Care4Conway: Letter to Connie's OT

Thursday, December 6, 2007

Letter to Connie's OT

Tonight while in the bath, Connie played more than ever. Splashing and laughing and guess what else? He desperately grabbed at the cup we use to rinse his hair and drank out of it. That's right, he won't eat or drink anything nourishing, but he'll drink bathwater! I told Greg and he laughed and joked that he didn't care if he drank gasoline. It was still progress. I saw two really good swallows and that was after he accidentally got a mouthful and coughed a lot--he still wanted more. I got some of those wagon wheel finger foods and he's been playing with those and the puffs but his favorite is a strawberry nutrigrain bar that he gets all gooey and stuck to his fingers and then mouths all during mealtimes. Tonight he had some cheerios that stuck but I don't think he actually got those into his mouth. The motor control is difficult for him but I don't dare try to do it for him. He doesn't even want to take it out of my hand if he drops it (seems scared) and he wants to find it himself again. I'm tempted to get some milk the next time he takes a bath and see if he'll drink it out of the same cup. Can you believe he will drink the bathwater? He has been making hungry noises with his mouth more today. I'm sure it is because he has barely thrown up. He threw up a small amount after his 7am feeding, a medium amount after his 11am feeding and nothing since (it's now 9pm and two feedings later).

Anyway, I just wanted to pass on the good news and couldn't wait until next Tuesday! I was going to give you trouble and tell you that in the "race" between you and Deb, she was winning because he is making remarkable progress physically. Apparently, though, he likes you and wants to impress you and didn't want me to tell you that and hurt your feelings!

Erin Beckemeier

6 comments:

Anonymous said...: Erin,
What a difference a day or two makes. This is such an aweseom letter, it's great to hear how well he did. Chuckling out loud that he drank bathwater! Whatever works! And I'm so happy to hear that he's keeping feedings down better. The power of prayer, it's an awesome thing...

We've had our first snow, about 4 inches, I guess that means that winter is really here. I shouldn't complain, it is the beginning of December, it could have been here a month ago. I hope you have a great weekend and love to hear about his progress!

Love ya, Caryn; December 7, 2007 at 8:19 AM
Anonymous said...: I was so happy to read this letter. Conway is surely making progress. I just watched all of your other videos that I had never seen, and Conway "talks" more than my March baby does. It's so great to hear him so happy. You all are always in my prayers.

Sincerely,
Stacie Kuhlman
Texas; December 7, 2007 at 10:00 AM
Shari said...: Erin:

I am excited he did that, even if it was bathwater. It is a step in the right direction. Silly boy! :-)
I hope he continues to progress. Try not to get discouraged, he will get there.

Lovingly and prayerfully,

Shari; December 7, 2007 at 12:18 PM
Kim Froehlich said...: Erin,

What a funny story! I'm so glad to hear Connie is making such progress! Hey, at least it's something going down and not coming up!!

I'm also glad to hear the good news about Mary Kathleen's little mole. Your family is deserving of some good news!!

Connie, keep up the great progress and I will check in next week.

Lots of Love,
Kim Froehlich; December 7, 2007 at 4:39 PM
H. James said...: Hooray! Hooray! Hooray! Way to go with keeping your feeds down & sampling the bathwater! We are shivering here in Wisconsin, but ecstatic for your progress.
Heather, Tim & Bailey James; December 7, 2007 at 6:50 PM
Anonymous said...: Erin, Last night your Mom and Dad came into Dennys Resturant and I am a server there and we were talking about Conway.And they said I could come here to see his story and see pictures of him.I just wanted to let you and them know that I did visit the site and that Conway is very cute just like they said.That my family and I will keep him in our prayers and I will keep coming back for updates. from Billie lanniebrown@yahoo.com; December 12, 2007 at 4:54 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.