Sun 2 Nov 2008
Cath Update
Posted by Jane under Updates
[41] Comments
Sorry to worry you guys, we could not get access to the blog (thanks Jon for getting us hooked back up). So here’s what’s going on…
I’m going to try and keep this straightforward because every time I try to write this in a way that tells how I’m feeling about it, it becomes an epic treatise.
Ramona is doing well at home with us right now. She came home yesterday after having a 5-6 hour cath on Friday at 8:30am. The surgeon came out to speak with us afterwards and said, “Well, we were in there a long time but we accomplished very little.” He went on to explain that he was unable to balloon the areas he had planned because of the amount of tearing he was seeing. He tried multiple planned locations and was unsuccessful. He said he did not have an answer for why this worked last time and not this time. He said he does not plan to try again. He also stated that he feels at this point that Ramona is not now and will likely not become a good candidate to have her heart defect repaired. He suggested that perhaps she could survive for quite some time, perhaps 10, 20, even 30 years without this repair.
The cardiology team is now going to solicit second opinions from other surgeons across the country and then conference and get back to us. We will hear back from them in late November. Even if they do abandon the plan to try and correct her heart defect, they will still treat her. As the effects of her defect progress she may require interventions to prolong or improve her life.
We of course know that anything is possible, that new treatments are developed as the years progress and that we have not yet heard the second opinions. We also know that none of us know how many years we will have on this earth. All that being said, I am heartbroken that we have come to this crossroads and am struggling to accept the fact that this is not all just going to go away.
Thank you for your calls and messages, it means a lot to us. Here she is this morning on a puddle hunt with Daddy.
Jane.
we’re praying…always….for all of you! I’m so sorry for your grief, beautiful friend.
I just checked out this site for the first time today. I had no idea you guys were going through this. She’s SUCH a cutie! I will think of you guys every day. That’s a great “puddle-hunting” picture.
All our best from here,
Jamie, Kathleen, Fiona, and Liam (doggie)
Jane, we are praying for you all. You are amazing–your whole, beautiful family is amazing. You all are in our hearts today and will be always.
oh Jane, I am so sorry the news was not was we all prayed to hear. you are loved and we are still praying.
Melissa
Dear Jane and Andy,
Thank you for sharing what you know & some of what your feel. Well said.
I am so sorry the doctor could not offer better news! I’m glad he will confer with others, & I will pray for their inspiration.
I love you & yours!!
Jane, Andy – we are sure thinking about you right now and praying. We wish the best for that beautiful little girl, and pray that things improve and quickly. Our best to you, sending hugs.
Jane and family – I’m from the Dec. 2006 Snowflake board and I have always enjoyed checking in on Ramona and her progress. I think about her and your family often and add her to my list of prayers each night. I will continue to pray for little Ramona and for your family.
Jodi
Jane and Andy,
I have been checkn this site daily since friday..I have not stoped thinking about you guys since Thursday. Alexis and mikey both asked about the kids on friday! I am very sorry to hear the outcome was not what you had hoped for…we will all keep momo(as mikey calls her)in our prayers!!
If you need anything dont hesitate to ask.
We’ll be around all week if you guys want to come over and talk or visit in the park if Mamo is up to it. Maeve misses Mamo and talks about her and Simon all the time.
Andy and Jane,
We are so so very sorry about the news. Our hearts are certainly heavy. We will continue to lift the family up in prayer.
Love to you all.
The Boneck
Thinking of you as you continue this journey. Lots of thoughts and prayers are coming your way each and every day.
Andy and Jane
Halloween has been in my head as the date for Ramona’s surgery since our last conversation. Know that you have been on my mind often and that you are held in prayer. I hate the news, It is so hard to face this kind of uncertainty especially as it is wrapped around your little girl. I love you and miss you, if you want to talk I am here.
Love and Peace to you all
Kerry
My heart aches for you guys. I’m so sorry for this news….
Jane & Andy,
Our hearts ache for your pain as this journey continues. Please know that we lift you all up in prayer and we know that God will hold you close.
Much love, jill & family
Hey guys. I love you all.
Thanks for this update. She is such a beautiful little girl. We have been thinking of you both all weekend. This is a very difficult time, I am sure. We are here for you all.
Carrie and Ian
Jane,
OH…not the post I expected to read when I logged on…I was just looking for cute Halloween pics!
We will keep you guys in our prayers. Now..I’m going to go back and read…but, what exactly are they waiting to repair?? (or, you can post or email me with specifics!)
now..make sure they send her records to our surgeon, Dr. Hanley, at Stanford! He’s THE MAN!
ok…now, it’s going to bug me until I understand..so, I”m off to read past entries!
Hope you just focus on playing with those cuties…and lovin’ on them!! (and sucking their snot from their noses!)
Love to you all,
Kathy
Jane and Andy,
This is a setback, and not what you wanted to hear. Your faith will help you so much in the coming times as it has in the past. But, you’ve also already seemed to master living in the moment and taking each day for what it brings. I love that Ramona and daddy were puddle jumping already today! So cute. Keep up your optimism (but it’s ok to be sad and angry too!) and know that many are thinking of you. [I’m sorry if these weren’t the right things to say–we’ve only just gotten in touch again, and never having gone through anything like this I can only imagine the strength y’all must have to still sound so positive.]
Jane and Andy,
Our love to your guys. Glad to see you got out in the sunshine this weekend.
