Care4Conway: UPDATE

Wednesday, June 10, 2009

UPDATE

Wow, we should ask our prayer warriors to unite more often! After asking for your prayers, Erin got two pieces of great news yesterday. First, she has an interview on Thursday so if you could continue to pray that she does her best on the interview and that God's will will be done, that would be great. Also, we did find out that we are eligible to continue health care coverage for 9 months and because of the new laws related to the March '09 stimulus package, her former employer will now have to pay 65% of the premiums as opposed to us having to pay the full 100%! Isn't that a blessing?!

Just wanted to let you know your prayers are being answered! We continue to marvel with God's handiwork.

Also, I wanted to pass along another bit of God's greatness. I've been following a story of a little 8 year old boy named Tommy. He's been quite sick in heart failure for at least the last 15 months to the point where he was vomiting during every meal, etc. He didn't even have energy to brush his teeth anymore. Well, a few weeks ago, one of his best heart buddies lost his battle with Congenital Heart Disease. About a week later, Tommy's mom got the call that his new, perfect heart was ready. He got the heart transplant last week and is now out of the ICU. Here is his mom's latest update. She mentions in it the story of the survival flight crew that crashed two years ago on the way back to the hospital with a harvested heart and lungs. We had just made arrangements to go to Michigan when that story hit the national news and we saw Dr. Bove's picture and name in the StL Post-Dispatch. It is chilling to read the events that took place up there the last couple of weeks.

"I can't believe that it was one week ago (in about 3 hours from now), that 'the call' came in. Each day I feel like it will all start to sink in more but each day I am more overcome by another facet of it all. It was also one year ago today that Tommy was officially listed for a heart (after finding out on May 6th that this was the road we were taking).

Tommy was moved out of the ICU today and onto the general floor into an Isolation room. We soon found out that his 'transplant sister', Lindsay, was right behind him! He is doing well but says he is a bit 'confused' and he's been quiet, but we are working through it. His echo showed that the Tricuspid valve leak is improved and so his the function of the right ventricle so we will take that and give thanks!

Tommy also got up and walked today for the first time! He did real well, and peeking in on Lindsay from the window next door was a great incentive! He said he felt 'woozy', a little light headed and tired after a brief stroll (all to be expected at this point). His body has been so used to being in severe heart failure for so long and working so hard to do the simplest of things, that there is a lot to get used to for both his body and his new heart.

When I think of all the things he could not do over the last 15 months, like go to school, be outside last summer (the heat was too much), or outside in the winter (the cold too much), play outside, climb stairs, run a base, he has never been on a bike, eat without gagging and vomiting, be able to get through a meal at his favorite restaurant or more recently go to church as a family (although going to public places like these will still be off limits for 3 months). Recently, he was even unable to brush his teeth at night from exhaustion and his daily naps were getting longer. When I think of what Dr. Ohye said about the real condition of his heart, I lose my breath.

The emotions I find myself having are ones I don't think I have allowed myself to have up until this point,..combined with the timing of things and the circumstances of the previous 3 weeks,..it's really impossible to describe. Today I was reminded of another 'part' to this Miracle that caused me to lose it, yet again. On the day of Tommy's transplant there was a dedication ceremony taking place in the front of the hospital for the 6 lives lost 2 yrs. ago on June 4th when Survival Flight crashed with an organ procurement team coming back here to do a surgery on a 50 yr. old man. A sculptured wall was built, made of 600 stainless steel flaps, designed to rotate when Survival Flight or a Helicopter comes or leaves UofM. During the ceremony, at about 1:45pm, Survival Flight flew over the sculpture and the flaps began rotating, as if done on purpose,..that flight had Tommy's new heart on it (chills).
I went out and looked at the sculpture today and can't stop thinking about the families who lost their loved ones while doing their job and saving lives.

So, I offer a prayer of thanks for all of those in the medical field who have a passion for caring for others and saving lives. I am especially thankful for the amazing team of doctors and nurses who have been by Tommy's side for almost 9 years."

God is Good. There is a plan. Reading stories like this helps remind me of that when we are in those 'dark' hours. If you'd like to follow Tommy's page, go to carepages.com and then visit. The carepage name is ThomasEarl.

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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.