Care4Conway: It's been a while. . .

Monday, December 10, 2007

It's been a while. . .

I thought I posted an update last night but I may have forgotten to "publish post". Basically I was just writing to tell everyone that even though Friday and Saturday had considerable vomiting, both Sunday and today he only threw up about 1/2 of his first feed of the day and kept everything else the rest of the day and overnight down. I hesitate to post this wonderful news because as Murphy's Law would have it, every time I do, within minutes he pukes up his tube and all! Knock on some wood tonight that he'll stay asleep and that this trend of proving me wrong will end.

Speaking of sleep, he's developing some bad habits. He's going down around 7 or so and then waking up at 9 or 10pm and wanting to be up for an hour or so. Then he sleeps in so late in the morning. This needs to stop because Mommy needs her time in the evenings and because he has PT early on Friday mornings so he can't sleep in! Today he slept until 9:30! He ended up only taking one nap but it was about 4 hours long. Weird. Just when you get them figured out they change! I've been letting him sleep instead of feeding him his first feed at 7 while he's asleep. It wakes him up since it makes him vomit. I figured he's been doing better (less vomiting) if he's up for a few minutes and can get some good coughs before the feed starts. He seems to only throw up the first half as opposed to the whole thing if I feed him before/just when he wakes. Then only problem with waiting till he's up is that it's hard to get in 4 feeds before having to turn the pump on continuous at 10pm. I want him to get enough ML's throughout the day and to do so he needs to get that first feed early enough. Today I let him sleep but spaced the feeds every three to three and a half hours and I was able to get in four feeds and still give him a break for an hour before turning it on for the night. I'm sure this makes little sense and I apologize for boring you, but it's related to Connie so there you go. This website is all things Connie afterall!

There are a couple of new pics on the right side of the page. Enjoy!

3 comments:

Shari said...: Erin:

It sounds like things are "looking" up and there might be a trend of improvement as far as vomiting goes. Our son had the same issues and it was that darn NG tube. The pics are beautiful! He is so big now!

Praying as always!

Blessings.

Shari; December 10, 2007 at 11:23 PM
H. James said...: Oh Erin, your post makes unbelievable sense to me. My life still revolves around counting ml and time and trying to give Bailey a 'break' from feeds. I can tell you that while it hasn't exactly gotten easier, we have gotten very used to it & it has just become part of our everyday life. We celebrate the non-vomiting days, just like you!

I'm keeping my fingers crossed that Conway slept through without vomiting last night.

Your friends,
Heather, Tim & Bailey James; December 11, 2007 at 8:16 AM
Anonymous said...: Erin,
I can't help but chuckle looking at the new pictures, he really has quite a bit of hair - especially when you compare him to what MK had at this age. He's got way more than Claire has now at 16 months! Love the new pictures, they're just adorable, and he has such great expressions. I'm sure each and everyday brings something new for you to contend w/, but I want you to know that I'm amazed at how you keep it all together. It's certainly a testament to your strength. Keep up the great work, and we'll continue to pray that he makes progress to keeping his feeds down and his sleep patterns even out a bit more.

Love, Caryn; December 11, 2007 at 8:29 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.