Ryan had a meet-and-greet with a cardiologist here in Pittsburgh Tuesday. Dr. Donofrio felt it was a good idea to get a team in our area in case there’s an emergency or we need something checked out. We met with one of the “Top Docs” referred to us by a local. Ryan’s medical file didn’t arrive on time so he asked me to give him Ryan’s history in a nutshell. He knew none of Ryan’s story.
As I progressed through Ryan’s first year Dr. B said, “This is a tremendous story you’re telling me.” He was fascinated by some of the innovative things CNMC did in Ryan’s case and had lots of questions. He said Ryan’s looking great, especially for all of his heart defects and length of stay in the hospital. The only thing he really wants to track is Ryan’s hemoglobin to make sure his blood doesn’t get too thick. We’re set to go back in six months.
Ryan’s truly growing up. Today was the first time he stood to be measured instead of lying down and having the nurse draw a line at his head and heels. He’s 2 ft. 9 in. – exactly 4 ft shorter than his dad.
It is also the first time he stood to be weighed. He’s a whopping 29.6 pounds. His weight has stayed the same for about a year even though he’s growing. Now that he’s thinning out, I’m worried he won’t be able to keep his weight up. Ice cream anyone?
He got a quick EKG… he wasn’t too sure about the probes until we told him they were special stickers.
We tried to get his blood pressure, but the machine wouldn’t read it on his arm or leg. (It’s so hard for a little boy to stay still)
And they took his O2 saturations – they bounced around a bit, but we definitely got some high 70s and all the way to 80. It was good to have confirmation he’s still satting that high.
I filled out a new patient form. It took me about 10 minutes. One, I was distracted. Two, there’s a lot to fill out for him. It’s a bit overwhelming reading the questions and realizing I had to remember and write everything Ryan’s been through. Questions like:
How many times and how long has your child been hospitalized?
What surgery(ies) has your child had?
Other medical problems?
I’m going to be honest. It took me back to a time when hospitals were my life. I was anxious for today’s appointment… I think because I kept thinking of a family we know who has bittersweet memories of Children’s Hospital UMPC. A place where their son passed away almost exactly two years ago. I remember sitting on my couch pumping the day I read Sara’s email. I wept tears of sorrow and joy. Joy their son was no longer suffering. Sorrow knowing they’d have incredible heartache for the rest of their lives.
Walking through the halls carrying a two-and-a-half year old and holding the hand of a five year old was deja vu. Natalie and Ainsley were these ages when Ryan was born. Ainsley’s first question in the exam room… can I have gloves? The same thing she’d ask for in Ryan’s room. This time around Ryan wanted some too.
I think part of the emotions were from being in a new hospital with a new set of doctors and nurses. CNMC is like home to me. I know the halls like the back of my hand. Know the cafeteria and the grill guy. Know where to sign in, where to pay for parking, where to pee, for goodness sakes. Filling out the new patient form means the team doesn’t know us. Doesn’t know Ryan or his heart.
But it turned out fine. Dr. B’s a great cardiologist and has excellent bedside manners. His nurses are awesome. They made us feel welcome. They showed us around. And boy did we get the tour. I thought we were going in for just a consult, but Dr. B thought it’d be a good idea to get an ECHO, chest x-ray, and blood work done while we were there. So…. five hours later….. seriously five hours! Poor Ains. I took her thinking three hours would be enough time for the appointment and to still get her to school. When they mentioned the extra tests I knew she’d miss school. She was actually disappointed and said, “I won’t get to see my friends today. I want to go to school.” Yeah, sorry chica, no school for you! Blame it on your brother.
We sat around and waited a lot. We tried to make the best of it. Here’s Ryan and Andy (someone I’ll introduce you to in a later post) talking on the phone. Literally. Chris (not pictured and also a later introduction) made up the game of calling my phone and talking to Ryan while sitting next to him. He thought it was hilarious. Ryan, not Chris…. well, Chris thought it was funny too. So did Andy and I. It kept us all entertained for some time.
Then the guys deserted us and it was just me and the kids. They found stuff to play with in the waiting room. No biggie. Children’s hospitals are prepared places.
And finally, at 3 pm., we raced to the cafeteria for some not-so-good food (to go) and drove home to meet Natalie’s bus. I came in the door with five minutes to spare. Whew! Boy am I thankful my boy lives at home and I no longer have to go to the hospital every day.
(c) 2016 Leighann Marquiss
Comments (4)
wow! God has been so good! Now that he is more stable, I sometimes forget all the miracles it took to bring him this far. So glad Tues was an appt not a hospital stay. I always hate meeting and getting to know new doctors. God hasnt changed though and He is the one in control. Love ya!
What an amazing journey it has been. God has done so much for you and yours…and we praise HIM!!!
this post gave me SUCH joy! such joy. wow…
This post made me tear up. I don’t know why. Made me think of Ryan’s first days, and my sister’s baby too. One great outcome, and one sad.