Care4Conway: 4/27/08

Saturday, May 3, 2008

Eating Totals

Here's what Connie ate today:

7am: 7 spoonfuls of apples & blueberries
11am: ? bites of cream of wheat mixed with strawberry syrup/sauce
3pm: 1 and 1/3 jars of mangoes and fruit medley
5pm: 2/3 jar of fruit medley
7:30 pm: 1/2 jar bananas & plums

He's had a sippy of water with him all day and at meals he's been given peptamin to drink. He's doing better with the peptamin. At least now he's not making the face that says, "What is this? Where's my skim milk?"

Just thought you guys could say a prayer asking God that this pattern continues and his oral intake continues to increase. He's been without his tube since late Friday morning. I've put in a call and emailed his therapists about "the new plan" so we'll see what tomorrow brings. One day at a time, right?

Are You Sitting Down?

Because you won't believe what I'm about to tell you. Connie just ate one and one third jars of baby food! Doesn't seem so great for a 14 month old, but considering the most he's ever eaten is a couple teaspoons, this is unbelievable. We're talking major milestone here. Yesterday he threw up his tube and instead of replacing it, we tried orally feeding him b/c they always tell us to take advantage of the opportunity for him to eat without something in his throat. Well, he was a bit more receptive so we kept it out and fed him again orally before bed. When we tried to give him his meds he threw up b/c he didn't like the taste of the digoxin. This morning, I increased him to 7 babyfood spoon dallups (sp?)and he took it. He isn't drinking a ton, but he is more willing to drink the peptamin every time we give it. Then today after his nap, we sat him back in the chair and I started with seven dallups and he just devoured it so I kept going and he finished the entire jar! I stupidly tried to give him some meds orally and he threw up again. I didn't want him to have that taste in his mouth so I gave him some fruit medley babyfood and he had another 1/3 jar. I put the rest of his meds in some water and gave him that in a cup. He proceeded to throw all of it up but drank some plain water after that. This kid is amazing! We're going to keep it out and try again in an hour or so and see if he'll eat more. We're just playing it by ear right now and praying for God's will and guidance.

A big thank you to Connie's fan club for braving the gusty winds and cool weather to come out for heartwalk this morning. It was great to see Grandpa George, Great Aunt Barb, Meghan and her friend Emma, Nicholas, Mary, Clare, Cece, Mary Kathleen, Kathy Brown, Judy Schoene, Mary Ann Lyons, Carol Stadler, the Dietrichs and Aunt Julie. Connie even did a little walking (holding on to my hands, of course) himself. Your time and donations to the American Heart Association mean so much to us. And yes, my goal for next year is to get his face on one of those Survivor posters. He's more than a survivor, he's thriving!

Tuesday, April 29, 2008

Compliments

I had to share this heartwarming compliment that Connie received today from his Occupational Therapist, Carla. We were finishing up his therapy session and gave him a peanut butter cracker. He excitedly took a bite and promptly gagged and threw up. He proceeded to gag and choke on phlegm for a couple more minutes before finally collecting himself. He immediately was playful and willing again to keep trying to eat (we didn't make him do the cracker again). She said, "Wow. He's got such a great personality. He just gets right back up on that horse every time, doesn't he? It just amazes me that he's so willing." I shared with her what Deb, the PT, said about him last Friday about being so impressed that he's willing to try everything she asks and isn't fearful of trying new things. Carla said that most kids have a lot of behaviors and crying and get upset when they throw up. Not our Connie. He just carries on. Then Carla said that that trait of getting back up and dusting off will serve him well as he gets older. That got me to thinking that maybe that's one reason God's letting us keep him here with us. Because we can learn from him. He's not 14 months yet and has already taught us so much.

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.