Yesterday, I got a call from Primary Children's Medical Center in Salt Lake City. That is where Tyler was treated both times for his congenital diaphragmatic hernia. When he was born, he was there in the NICU for 28 days and then at 4 1/2 months we were back up there for 2 weeks when his diaphragm re-herniated.
Well, I get this call from the hospital and they want to follow up with Tyler. They are doing a survey and checking up on ALL of the patients that had their diaphragms repaired at Primary Children's. I had to ask, how many kids are you following up on?
*200 diaphragms were repaired at PCMC in the last 10 years
*Tyler was one of the top 50 on the list of severity (the top 50 had less than half of a diaphragm. Tyler's was even a lot less than that, so if they were to categorize it down more, he would have been even more up to the top).
She wanted to know two long-term medical problems:
*If he has PECTUS. The answer to that is NO. He did when he was first born, but when he was between 1 and 2 years old, it straightened out. I only remember it because when I would nurse him, I would rub that little dip in his chest. It was about the size of a golf ball.
*If he has SCOLIOSIS, and he does not. He has shown no signs of it yet, so we're hoping we can stay on this good luck train and stay far away from scoliosis!!!
Then she asked what lasting medical problems he has.
*He has pretty bad reflux. It is completely controlled with an adult dose of medication (same dose his Grandpa Clyde is on right now! haha!)
*He has an extra rib on both sides (he could have made 2 Eves in the Garden of Eden if he was there!!!)
*He has EXTREMELY flat feet. (that could be related to CDH or it could be from the Campbell family. There are several of them that suffer from severe flat feet, including Randy's brother, Cory. So, who knows with that one!?!)
When I was done telling her those 3 things, she was ready for the next problem and I had none for her!!! It was GREAT!!!! I love telling people how good Tyler's health is. Medically speaking, he should not have lived, let alone be as healthy and active, independent and awesome as he is!!!
It's easy for us to forget what an amazing blessing we have in Tyler. He's just a normal kid to us! Unless you see the gigantic scar across his chest, you would never know anything was ever wrong with him. But we love it that way!!!!
A wonderful moment in our lives....
Back in August, we got an opportunity that I wondered if it would ever happen. Dawn Williamson, the founder of CHERUBS, had been to a CDH conference in San Fransisco and on her way home, had a 2 hour layover in Las Vegas. She put on her Facebook that if anyone was around, she would love to have lunch at the airport and meet!!!! I instantly started crying!!! Vegas is only 1 1/2 hours drive from our house! WE WERE IN!!!!!
We drove to Vegas and waited for Dawn's flight. And then I saw her, glowing like the angel she is!!! Please take a minute to read her story. It was a moment that I have no words to express how it felt. I have learned SO much from her and the CHERUBS support group. We were sisters in a club together, forever. Our lives took such a different path, but our hearts are connected.
Then I got to introduce her to MY CHERUB, Tyler. Dawn is in regular conversations in our family, not just my little family, but the grandparents, aunts and uncles, everyone know who Dawn is and how important she is to us. She couldn't take her eyes off Tyler. Her son, Shane, did not survive CDH and that is why she works so hard for CHERUBS, so there is a place where people can go, get informed and not feel alone. This meeting was completely amazing to me and my children.
This is Jill, she lives in Vegas and has a son that is Harper's age with CDH. He's doing really good, too. I can't wait to meet up with her again and meet her little man!!!
Here we are, 3 moms that have gone through the same situation. We will always be bonded like others are not.
And then we were off. Lots of hugs. Lots of tears. Sometimes I didn't know what to say, but I didn't need to say anything at all. Dawn knew what was happening in my heart. I thanked her for doing so much hard and painful work that helped MY family, directly and benefited MY son, directly. There are no words that can express what she means to us. A true angel on Earth.
As we were on our way over to swim at my Aunt Vicky's house, Tyler said in a very somber voice, "mom, this has been the best day of my life". It was life changing for us!!!!
Blessings are all around us, sometimes it takes reflecting on how things have been to realize how blessed we are that we even survived!!!
So, I'm glad they are following up with the diaphragm repair patients! It was a good phone call!!!