminded how loved we are, we were assured that the prayers were coming in too. I am picturing the vortex moving at a pretty significant speed, with prayers, love, deep breaths, and heart strings being thrown our way from around the globe.
The plan for the week is to keep Oakesie paralyzed and prone for about 18 hours a day. Other than that we are looking for super boring days filled with healing from the heart to the kidneys.
We will share more as the week unfolds.
Isla and Oakes during Mothers Day week.
Quality time with Ena! Ena and Grandpa Dale come to visit nearly every other weekend and this was the first time Ena has seen Oakes awake since his birthday weekend in early March, and the first time she has held him in a LONG time! He looks bigger than she is.
This was the Monday before Memorial Day. Oakesie was doing so great we got down on the floor to play. We brought in a train set from home that Oakes got for Chirstmas and he was captivated by it and Isla.
After playing with the train Isla told me that she wanted to hold Oakes. I don't know where this request came from but I'm so glad we made it happen, there were huge smailes all around.
They are just the sweetest little duo around!
Oakes awake and happy last week during his CT scan. He was smiling and waving at the nurses. For Oakes, anytime is a good time to turn on the charm.
This past Saturday, our friend Dr. Huddleston threw out the first pitch at the Cardinals game here is St. Louis. It was Congenital Heart Defect Awareness night at the stadium, and our friends Dave and Chrissy Butz shared some pretty amazing tickets with us. Oakes wasn't there obviously, but we sent Dr. H a message before the game.
Dr. H is the first person in the line up of people in the center of this image. He has on a jersey and red cap. What an amazing honor for an amazing man! Next to Dr. H is Lena Morsch, she is an adult who has thrived despite being born with a complicated congenital heart defect. Her parents were told that she wouldn't live past the age of 5, so for us she is a symbol of hope. Lena has been following Oakes' story via the blog for some time and she reached out to me recently and shared her story with me. Not only was Lena being honored as Dr. Huddleston's oldest patient on Saturday, but Lena is one of the organizers for the CHD awareness night at the stadium and she shared with me that next year they want Oakes to be on the field for the opening ceremony! As soon as we get him up and moving we are going to have to get his physical therapist to help us with his pitch! So,wether you are a Cardinals fan or a Mighty Oakes fan, plan to be in St. Louis next year for CHD awareness night at Busch stadium! Go Cards, Go Oakes...
One of the posters that I brought.
We spent Memorial Day with Oakes...
....painting our toes. I look forward to the day that Oakes can audibly complain and protest this happening or simply disapprove of me sharing this picture!
Greg and Isla on the way to the car.
And here is the Mighty man, on his belly covered up by a prayer blanket that was sent to us right after he was born. I have no idea who sent this to us. In the craziness that was our lives a year ago I misplaced the card that came with this blanket and I have not forgotten that I owe someone a heart felt thank you. It came from a local church, I remember that. And I remember a sweet handwritten note saying that for every knit and pearl of the blanket a prayer was said for Oakes. I am saying my own prayers that those original prayers are working and helping today. THANK YOU to the sweet unknown friend that made this for Oakes, heart strings to you!