Care4Conway: Night

Friday, May 8, 2009

Night

Docs are getting ready to round here in a minute. I left last night around 6:30 and Greg stayed the night with him. I have gotten smart enough to realize when I've reached my limit so in order to provide the best care for Connie, I had to take a break. Plus, my little MookieRoo is missing her mommy. She and I went to Wendy's for dinner and a frosty and then home to let Belle out and go to bed. I got a shower in my own shower and even got to dry my hair this time! We got up bright and early, stopped for a donut on the way in and got here by time for morning rounds at 6:30. She and Greg are snuggling on the parent couch thingy in the room and Connie is snoozing away. He had a great night. His new little roommate is very quiet. Nary a peep out of him. He was wired again so he didn't fall asleep until 11:15. He did get a spongebath and clean sheets and pajamas so that was nice. The big news about the overnight is that his respiratory rate has been down where it was even on the Milrinone, meaning he's not showing signs of slipping back into the severe cardiomyopathy (failure) like he did last time we stopped milrinone. Dr. Checchia told me last night that they didn't anticipate him having difficulty with it this time because his rhythms are normal now, where they weren't the last time he was taken off. The "shelf life" of that drug is like 3-6 hours they say, so if we were going to see him decline and the failure worsen, we would have seen it by now.

We'll update again after we get the plan for the day.

3 comments:

H. James said...: Catching up, again. I have been sans internet access for a bit for boring reasons beyond my control, but wanted to check in on Connie. Everything sounds much better. At least NOW the shared room might mean you are closer to going home. I hope everything goes well & you are all home soon.
I'm off to send my laptop back to HP for some "repairs", so I'll check in when I can.; May 8, 2009 at 7:57 AM
L. Pappalardo said...: Just keeps sounding better and better!! Any idea of when you will be sprung?; May 8, 2009 at 8:47 AM
Anonymous said...: Erin,
I received this forward today and thought of you. I am keeping up with Conway's progress and know that God gave him to you for a reason. I hope your mother's day is spent at home with your wonderful kids!
Katie Kilker
A Newborn's Conversation with God

A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"

God said, "Your angel will be waiting for you and will take care of you."

The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."

God said, "Your angel will sing for you and will also smile for you.
And you will feel your angel's love and be very happy."

Again the small child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"

God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."

"And what am I going to do when I want to talk to you?"

God said, "Your angel will place your hands together and will teach you how to pray."

"Who will protect me?"

God said, "Your angel will defend you even if it means risking its life."

"But I will always be sad because I will not see you anymore."

God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."

At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."

God said, You will simply call her, "Mom."; May 8, 2009 at 8:59 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.