"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

Monday, July 27, 2009


I never thought I would say that I was relieved that my little boy has to undergo open heart surgery, but after today's appointment, there is a certain sense of relief knowing that the problems are identified and are going to be addressed. The sooner we address them, the sooner Connie can, as Dr. Bromberg put it today, "get back to the business of being a little boy."

Today's echo showed the valves are leaking badly and Dr. Bromberg feels the biggest culprit and the one that has changed the most is the mitral valve. He also feels like this valve has a great chance of being repaired and still hopes we can avoid the need for an artificial, mechanical valve. The ejection fraction, which was 55% in May, was 32% today. This is a number that shows how well the blood is pumping out of the left ventricle, the main pumping chamber. While 32% is not good, it is also a little subjective since he has been switched. So, it also isn't devastating or anything. Just another number to follow for now.

The next step is to put today's echo and clinic notes on CD to be sent to Michigan for Dr. Bove's and Dr. Dick's surgical opinion. We hope that they will have the opportunity to review the info by this Friday. On Wednesday of this week, Dr. Bromberg will present Connie's case to the team at St. Louis Children's as well and hear their opinion, especially what the EP, Dr. VanHare has to say about his approach to getting rid of the atrial flutter. Given how busy the program is in Michigan, Dr. Bromberg said it would probably be two weeks before Connie could get on Dr. Bove's surgery schedule. He may get preference since he's an existing patient, but it looks as though the likely time frame for valve repair/replacement is middle to end of August.

To help out in the meantime, Connie has been prescribed Lasix (a diuretic) to relieve some of the symptoms and another drug to even out that thyroid number that was off last week.

I'm sure I'll post more details about today's visit later. I'm just not feeling too wordy right now (I know this is a surprise to my friend Michael M.!).


Sarah Beams said...

Hi Erin and Greg,

Thank you for this update! I pray God will continue to lead you towards the path of recovery for Conway. I too, am tentatively relieved. It does seem to be good news that the cause of his difficulties has been identified and that the doctors know how to move forward. I thank God for their knowledge and know-how!


Stacie Kuhlman said...

I am happy that you all have a new plan in place and have a direction to go in. I am praying for you all :)

Stacie in Texas

Anonymous said...

Dear Erin and Greg, It has been such a long hard road for all of you. I do feel relieved that they have figured out what it wrong with this beautiful boy's heart, and that there is a solution. Please know I remember you many times a day in prayer and thoughts. May God be with you every step of the way. Keep brave and keep strong. Much love, Sr J

Aunt Donna and Uncle Paul said...

One day you will be able to look back and remember when there was all this turmoil, and smile and thank God that you all made it thru. And wonder what you were so stressed about. (Yeah, right). But in the meantime, know that there are so many who love you all and are praying daily (sometimes hourly) for health, healing, wisdom, strength, knowledge, skill, patience, peace, and endurance.
Each of you are in our prayers EVERY day and more so at these trying times.
We love you

Uncle Dave said...

I just wanted to drop you all a line to let you know we in Chicago are praying and pulling for you all.

All our love,

Dave, Michelle, Max and Kate