Care4Conway: Never a Dull Moment

Thursday, May 29, 2008

Never a Dull Moment

Just when we thought Mr. Miraculous was on the mend, he decided to throw us for another loop. Last night he was very hard to get to sleep. He was so tired but seemed like he couldn't get comfortable and everytime he'd settle into sleep he startle, almost like a newborn. At 11pm he woke up for about an hour and then at 4 am he woke up and threw up all over himself, his bed and his monkey. It was his strawberry/apricot bedtime snack so I thought maybe the strawberries were just too hard for his digestive system. I didn't understand that since he had them a few weeks ago and did fine, but figured maybe it was really bothering his reflux or something. After he woke up for the day, he wouldn't have anything to do with eating breakfast. He did chug 4 oz. of milk which he never does. We're lucky if we get 1-2 oz. in at each meal so this was unusual but I figured since he didn't eat anything he was filling up on milk. I secretly made it 50% half and half so it was still a ton of calories. Well, five minutes later he coughed and puked his milk everywhere. We had our follow up at 10 so I figured I'd tell the doctor about this and she'd say he had the stomach flu and send us on our way. By the time we got there, he had diarrhea too. After looking at his labs from St. John's she decided she wanted a urinalysis and more bloodwork to try to rule out something bacterial. She was thinking of putting him on Omnicef, but didn't want to aggravate the diarrhea problems with an antibiotic so she sent us back to St. John's to the outpatient lab. She said that she most parents aren't thrilled with the techs at DePaul when it comes to drawing labs on little ones. There was a big accident that closed two lanes just north of Dorsett so we sat and sat and then finally got there around 11:30. We didn't leave until 2:30! His blood draw went great (well, as great as it can for a baby who doesn't want to have a needle stuck into his arm for the third time in five days) but when we went to collect the bag with the urine sample, his diaper was soaked and the bag empty. He had had a whole small juice box at the ped's office but refused the water he was offered at the lab to try to get him to make more urine. Then he fell asleep. Then Mookie was hungry so we went to the cafe while he slept. I bought him an V8 fruit drink and after he woke up he drank some while we played puzzles for a minute in the lab waiting area. Another bout of diarrhea later the bag had urine and we could turn it over and get home. It made for a very long day. Mookie was so good with all the waiting and such a big girl to carry her drink and her food in the cafeteria. Poor Connie fell asleep on the way to both places and woke up every time we got out of the car and then slept for about an hour at St. John's and then fell asleep again on the way home. We went to Grandma and Granpa's to visit because Grandma hadn't seen Connie in about three weeks. He wouldn't eat his late lunch but he did eat a 1/2 cup of vegetable beef soup and 1/2 a saltine. He got increasingly clingy and whiny and fell asleep again. I thought he seemed rather warm so I took his temperature a few times and it kept climbing. He normally runs in the low to mid 96's so by the time it was 98 I gave him tylenol. He started to go back down and perked up a bit. He had a blowout diarrhea diaper so we changed clothes and came home. I did get him to eat about 1/2 cup of vanilla yogurt while I gave him his meds so his overall intake today was 1/4 of what it normally is. I'm a little concerned about his weight too. At St. John's during his inpatient stay, his weight on their scale was 22 lbs. 10 oz. I was a little bummed, but chalked it up to it being a different scale. Well today at the ped's office (again a different scale) they got him at 22 lbs. 4 oz. That is the exact same weight as in the beginning of March on their scale at his 12 month check-up and this time it was with clothes and a full diaper! This illness is coming at a bad time, when his weight is being super scrutinized. The GI doc threatened that if he went below 22 lbs. 1 oz that he'd not be able to keep the tube out. Hopefully she'll either make an exception since he's been ill during his trial run or else he'll pack on some pounds before the big weigh-in on June 10.

He's resting more comfortably tonight and has not vomited since this morning so hopefully we're on the tail end of this virus. The ped's office called to say that the labwork all came back and his numbers were still dropping so that's a good sign. No antibiotics. I'll continue to monitor his temperature and if he runs anymore fever I'll call and see about the next step.

Thanks for looking in everyone. We appreciate your thoughts and prayers.

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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.