Care4Conway: Contagious

Monday, April 21, 2008

Contagious

I guess I've been hanging out with Connie too much as the doctor has put ME on heart medicine! My heart is fine, but he feels like my 'sinus' problems are really migraines so I'm restarting meds for high blood pressure as a preventative. The beta blocker, Atenolol, should help. We'll see. I say restarting because I was put on Inderal, a similar drug, back in 2000 to control/prevent migraines. I stopped taking it sometime in late 2003 as my headaches were virtually non-existent at that time. I have a crazy bad cold or sinus infection or something along those lines and thought I should probably see the doc since it's been off and on for at least a month. I thought he'd give me an antibiotic and send me on my way. Boy, was I surprised?! After talking more he came up with this theory. I'd think he was off his rocker except for the fact that my beloved sudafed and tylenol have not been touching the 'sinus' headaches I've been having lately.

Connie's doing well and doesn't seem the least bit phased by the procedure he had last week. I'll just be glad when he can finally have a real bath again! He HATES sponge baths. . .and he's terrified of having his hair washed in the sink. The last one he got he literally got so mad and worked up that he threw up. It made me think, "Was it worth it?" I mean, we bathe him so he doesn't smell like puke and he pukes shortly after the bathing so maybe it's not worth putting him through the torture of it all :)

He has been really snotty lately (clear, like always). With this, we typically see a reduction in his oral intake (like from barely nothing to nothing!) and an increase in his vomiting. This time is no different. But today I saw two new teeth, incisors, I think, popping through. Hopefully once they are in a bit more this congestion and drainage problem will go away. Teething seems to be the only explanation we ever can come up with for these symptoms. We are in the process of weaning him off of breastmilk completely and working toward the goal of getting him off of the overnight feed. He now gets his new formula, Peptamin Jr., at 100% strength for the overnight feed. His daytime feeds are at 25% Peptamin Jr. and 75% breastmilk. We'll do this until Friday or so and then try him at 50/50 for a week and then 75/25 and then hopefully by the end of May he's at 100% Peptamin Jr. 4X/day and nothing overnight. The Peptamin his a lot higher calories per ounce than breastmilk so he won't need quite the volume. We're also hoping that he'll wake up hungry in the morning once he's not getting fed throughout the night so he might be more motivated to try to eat orally. This is a long process and quite trying on the patience. I've been weaning down on pumping and digging into my freezer stash of breastmilk. I'm now only pumping once a day and hope to be done soon. Since I'm on that new medication, I have to dump all the milk I pump :( I told you all we'd need that stuff in the freezer! We were told at his last OT session not to be surprised if he still has this tube a year from now. Many people have been asking lately, and I have been growing impatient with his progress, so I just thought I'd tell you where he's at with that and what we have been told to expect. I'm just thrilled that he's doing so well cardiac-wise because the longer we can put off surgery, I think the better chance he has of coming around on eating. If he's got unpleasant stuff going on and people are putting things in and on him that don't feel good, it's that much longer before he trusts us that it's okay to eat. So, it's a good thing that it looks like we're in the clear for several years that way. Thanks for looking in!

1 comment:

H. James said...: Great video! He looks like a very normal and healthy little boy! Hope the teeth come through soon and he gets less snotty. And hope headaches improve, too! Hopefully the transition to all day feeds and off breastmilk goes smoothly and you can stop pumping. I imagine that will be a big burden gone for mama!
Thanks for the updates.
-Heather James; April 22, 2008 at 8:03 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.