Tue 22 Apr 2008
News To Me
Posted by Jane under Updates
[12] Comments
We had a very interesting appointment with the cath lab surgeon today. I really like him, he’s always very direct but answers questions thoughtfully and compassionately. He seems to understand how important everything he says is to us. Every doctor we’ve spoken with has their own take on Ramona’s treatment plan and prognosis and Dr. Wax is no exception. He shared two thoughts with me today that were rather a surprise…
The first thing was that, although the risk involved in a straight heart cath is pretty minimal, the risk of something “really, really bad” happening goes up to about 5% once any surgery is done to the heart during the cath. This totally makes sense, but had not occurred to me before and adds a little more stress to my already building pile of worries and anxieties.
The second thing was a little harder for me to take in and I’m still not sure what to make of it. I asked him if he thought Ramona would “make it” if her arteries had not grown significantly. By this I meant, “Does she have a chance of growing those arteries very, very slowly and still having the repair?” But he answered by explaining that he felt that if Ramona’s saturations remained in the 80’s and if those arteries grew enough to keep up with her, she might survive into her thirties, even with an unrepaired heart.
This flies in the face of my previous understanding. We have been thinking that we were in a race against the clock to get her heart fixed before she could no longer survive. He made it sound as if not only was this not the case, but that repairing her heart with arteries as small as her was a “tough call” and “grey area”, even if the CV surgery team thinks it’s a good idea.
So that’s a lot of food for thought. I’m still hoping and praying that her arteries will be miraculously big enough that a full repair would be a no brainer. But if that’s not possible, I find hope in the possibility that she may have some years ahead of her anyway, even if it’s not as many as we would like.
So, please join us in prayer. Please pray that by her surgery (on Friday) her cold will have cleared up, otherwise we’ll have to reschedule. Please pray that they see nice big arteries when they go in there. Please pray that we can get some sleep and rest between now and then. And please, please pray that Ramona will recover quickly, both physically and emotionally.
Thanks for checking in on us, Jane.
Here’s a pic of Ramona acting silly in her pj’s at breakfast (taken with my phone, but still pretty good!)
Ramona isn’t silly. She just has a sense of humor and is fully capable of making us smile! I love her “silly” ways which have always made my heart smile. I rejoice that I know her and will forever be her Big Papa.
“I have given you authority to trample on snakes and scorpions and to overcome all the power of the enemy; NOTHING WILL HARM YOU”
(Luke 10:19)
Super-interesting news! We’ll keep praying for big fat arteries.
Isn’t there a used record store in Evanston called Dr. Wax?
Jane
These little tidbits of information are so enticing and infuriating at the same time. I spoke (via email) with a family whose child has a similar condition to Wren’s and was told that the surgeon said his prognosis was excellent and they shouldn’t worry etc etc. By contrast our doctors are much more circumspect.
I hope Dr Wax is right and there are more options than you realized AND that the arteries are larger any way.
Interesting news. It is frustrating when we think we have a handle on our situation, only to be told that we are mistaken. However, the news that Dr. Wax shared with you is great! Doesn’t it feel better to know that you are not as up against the clock as you thought you were? Sometimes I think God uses these circumstances so that we can appreciate our situation. Maybe if you were told that Ramona would live into her 30s with or without surgery, you would be so upset that her life was cut short. But being presented at the beginning that every day with her is a gift, now you can feel truly grateful that she will be here for at least 30 years! I don’t know if I’m just blabbering on, but I guess I’m just saying sometimes its about perspective. In any case, I’ve been praying for large BPA’s and will continue to pray for your peace of mind.
Sending love from California,
Andrea
We are praying! Our Charles just asked again how Romona was doing? Continue to put you hope in the Lord because I see over and over again that Drs. often have very differing opinions.
What a great picture of Ramona.
Dear Ones,
I am grateful for the excellent care available to Ramona & to you & for the dedication with which you do everything for her, for Simon & for one another. I believe all efforts on her behalf & yours will bear good fruit.
Thank you for keeping me in the loop, for calling me to prayer & for including wonderful pictures of the children. Ramona & Simon are full of LIFE & LOVE!!!
Hmmm. The plot thickens!
Hope is always a good thing, and this news makes me very hopeful. I love that little Ramona Mae, and she’s turning into quite a character, just like her mom:)!
Well good dental care is no laughing matter….erm….
I see her strategy though, use the toothbrush AS the utensil thus eliminating a whole step. I like the way that Ramona thinks (or rather the way I think and then project my thinking on to her.)
still focusing on big fat growing arteries! lance has been given me anatomy lessons so that i can have a solid picture in my head… i’m wishing you much peace and comfort in all the news you are getting (and not getting). peace. sarah p
Wow. What a big day. Praying Praying Praying.
Dear Jane and family:
We’ll be praying for artery growth!
Loved the previous photo of Simon with his new ‘do, and am tickled pink by how you captured Ramona’s character and personality via camera phone (priceless).
Keep smiling and God bless!
She looks like such a grown-up girl in that pic. She is just adorable!!
We will say many prayers for you ALL for tomorrow. Ramona will do great!