Care4Conway: First Update

Tuesday, April 15, 2008

First Update

Heather just came in to tell us that they have started ballooning. Ugh. This means that he required an intervention and we are definitely going to be admitted for an overnight stay. When Dr. Balzer came in to talk this morning, he said he didn't think ballooning would work so now we are kind of expecting that they'll have to stent it:(

Pray that if this is the case that he does not develop a big leaky pulmonary valve.

I feel like the wind just came out of my sails.

9 comments:

H. James said...: Thinking about you & Conway today. Bailey had her distal pulmonary arteries ballooned and recovery was pretty easy. Hopefully Connie's experience is the same. The news about the aortic insuffiency is so hopeful though, I am really going to focus on that.
On pins & needles waiting for the results today....
Heather, Tim & Bailey; April 15, 2008 at 10:14 AM
Unknown said...: Don't let the wind come out of your sails! I read a quote in a forward the other day that I would like to share with you. The will of God will never take you where the Grace of God will not protect you. God is with Connie and he is with the doctors. Hopefully after the next time they check in with you you get some wind back! We are praying for you all!
Katie and Adam Kilker; April 15, 2008 at 10:17 AM
Uncle Gil and family said...: Just read the update...hang in there guys, the little guy will be fine. You are in our thoughts and prayers every day...if there is anything that we can do give us a call...

Love,

Uncle Gil & family; April 15, 2008 at 10:18 AM
Unknown said...: Erin, Greg & Family,

I am praying very hard for Connie to get through this procedure with flying colors! You are at one of the best hospitals in the world with the best doctors! As you said, your Easter messenger said it was time for Connie to be healed. Although the road may be a little curvy, he is definately going in the right direction.

Connieis a strong little boy and has already overcome so many obstacles. I have no doubt that he will continue to amaze everyone!!

Praying that this day will soon be behind you all and Connie will be home recovering with his family where he is so loved!!

Love Kim; April 15, 2008 at 10:21 AM
Anna said...: Hang in there Conway! I continue to pray for Conway, you and family. This will be over soon and Conway will be scooting around on that little car in no time!
A. Whitelaw; April 15, 2008 at 10:24 AM
Carol said...: Just listened to your message from prior to procedure. I'm so sorry I wasn't able to get to it. So...you're still thinking that God is good, right? I know we always have our set backs as we perceive what the quickness of God's actions should be.

Connie is a strong boy and has been through a lot worse, not that we want to got to that, but...

Remember, he heart wasn't completely repaired the first time. You knew that future surgeries would be necessary and just maybe this is happening at this point to prevent something more horrific in the future.

As he heals from this, he will be all the more stronger for his next major hurdle - walking, running, curtain climbing. Nothing is going to keep him down! Remember he has God's promise, just trust in that.

Hugs...; April 15, 2008 at 10:29 AM
Carol said...: Erin - just typed this big, long thingy and poof...it's gone. ARRGH!! I'll try to recreate...

So, just read your update, you still do think that God is GOOD, right??? I know it's hard for us when we feel that He should answer His promises in a defined amount of time. Especially, when His messenger spoke directly to you at Easter.

Connie is a very strong little boy. He has been through much worse, not that we want to back to that, but...

Also, remember Dr. Bove wasn't able to completely repair his heart the first time. So, just maybe the need for this procedure at this time is to prevent a much more horrific situation in the future.

Besides, Connie will need his heart to be strong for his next big move - walking, running, curtain climbing. Don't worry he will be able to recover quickly, he's so much bigger and stronger now.

Right that ship, full steam ahead. Remember God is the wind in your sails. Nothing but fear and evil can deflate them.

Hugs...; April 15, 2008 at 10:38 AM
Danielle said...: Thinking and praying for you all today. My God's healing hands be there for the doctors and Connie today.; April 15, 2008 at 10:44 AM
Joy said...: I have been following Conway's story for a while now - can't even remember where I got the link from in the first place! Haven't commented before, but really felt that I needed to post today. I am praying for Conway and for you all. He is in God's hands - there is no better place for him to be right now. Will be checking for the next update.

Love and prayers from Joy in England :); April 15, 2008 at 11:17 AM

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.