Molly, David and Evan
Just wanted to let you know that we are thinking of you all.
Hi Jane and Andy,
I just checked your website today for the first time. All I can say is we are both thinking of all of you, you are very brave. She’s a beautiful child, looks just like you.
hugs,
Jing
Oh Jane, I’m so sorry to hear this news. I can definitely understand all your feelings of grieving again. I think it’s a great idea to get second opinions and encourage you to check with Dr. Hanley. Give me a call if you’d like to talk. I’m thinking of you.
As you have been, you all will continue to stay in our prayers. Our hearts ache for you as you try to understand better the journey that God has put you on. I am so happy to hear that CMH are looking to help find some answers for you by looking to top notched colleagues across the country…you never know what they might find. And 10, 20, 30 years the possiblities on medical advancement are immense. I am sorry that I cannot find the words to give you true comfort and peace in your hearts right now. But I am truly joyed to see that you are (as you always have)finding happiness in the little things and not soley focusing on what lies ahead for Ramona and you. Please know that we are always here for you. Take Care and maybe sometime we can get the kids together again.
Sharon and the gang
Jane
So sorry that you don’t have an immediate hope of a repair. I don’t think that they know the answer right now and I will be watching for your second opinions.
If it helps, when Wren came from cath lab the doctor told us that his mitral valve was deteriorating and needed work. Our cardiologist and surgeon have taken a very different interpretation. Again, Seattle wanted to do one surgery on Wren while Dr Hanley proposed another plan.
When things go well this difference of opinion drives us crazy but it also gives us hope – that someone has the vision to repair Ramona’s heart for 40, 50, 70 years.
If not now. In 5 years.
Shannon
Oh, Jane. I don’t have words to type. Please know that my prayers are with you.
prayers for healing and good thoughts for a positive second opinion, a healthy ramona, a rested family, and more good puddle jumps for the soul. xoxo. sarah, lance, and avery
Ramona is in my thoughts. When I reconnected with Corinne earlier this summer and heard of about Ramona, I could think of few stories more inspiring than that of Ramona and your family. I have a 3yo girl and 10mo boy and I can only imagine what you guys are going through. Our best to you all.
Mike
You are all in my prayers my friends. Thank you for letting me walk this journey alongside you. Love to all of you.
Our hearts & prayers are with you.
Hi Jane,
:’-( I’m glad they’ll be consulting with additional doctors… I am a firm believer in fourth opinions and also the potential of the heart muscle. You are not alone.
I came across your site a few months ago and have had your little girl in my thoughts ever since. My daughter’s cardiologist is at Boston’s Childrens Hospital and he has said several times that the amount of research done in pediatric/adult cardiac care is constantly ongoing and advancements are made on a frequent basis. I hope that your daughter’s doctors find some other options when they talk with other surgeons. I am keeping you in my thoughts and prayers. At such a young age your daughter has already gone through so much, she has a strong spirit — there will be a way, keep your faith strong! God Bless you , your husband, sweet little Ramona & Simon.
Jane,
I am so sorry to hear this news. Your family has been in my thoughts and prayers all weekend – you are unbelievably strong. I know how scared you must be, but you have a great team consulting with the best cv surgeons in the nation. New techniques and repairs develop so quickly in this field…mortality rates have declined 30% in just the last decade for children with CHD’s. If they can’t come up with a solution now it might be right around the corner. It looks like you have a ton of amazing people praying for just that to happen. Keep faith, Jane. You will continue to be in my thoughts..
Estrella
I’m so sorry that you didn’t get the news/results you were hoping for. You are so right, though. You just never know what will be possible medically in 2, 5 10 years. Look at how many advances have been made in just the last 10! We will say prayers, as always, for your sweet girl and for the two of you. xoxoxox
So sorry to hear this news. My heart ached as I read your post. I will continue to pray and hold strong in my hope that some medical advances will help Ramona. I think of your family often & I will continue to pray for all of you.
Love,
Angie
my heart is burdened for you…so sorry guys.
Thinking about you and praying for you.
i am sorry that the news came back like this adn I am hoping the second opinions bring much better information and options. we are praying for so many advances and research. I love the pictures! your cell takes great photos!! sending all our love~wyndi and Izabell
This must have been incredibly painful news for you to hear and to write, but thank you for sharing it with all of us. I so wished for better news for our miracle girl. She is amazing, no matter how you look at it–puddle hunting just days after the cath! What a trouper!
Speaking of amazing, you and Andy are such loving parents. You are giving Simon and Ramona the kind of childhood most of us dream of for our kids–full of love, laughter and joy. You, and the doctors, are all in my prayers.
I wish you continued strength in your dark moments. This has got to be incredibly hard for you all.
If you need anything, please let me know. We are just down the block and at your command anytime.
Jane and Andy,
As we are tormented by little things like ear infections and tubes, I can’t even think what heart and life issues would feel like. My family and our church are praying for you and the children. May Gods joy fill you and may he give many blessings through this storm.
Dear Jane and Andy
My heart and prayers go out to you for Ramona and the whole family. I pray that through this difficult time that you and Andy will be gentle with one another. You are not alone. A whole host of angels and our prayers are surrounding You and Ramona.
Love
Aunt Rose
PS I love the picture of Andy and Ramona.
You all are in my prayers. You never know what the second opinions will bring. Keep your head up.
Love,
Vanessa