Ryan is three.
He is starting to speak in phrases. Not all the time, but a lot of the time. He’s saying things like, “not this cup, that one.” or “Cheerios, milk, honey.” or giberish that I don’t understand, but it’s clear he’s staying something.
He completely understands everything we say to him… more than we give him credit for. Yesterday at heart clinic the cardiologist offered him a lollipop. “What color is it?” the doctor asked. “Red,” Ryan said. “No, what color is it really?” I asked. “The color you always think is red, but isn’t.” Ryan stared at the lollipop for a long time, his little mind clicking through his mental file. Finally he said, “Orange.” Yes indeed.
Speaking of heart clinic, Ryan had a little check-up yesterday including an ECHO. The report shows that his cor membrane is closing. It was reading at a gradient of 5 in October and now is at an astounding 12. The two cardiologist (Pittsburgh and DC) have been in contact and agree Ryan needs a catheterization – and soon. I’m waiting on a date from DC …. I guess that cath we mentioned last week will happen sooner than we thought.
We’ll keep you posted.
(c) 2016 Leighann Marquiss
Comments (13)
Sweet Ryan!!…such a cutie. Stopped by to check in on you guys, sending him lots of love.
Leighann,
What is a catherization? And what is it used for? does it stay in indefinitely? if you don’t mind my asking 🙂
Heather: A heart catheterization is when a specially trained cardiologist, called an Interventionist, threads a catheter through a vein or artery in the patient’s groin, neck or liver and snakes it up the blood vessel into the heart. He/She then puts different instruments up the catheter to be able to take pictures, measure pressures, and in some cases balloon open or stint blockages, small vessels, etc. (think angioplasty). Many kids with CHDs get an annual cath to measure the function of their heart and take pictures of any repairs they’ve had. Ryan’s only repair right now is his Glenn circuitry, done during his Glenn procedure. He would already have had a cath in May for his annual checkup. With the membrane growing again, it makes it necessary to do one now. The catheter is removed at the end of the procedure.
I don’t mind questions at all. Keep them coming!
Another question for you…you say the many kids with CHD will have a cath annually. Is this something he’ll have to have done for the rest of his life, or is there generally an age when they stop doing them routinely? I’m just wondering if at some point he’ll know the feeling of something not being quite “right” and will know to go see the doctor.
Praying for you all with the upcoming cath!!
is his cor membrane growing bad? i have no idea. what number is it supposed to be?
Hey, sorry, I have a question too. What does it mean that his cor membrane is closing?
Ryan is cute. Can’t wait to see you this weekend 😉
Praying for Mr. Ryan. Sailor and Ryan are not far apart in ages and it seems his speech is right up there with Sailor’s. Some of the things she say’s just blows me away, but then again she has 3 older sib’s at home, and it sure makes it intresting. Her new and favorite phrase’s are “Do you like it?” “Can you hear it?”(we are potty training)
@Sarah: I don’t know when/if CHD patients stop having annual caths. As far as I know Ryan will have an annual visit with his cardiologist. I’m not sure if that will always include a cath.
@Dot and Elizabeth: the cortriatriatum membrane is something that is in his left ventricle. It is something that closes over time and blocks the blood flow coming out of the LV… so blood flows stops (bad) and pressure builds in the lungs as it’s closing (bad). The typical approach is to cut the cor membrane out when it first becomes a problem during open-heart surgery. With Ryan, there were extenuating circumstances early on that made the doctors try ballooning it open in a cath lab. Although it worked… we knew it would be short-term and would eventually need to come out via open-heart surgery. I’m not sure about surgery right now, but we definitely need a cath to confirm pressures in his lungs and the rigidity (or growth) of the membrane.
Thanks for informing us Leighann…so we can know how to pray for Ryan. And of course we pray for his mommy and daddy and sisters too…
Love ya,
Linda
Mom always knows what’s up.
Mom always knows what’s up.
Praying Leighann for your little Ryan!! 🙂
Caths are scary. I think for me the scary part of a cath is knowing what’s coming after. My oldest son has had 3 (pulmonary) valve replacements, so we know the cath routine well. Hugs to you and to Ryan. You guys will be in my prayers.