Thu 5 Feb 2009
Maybe Baby
Posted by Jane under Updates
[17] Comments
We saw the cardiologist this morning and got some more information. Here is what the cath surgeon is proposing:
He spoke with several colleagues and although the majority felt he had made the right call, one colleague felt he could try again with a slightly more aggressive approach. It sounds like they will basically be repeating the October surgery, but if it doesn’t work (like it didn’t in October), they will try inflating the balloons multiple times and perhaps even try larger balloon sizes.
I feel relieved that they did not suggest some very new, very different, very risky procedure but still feel a little disappointed that they didn’t come up with some brilliant new idea. We will schedule this next cath for the month of May, so I guess we’re staying on track for about every six months.
Mona’s blood pressure, EKG and echo all looked good. She was very sweet to all the doctors and technicians and even told the echo technician, “That’s better ‘Guy’. Good job” when he finished. Although everything still seems so uncertain with her long term prognosis, the cardiologist told me emphatically that she is doing very well right now, satting well, good pressures and no change in the BPA’s or conduit.
Before signing off I wanted to share a funny conversation I had with Simon a few days ago. He kept trying to kick me while I was trying change his diaper.
Me: Please don’t kick me. Would you like it if I kicked you?
Simon: Yes.
Me: (pause) I wasn’t expecting you to say that and now I don’t know what to say.
Simon: (pause) Don’t SAY anything. Kick me.
Me: Honey, I’m not going to kick you, it wouldn’t be very nice.
Simon: Okay, PLEASE kick me.
That boy is trouble. Thanks for checking in. I’m sure there will be more to say about this once we’ve talked to the surgeon but that’s the scoop for now.
Love, Jane.
Here’s a shot of our girl almost exactly two years ago, before we knew about any of this. She was a peach then and she’s still just about the best in the bushel today so I’m thankful.
What a little trooper she is! Keep going Little Ramona!
Paul
Well I am certainly praying that this option is what it takes to help out your little girl’s heart. I’m so glad there IS another option available! It’s such a good sign that all her other heart stats looked so good.
Your conversation with Simon put me in laughter! What a riot!
Have a good rest of your day. Take a deep breath and know that Ramona is in good hands! xoxoxo
Relieved for the family that there is another option and that it is one which you are familiar with and understand. Will keep Ramona’s good satts/pressure/bpa-ness in our positive thoughts. and thanks for sharing that great simon story. i’m going to send you a fun one in return. . . cheers and peace and r&r. sep
Sweet Ramona, and funny Simon! Lord bless the Deitrich family!
Simon sounds allot like Izzy these days:) too funny! sending our love from seattle~wyndi
Dear Jane, Dear Andy,
I am dee-lighted that Mona’s docs are willing to try again! And that she is doing so well, in your care & theirs!
Simon has found a ministry: comic relief! Keep it up, Si-Si!
Miss you, love you, am proud of you all!
Sue
That picture always does me in. Praying for you all.
Sounds pretty positive the docs feel they have options – and that sweet little pistol Ramona is up for it. How gentle and endearing that she said “Good job” to that technician – and strangely appropriate – she has endured more than many of us ever have or will with such spirit – God, You certainly do use the weak and meek to confound the wise and strong. How humbling. Thank you.
And Simon is the best kind of trouble – purely irresistable.
Thanks for the update Jane. I am praying.
Love,
Jackie
How polite of Simon to use the magic word! And I’m glad to hear that there are some options in your future.
xoxo!
You and your beautiful children (and the docs)are in our hearts and our prayers. I hope I will meet Mona and Simon in person some day. Bless you all.
Love, The Johnstons
Maybe you should just go ahead and give that Simon a kick. Just a little one. See what happens.
Sounds like your cardiologist is a great “guy.” I pray that in his humility God will give him wisdom for our little Mona. We’re praying.
Hi Jane
I think it is encouraging that they are considering giving it another try. Have you sought your own second opinions from other cardiologists and surgeons?
Our support group met with the head of surgery and cardiology at our Children’s Hospital. They emphasized the importance of seeking second opinions and of the diversity of experience and outcomes from institutions.
It is not personal, its just that the field is so young that nobody knows what is best or even possible and so it is good to ask around.
Shannon
Hi Jane,
I am glad that they are giving it another try. Hopefully this one will be successful. Can I ask if Ramona has a RV to PA conduit? From our earliest conversation way back when I thought I remembered hearing that she did not, that they went the route of a shunt instead. Just curious. Regardless, I will pray that they are able to widen those arteries this time around. That is what just sucks about the pulmonary atresia part of our kiddos CHD’s. I always remind myself that it is life-long maintenence. So, you are certainly not alone in your worries.
Just remember, never ever give up!
Thinking about you all.
Kelly (Jack’s mom)
Hi Kelly!
Yes, Ramona has an RV to PA conduit. In the early days they were calling it a “patch”, which is probably what you remember from our conversation, but it is in fact the same thing that Jack has. Unfortunately Ramona’s arteries have not responded to the conduit in the amazing way that Jack’s did. Boo! He is looking so good, by the way.
There was early talk of a shunt for Ramona, but the arteries are way too small for that still. Thanks for asking!
Grandpa Wayne and Grandma Sue–have told me about Ramona and I have been keeping her in my prayers. I have just found the website–again—and wanted you to know, as I pray for Ramona and you, that there is a little verse I recently heard which said, “When life gets really hard I imagine God holding my hand”.
I am sure life is hard for you, as young parents, but I know– God will be holding your hands-mw
I keep up to date with Ramona and Simon by way of Vicki but let me tell you how amazed I am by the strength, resiliency and good nature of your sweet children. I am sending love to your family from the Scott family. Happy Valentine’s Day.
Great to hear an update! Sweet Ramona will do great:) I will continue to keep you and your family in my prayers. Miss you all!!