Care4Conway: Good News All Around!

Friday, November 9, 2007

Good News All Around!

Today was a great day and very reassuring for us. First we saw the GI doctor where his weight has again increased and she is very pleased with that. We told her about his progress with oral motor stimulation and what the child development people said and she was even more impressed. She said they are usually the ones pushing her to have the surgical g-tube placed in order to get rid of the ng tube but if she said they must really have hope for him and that they are not usually that optimistic. That made me feel good. I told her that they wanted a goal of his to be to get onto bolus feeds (like every three hours rather than continuous) so we changed him over today. He will get 100mL at 7a, 10a, 1p, 4p, 7p and 10p. If he throws up less than an ounce each time (less than 1/3 of the feeding) then in about a week we will try giving him 120mL every four hours for a week or so and then if that goes well we'll try the 150mL just five times per day. That would be our goal. I am to call her in about a week to let her know how it is going or sooner if he's not tolerating his feeds.
Next we had a Physical Therapy Evaluation by First Steps. The therapist came to the house and I had to wake Connie about 1/2 way through his nap so it took him a few minutes to really get into it. She was very surprised after reading the therapy notes from the hospital how much better he was doing now. Rather than rating his skill level at a certain age range, she was more comfortable just labeling him as "a weak baby" right now. He is doing some things around 4 months or 5 months, but he has a lot of emerging skills that he can't get full credit for on the rating scales because he doesn't do the entire skill or task. We're focusing now mainly on trunk and head control. His legs and lower body are stronger than his upper body and torso. She gave me lots of positions to work him in and ideas for home therapy. Monday we will develop a plan for future therapy visits and I'll get the report in writing about today's visit.
Overall it was a great day for Connie. Everyone who sees him is impressed. Even other parents in the waiting room! Oh, and the Synagis shot is scheduled to be given Tuesday. Finally!
Side note for all parents out there: There seems to be a consensus among those in early childhood that the bumbo seats and bebe pods are not very beneficial. Everyone who has dealt with him since we've been home seems to agree. They don't help a child learn to sit at all. They do help children develop head/neck strength, but that's about it. So, if you're on the fence about buying one, skip it.

No comments:

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.