Care4Conway: Great Morning

Tuesday, May 5, 2009

Great Morning

Connie has had a great morning and has had NO EXTRA NAPS! He's been up since about 7:35am and had a visit from Dr. Bromberg right after breakfast. He thinks he looks more active and given the fact that it is noon and he's just now ready for a nap I'd say that his endurance is definitely greater. They decreased the milrinone this AM and right about now are scheduled to turn off the drip entirely. I even convinced Dr. Bromberg to write that if his line should become occluded somehow, they are not to place another IV! As long as he keeps eating and drinking it would be okay to go without IV fluids until tomorrow midday so hopefully we can avoid any more pokes than absolutely necessary. We know he'll be getting his INR level checked tomorrow and again on Friday. We'll be seeing Dr. Bromberg in the office on Thursday and possibly on Monday, but he says I can just call and tell him how he's doing and then we'll be set for cardioversion procedure on Tuesday. This is all IF he tolerates being off the milrinone for at least 24 hours! We know our little boy likes to throw a monkey wrench in our plans most times, so we're not placing any bets. That is just what we'd like to see happen.

In Mommy news, I got offered a massage today and I took them up on it! I got about 15 minutes of peace and Connie sat and played nicely with Nurse Molly while I was gone. What a relief that was. I also received Communion and prayed with the chaplain for Connie's appetite and tolerance to the reduction in meds. This evening Dr. Bromberg is going to increase his Enalapril again to a higher dose than what he was on at home before all this started. His hope is that this will be enough and we won't need Milrinone again.

For breakfast he had a few bites of scrambled eggs and 4 oz of OJ, only because I forced it. All he really wanted was the fritos leftover from last night. Same for lunch. He did drink almost 7 oz of OJ, and ate almost a whole bag of baked lays chips! What is it with the chips?!

I take back the nap thing. He changed his mind.

The milrinone just got turned off. Start praying!

Edited to add: I forgot to mention that Dr. Bromberg also ordered a 12-lead ECG to have on record so that the next time this happens he will have something to compare this episode to. We are going to be looking for a stethoscope for at home to start regularly monitoring his heart rate .

1 comment:

Natalie Bourque said...: that's fabulous. praying that everything continues to move forward...natalie bourque (brittany's mom, ltga, vsd); May 5, 2009 at 1:06 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.