Care4Conway: 3/23/08

Wednesday, March 26, 2008

Diarrhea

Connie has had loose stools for about 6 days now. He normally has one bowel movement every other day (since we've been home from MI) and now he has been having at least three every day and they are loose. The GI doctor wanted him to come in and so we did and guess what?! His weight is up! He was 22 lbs. 15.5 oz and last week he was 22 lbs. 8 oz. Not sure how that happened, but my guess is, that even though his stooling and vomiting have increased, that the weight gain can be attributed to the increased calories from the Peptamin Jr. (new formula). It is 30 cal/oz as opposed to 20 cal/oz of breastmilk. Of course, he's only getting about 4 oz of this new stuff per day, but I guess it's already making a difference.

Anyway, the doctor said that she feels like the formula is what is causing it. Apria Healthcare is who supplies the formula (you can't find it on store shelves) and they were out of what she prescribed so they sent a substitute. It doesn't have "prebio" or fiber, apparently two things he needs. So, after waiting a week and a half to get ANYTHING, they send the WRONG THING! Luckily we got some samples that will hopefully tide us over until we get the right stuff. If the loose stools continue past Monday, she wants to send a stool sample off for a culture and possibly start adding some sort of fiber powder to his milk. Thanks for checking in. Also, please add 5 year old Gerri to your prayers. She had her double switch today at the same hospital with the same surgeon as Connie, almost 7 months to the day of his surgery. She is recovering and has a long road ahead. Their family is not from this country, so it complicates things further. Please pray for them.

Sunday, March 23, 2008

Happy Easter!

We had an Easter miracle today! We met God at Assumption Church during the 10 am Mass. He came right up to us after Mass. First for a little background. . . I have been thinking about Connie coming to church on Easter for some time now. I don't know why, but it was very important to me for him to be there, for us to be there as a family, all together. We haven't been to church all together since a month before Connie's surgery last August. He's been homebound all winter, but the cardiologist said he could start going out in public now that the flu season is just about over. I guess one reason it was so important was because last Easter he was baptized and we had so many question marks about what the future would hold for him and now, one year later, he is getting back on track. He's here and that's all that matters. It feels like we've come full circle or something. Anyway, we all went to church and I was happy (then I remembered how hard it is to entertain a one year old for over an hour!).

They added extra folding chairs to the end of each pew and we were in the front row in a regular pew. Across from us, right as Mass was beginning, an older gentleman with a listening assist device came to sit alone in that one extra seat at the end of the pew. During the "peace" he reached across and shook my hand. I've never seen him before or met him and we've been attending this church for five years. After Mass was over and people began to leave, he came up to me as I was holding Connie and asked what was wrong (meaning what was wrong with Connie. I guess he could tell something wasn't *normal* because of Connie's NG tube). I answered, "His heart." I pulled his shirt down a bit so the top of his scar showed and the man very matter-of-factly said, "God spoke to me and told me that it is time for this child to be healed. He told me to lay hands on him so that he might be healed." and then the man put his hand on Connie's back and said, "In the name of Jesus Christ be healed." and then he walked away. It's an Easter Miracle!

Lord, thank you for sending your servant to us today in order that you might heal our precious boy. We believe that you have the power to heal anything, no matter how big or how serious. We thank you for getting Connie to this point. We know that it is because of you that he is alive and getting better everyday and we look forward to watching him continue to grow and lead a happy, healthy life. In Jesus' name we pray, Amen.

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.