Care4Conway: 6/21/09

Tuesday, June 23, 2009

Breathing Easier

Dr. Bromberg wanted us to come on in so he could look at him himself and do a pacemaker interrogation to be sure he's not back in flutter. He just doesn't trust the pacemaker settings to tell us he is any other way just yet (like over the phone transmission). So, we went in and Dr. Bromberg confirmed that he is NOT IN FLUTTER!!! He said his liver is a tiny bit firmer, but that is very subjective and he looks pretty good. He said we were right to call because at the this point, he is still at risk of it returning and we'd want to catch it early. His appetite is increasing so thank goodness for that. Hopefully we can just take it easy the next few days.

Hopefully it's Nothing

Last night, after his bath, Connie threw up. He also had a very hard time falling asleep and seemed like his breathing was more labored when laying down flat. This morning, he got up a little before 7 and is now already napping again!

Please pray that all these signs can be explained by the fact that he drank a ton last night compared to what he's been taking in lately so maybe he just overfilled his tummy a bit and that he's just catching up on sleep he missed while in the hospital.

I'm going to call Dr. Bromberg just to make sure. . .

Monday, June 22, 2009

We're Home

and hope to stay that way! We got out of there just before 11am today and he slept the whole way home. Once home, he drank a whole cup of milk, ate a whole slice of bologna and some cheese and pb crackers. Then he had some yogurt and a corndog! He took a little more nap while I ran errands and then the whole family went to Incredible Pizza to celebrate. There he drank a whole cup plus some of powerade! He's definitely not dehydrated now! He was fond of watching the big screen while he ate dinner. He is starting to like Thomas the Tank Engine. The whole time he was in the hospital, the Sprout channel was on and several times a day they show little Thomas episodes. Every time one comes on he says, "haaaiiin" (train). He was a little scared of the ride on toys (bucking horse, cars, carousel, etc.) at first, but did the bucking horsey and had fun. Now he's splashing in the little pool out back and asking to swing. It's so good to be home! We go Friday to Quest to do labs and going to see Dr. Bromberg next Monday to do an EKG and have him look at the pacemaker. We also have appointments standing with him for July 6th and July 16th, but they said not to cancel them just yet. He may want him back in on one or both of those dates too.

The Wheels are in Motion

Pacemaker Interrogation. . .check.
EKG. . .check.
Labs for INR level. . .check.
Talked to MD's about maintenance Amiodarone dosing. . .check.
Waiting. . .waiting. . .waiting. . .for a signature.

They say they are coordinating a follow-up visit with Dr. Bromberg, probably for a couple of weeks from now, and future labs, probably on Wednesday and then again next week.

Connie's off the monitor now and free to roam and go see the fish and go outside, etc. However, I'm afraid to leave the room for fear we'll miss the "green light" to get out of here!

I've got a bunch more pictures to put up, but I've already packed away the camera and will do it after we get settled at home.

Thanks again for all your prayers.

p.s. Our roommate (the Vianney bound one) ended up being moved back to the CICU yesterday afternoon because of the irregular heart beat and high heart rates. They are administering an IV medicine hoping to control it. If that works, then they will have to monitor him for 24 more hours and then make sure he tolerates switching to an oral med. He's here at least till Tuesday, which is lowering his spirits a bit since he was set to be released Sunday. Please keep him and his family in your prayers.

Sunday, June 21, 2009

Good News!

What a long night! Connie slept great. Went to bed at 9:15 and got up a little after 6. He only woke once or twice for a brief period. There was a little more activity in our room last night because his roommate is having some issues with irregular heart beat. Hopefully it is nothing.

Today, his nurse said she is kind of set up to have a pretty easy day so if things stay that way, she will hook him to a portable big monitor which will read off the floor and take him up to the playroom and/or garden on the 8th floor! How awesome would that be?!

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.