Care4Conway: Another Bug

Wednesday, November 5, 2008

Another Bug

Connie woke up in the wee hours of the morning today absolutely on fire. I have never felt him so hot. The reading on the thermometer that I took under his arm was 102.22. His face and arms were bright red and you could feel the heat through his pajamas. He shows no other symptoms other than poor appetite and fussiness. I called the pediatrician's exchange and the nurses from Children's said that unless he was having high fevers for more than 72 hours or unless it reached 105, then he was probably just fighting some sort of virus. I think we found out tonight what sort of virus it is. He had a VERY loose stool so there must be something enteral going on. That and I think his throat must be sore because yogurt and milk or water are just about the only things we have been able to get in him. Today his eyes were starting to do that sunken in thing but they said as long as he has one wet diaper every 12 hours he's not dehydrated. For now we're just treating him with tylenol. His fever did break after about two hours last night because he woke up again in a pool of sweat. After some clean sheets and snuggling with Mommy (he was mad at Daddy for taking his temp again) he went back to sleep until 5:45. Man, this daylight savings thing is killing us with their early risings. I'm up anyway getting ready for work. But the getting ready for work is much harder when they are awake! He didn't have a fever all day today. I gave him some more tylenol before bed since fevers tend to come back in the evening.

He's been approved for Synagis and was supposed to get his November shots on Monday, but all of a sudden the insurance company is questioning whether they'll cover the home health care nurse to actually give the shot. This is getting so ridiculous. Ever since we switched to Cigna (their premium plan, mind you), we've had nothing but headaches with insurance. First they wouldn't cover his new dose of Enalapril b/c they said he shouldn't need that much. Then they wouldn't cover Mary Kathleen's last dermatology appointment. Then the trouble with getting the Synagis vaccine for RSV and the latest today was a bill from the ped for his last two appointments and the follow up on Mookie's ears for a total of $750 that they refused to pay! I've gotten it all worked out, it is just really time consuming and frustrating to get bills for every single medical thing we've had the last two months.

Connie is going to the eye doctor tomorrow morning to try and figure out why he won't wear glasses anymore. I think it is because God has healed his eyesight and he can't see anymore looking through the lenses. I guess we'll find out tomorrow. I'm pretty sure it's not a comfort thing b/c we had the glasses adjusted again at the optometrist and they fit well.

Today we heard lots and lots of talking. Now that he's gotten this gross motor thing down I think he's really going to take off with speech. He's been calling, "Beeeellle" (our dog) and whenever the phone rings he says, "Heh oh" and then when he plays with the phone he says, "Haaaah" and "Baaah". He's pretty mad that we've packed up half the toys and there is virtually nothing left upstairs to play with. We haven't been playing much downstairs either b/c Greg is still painting the shelves that line the back wall. We've put our house on the market (bad time, we know). It is a good time to buy though and we've got our eye on a bigger house that's at a great price. We don't have to move, we'd just like to take advantage of the opportunity to get a lot more house for not a lot more money. Please keep us in your thoughts and prayers as we try to keep the house in "show" condition (not likely) with a dog and two small children. I'm worried about getting a call to leave when Connie's just gone down for a nap and all of the other inconveniences that go along with selling and buying a house.

I guess that's all for now. I'll try to update tomorrow after his eye appointment and PT appointment. Sooner if anything further develops with this fever situation.

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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.