Wednesday, September 26, 2007

Dare to Hope

(Sorry for taking so long to post, but here it is!)

We had some good news today at the cardiologist as well as conflicting stories. When Clare's doctor told me that the Boston doctor did not expect to see Clare back in the cath lab for 2-3 years, I was floored. Utterly speechless. I stammered, "Are you sure?" She smiled at my disbelief and read me his letter. Clare's other Boston doctor, however, feels it is more accurate that Clare will be back in 6-12 months. I am guarded in my optimism of Clare's actual timetable, but I am daring to hope that it is the longer stretch.

After another exhausting cath procedure and two long post-cath weeks, I was prepared to hear that Clare was going back in December. After enduring four caths in her first 11 months of life, she had a 15-month reprieve. After her cath in June, though, when we heard they wanted Clare back in three months, I feared we were back on the road of caths every three months. That there is the very real possibility that Clare is good to go until at least 2008 fills me with hope again. Shawn and I have been very worried over the state of Clare's heart lately. I have no false view of reality that Clare is better. I know her heart is not "fixed." I know that by the doctor saying 2-3 years, he is saying that he has done all he can for now and he expects his "repairs" to hold for that long. But I also know that every time Clare goes under anesthesia and the doctors run their catheters through her heart, her risk of "problems" increase dramatically. Anesthesia is so risky for Clare, that her doctors would not even put her under unless the risk of NOT doing something to relieve the build-up of pressure in her heart is much greater.

So my glimmer of hope is there. Clare does not return to the cardiologist for another echo for three months. In six months, she will have a lung scan performed to check how her output looks. Clare's cardiologist does not want Clare to have the renal MRI right now because she would have to be under anesthesia. We are going to continue to monitor her blood pressure at home to be sure it continues to stay steady. At least then we know that, even if her renal arteries are narrowed, they are not getting worse.

11 comments:

Amy Ross & Scott said...

So happy to hear that it sounds like you won't be back in Boston again this year! Hooray! ALL the kids looked wonderful when we ran into you guys on Friday. (Wow -- three!) It was great to see all of you and great to get a preview to your good news in person.
Love,
Ross

Anonymous said...

Thank God for those small glimmers of hope, huh? I am so thankful and joyous that the "smarter" doc thinks 2 years is good!!lol Love and prayers as always! Aunt Joan

camille said...

Wow! What a rollercoaster. I hope hope hope you have 2 years before the next cath. That would be so wonderful.
Thanks for keeping us updated :)

Julie said...

I hope you get to wait a little longer. It is alot for you & her to go through.

Laura said...

I will be praying for the three years!!!

Amy said...

Well, I will take that for good news and be hopeful Clare doesn't have to see the inside of a hospital from for several more years.
XOXO
Amy

Every minute counts.... said...

I understand what you mean...I will be with you in the hope that there are no caths until at least 2008. As for the renal arteries, as long as her BP is good..there really is nothing they will do. Even with Abi's BP high...there is nothing they can do. Simply, her arteries are too narrow to even balloon. Meds are the only option until they stop working and then you move to grafting to make larger.( at least that is what we were told).. I will pray that everything holds steady and you guys get off the rollarcoaster for awhile :)
Noel

Katie said...

I will be praying that this doctor is right, 3 years would be fantastic! :)
xxoo

Tara said...

I continually keep you all in my prayers - it sounds like such an emotional roller coaster ride. I can't imagine. I'm hoping for the three years!!!!

Kerry said...

:) :) I say be optimistic! I'm glad I will see you under more happier circumstances :)

Lisa R said...

Gotta love to see a little light at teh end of the tunnel....Glad you are all doing well :)