"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Wednesday, July 29, 2009

Conference Results

Well, we heard what St. Louis' opinion is for treating Connie's leaky valves. Are you sitting down? You better, because what I'm about to type will make you drop. Their answer is heart transplantation!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That's right. They, specifically Dr. Canter who is the head of the transplant team, feel like re-operation would be a disaster which would then make transplanting him after the operation a bad situation. They want to cath him and get him listed as soon as possible. Dr. Bromberg gave more details about how the conference went and let's just say, we're taking it as a sign from God that we should just stick with the folks up in Michigan. Now, if they come back saying the same thing, then we'd just stay here and wait to be transplanted locally, but we (and Dr. Bromberg) are hoping the SLCH guys are wrong on this case.

We're a little taken aback by this news and Greg especially is struggling with it. Please lift our little family up in prayer, that God will give us peace in the words he has told us in the past. He has spoken to us through his angels. He told us Connie would be healed. He told us he would live a long and happy life. We believe Him and we trust in those words with all our hearts. Also, please pray that the Michigan team will be guided by God's hand and given extra wisdom when they decide what their plan would be for our boy.

ETA: Dr. Bromberg also gave us some med changes and we are decreasing the Lasix to .8, down from 1.3 and skipping Thursday's dose. We're also dropping the Amiodarone to 9.5 from 10 ml's (of the super concentrated stuff--starting 7/31 we have to throw that out and use the less concentrated and we'll give him 19 ml's of that).


meesha2601 said...


My heart is breaking for you and your family right now. I am praying for Connie's continued strenght and for the families strength and courage to make it through every comes your way. I will also pray that the doctors all have the strength and knowledge to make the right decision for your little boy. Connie is so lucky to have you as his mother and to have such a wonderfull support team. If there is anything at all that I can do please please call I am thinking of you guys everyday.

God Bless and Heart Hugs,

Nicole Hoagland mom of Lorelei HLHS

Lisa P said...

Remember, we were once told in St. Louis that the FONTAN would be the best course for Grant. Look at him now - post DS. GOOOOOOOOO Michigan!!!

Faith M. said...

I am so praying that SLCH is wrong!

Anonymous said...

What devastating news, Erin. My heart is with you, for this precious little boy and for your whole family. You all have been through so much. I pray that God gives the strength to believe in what he has done and said through his messengers to you. This is such a blow, when all seemed to be going so well. May God be with you all in these dark moments. Love and prayers always, Sr Josephine

Lisa said...

Oh Erin,
I am just numb. I can't imagine what it felt like to hear those words from your doctor.

With that said, God is in the miracle business and He has let you know that Connie will live a long and happy life. There are many ways in which this could happen. Stand strong and do not lose hope!

We'll be praying for you all~

Anonymous said...

Our continued prayers are with Connie, Mary Kathleen, CeeCee, you, and Greg this night and every night. Good Lord please guide Michigan's recommendation on behalf of little Connie, Amen.

Uncle Gil Aunt Maureen and the kids.

Michelle K said...

I am praying that God grants you the strength you need.

Love to you all!

Anonymous said...

You and your family are in our prayers daily. Give everyone a big hug from us!!!!!