Care4Conway: 10/12/08

Saturday, October 18, 2008

Connie is Cooperating

He's getting more and more cooperative with every breathing treatment. I snapped a pic last night of him just after his treatment ended. He was also helping brush his teeth! Never thought we'd see that day.

Thursday, October 16, 2008

Connie's Got Skills!

According to the DAY-C test, Conway scored at a 19 month level for physical development and his adaptive behavior and self-help skills are at an 18 month level!! He's right where he should be--whew!

It was so fun to see all the therapists in one room today. They were just in awe at our little man. He spent equal amounts of time making the rounds to everyone interacting on an individual basis and showing off his tricks and trying to ham it up for everyone. At one point, I told him to show them what he does when Mommy tries to change his pants and he got down on his back and started scooting backwards across the floor, just like he does during diaper changes. He laughed hysterically the whole time he was doing it, knowing he was making them laugh. It was so cute. That definitely convinced anyone who may have had a doubt that his receptive language skills are perfectly fine! He was so busy that for awhile his lips were noticeably blue. It was the first time I had ever seen that on him so I asked the rest of the team what they thought and they all agreed. I lost it. I started crying right there in front of them (thankfully only two of them were still here!) because I read a lot about heart kids and how when they are older, many of them have difficulty keeping up with peers at play and struggle in normal gym classes, etc. I guess I thought that Connie wouldn't be one of those heart kids and that was a realization for me that maybe he will be. I guess I was just in a celebration mode and reflecting on what a miracle he is and how far he's come in the last year and then to be looking at blue lips. . .it sort of took the wind out of my sails. I'm sure it's just because he's got some yucky lungs right now (thus the breathing treatments) so it makes sense that his O2 levels might be low during an illness. Still it's not pleasant to think about. I'm going to try not to dwell and just take it one day at a time. I'll probably let the doctor know about it tomorrow, but I'm sure they'll say just watch and keep up with the treatments and keep them posted. Stay tuned. . .

Wednesday, October 15, 2008

Never a Dull Moment

Connie had a runny nose all day yesterday and started developing a cough as well. He got up at 1am and didn't go back to sleep until 4:30am! We tried everything. He and I ended up watching some Pinky Dinky Doo on the computer and vegging on the couch for awhile. I gave him some graham crackers and raisins and ice water and you would have thought he hadn't eaten in a month. When I unzipped his pajamas to take his temperature under his arm, I noticed some "pulling"--drawing in around his ribs with each breath. I also felt like his breathing was labored. He was happy but couldn't sleep and it seemed like being upright was easier for him to breathe. He was very "junky" sounding. To make a long story short, Greg took him to the pediatrician this afternoon and we now have a nebulizer and Connie is on Albuterol and Pulmocort. He got his first breathing treatment in the doctor's office and immediately had relief and had clearer sounding lungs. Granted, he screamed through the entire treatment, which takes close to 10 minutes to give. At his evening treatment, we used a different head on the machine. Instead of the mask, we used a straw-like attachment and it was received much better. Say some prayers that he'll cooperate for these treatments so that he'll breathe easier. Also, tuck my mother in your prayers as she is recovering from pneumonia. She should be discharged from the hospital sometime tomorrow after a four day stay.

His IFSP meeting is tomorrow afternoon. It will be such a relief to hear again how great he's doing, but it will be bittersweet as it may be the last time we'll see some of his therapists. We are so thankful and feel so blessed to have had such wonderful individuals in our life the last year.

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.