Care4Conway: Small Miracles

Wednesday, November 28, 2007

Small Miracles

Sometimes in the midst of the daily grind, it is easy to overlook the everyday miracles. At least for me it is. Yesterday we got good news and bad news. One prayer answered and another one that God's timing just isn't ready to take care of yet. Dr. Tychsen's office called and said that Connie's eye testing last week showed his eyes are working "pretty well together" and he doesn't want to do anything further at this time. This is fabulous news. God has spared Conway's sight and we are so thankful. When we go back in May they will hopefully be able to do some additional diagnostic testing. They mentioned measuring the muscles or something like that. The older the child gets, the more they are able to tell. We still are asking for prayers that he will not require glasses at that time.

Dr. Brady called back. She said that if Connie were to get the surgical G-Tube that his pacemaker will have to be moved to the other side--yikes! So much for a 24 hour hospital stay on that one. She is going to talk to Child Development to see if we can't move up the Swallow Study since he is going backward and getting more averse to oral stimulation. Once we find out if it is safe for him to eat, we may try to pull the tube completely and see how he does. The downside is that we only get 24 hours to give him a trial run. If he doesn't eat enough, we'd have to put the tube back in. I asked about the super high calorie fortifier and she said, "No". She said that with the meds he is on he needs more "free water" and that 4.5 oz of liquid wouldn't be enough. Doubtful he'd be able to drink 20-30+ oz in a day. Right now he can't even swallow 1/15 of an ounce. She did say that we could let him go without the tube all day and then drop the tube every night and give him most of his calories overnight. We are continuing to pray for a miracle that he will be able take enough orally during the swallow study and continue to improve dramatically so as to actually be nourished by what he takes orally.

3 comments:

Anonymous said...: Erin, I thought I recognized that prayer-it is one I used to say daily at mass. I will begin again saying it daily for Connie. I really miss both children - after being out of town 10 days, it's the pits to come home with a bad cold and not get to see them. I should be okay in a day or so with a face mask to see them. Let me know if and when you decide to pull the tube for one day.
Remember, God is with you every step of the way on this worrisome journey and Dad and I are here for whatever we can do to help.
We are so proud of your strength and faith - youare an inspiration to many, Love, MOM; November 28, 2007 at 6:10 PM
Anonymous said...: Erin,
I talked with my mom this morning and she said she saw you after the parish mission the other night and that the entire church prayed for Connie. I know that she feels honored being able to offer up to God prayers for Connie's continual healing. Praise God that his eye test came out so well, I'm sure that's a relief. I'm sorry to hear that there are still struggles with his vomitting and swallowing. We'll continue to ask God to place his healing hands upon Connie's body to help him swallow and be nurished. I wish there was more I could do, but for now storming Heaven with prayers is my objective! I think of you and your family often and send you huge hugs from Omaha.

Love to you and the family, Caryn; November 29, 2007 at 8:37 AM
Shari said...: Erin:

I am so thankful for the small miracles. I have been praying for Conway so much that his oral aversion would be taken away miraculously and that he can eat again. And no more tube! The new pics are wonderful. May I ask a question? Do you have a picture of Celeste you can put up? I have never seen her and would love to if that's OK?

Loving and praying from afar!

Shari :-); November 29, 2007 at 4:52 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.