Care4Conway: Rough Move

Thursday, June 18, 2009

Rough Move

Connie finally fell asleep around lunch time and was awakened an hour or so later to be moved. He was not a happy camper. We tried everything we could think of and even a walk in the alligator wagon didn't calm him down. His late lunch came and he ate 1/2 of a dinner roll and some milk and juice and doritos (couldn't get anything else into him) and was much happier. He got on a portable monitor and was able to go around on the floor in our stroller and also walking (more like running!). He showed off and played pushing the automatic door buttons.

When we got back, he'd been moved again. All our stuff was down the hall and in a room where he is now the only patient!! Yay. That means Mommy has a window seat and he even has a little area to play and move around. Hopefully we'll get to keep this set up until Monday when we should be getting out of here.

They are talking like not interrogating the pacer until right before discharge. This baffles me and I still don't comprehend how his rate can be fixed at 100 when he's up and mad and screaming/crying. To me that means he's in flutter and mode switched, but I'm no doctor.

So, despite our somewhat stressful couple of hours, things are looking great. Just the fact that he had the energy to walk around for an hour is great! I wish they had a playroom or child life on this floor. He's confined to the 7th floor but there's not much to do other than walk the halls. This is tricky with him b/c he likes to go near doors he's not supposed to and he likes to bang on the metal cabinets in the halls near the doors of patients who are on contact precautions! I have to try to corral him in certain directions while holding his telemetry monitor!! It's kind of challenging to say the least. It's better than sitting in bed though, that's for sure.

Greg and MK are coming up soon and then tomorrow Cece will get to visit. I'm sure that will be a nice distraction for him.

3 comments:

H. James said...: You must be exahusted (Connie, too). I hope you get some rest tonight!!; June 18, 2009 at 5:56 PM
Unknown said...: Glad to see things are in a holding pattern.
I was curious. Does the pacemaker kick in at 100 if his rate drops below 100? The reason I ask is the Amiodarone will slow his heart rate.

Hang in there!
Lisa; June 18, 2009 at 6:19 PM
STaci said...: Gotta love the window side!! We are here and praying you get home soon and the heart rate stays regulated! Please call if you need anything at all!!

Love,
Staci Budde; June 18, 2009 at 8:56 PM

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.