Care4Conway: Recap of the day and further explanation

Monday, June 15, 2009

Recap of the day and further explanation

So today Connie was not himself. He fussed if I left the room, fussed if I didn't hold him and fussed if he had to be upright for any length of time. He hardly touched his food and says he's all done after about one minute of an sort of activity other than laying on the floor. He started this some on Saturday, but we thought he was just tired. Yesterday was a little better but today was the worst. I thought to myself that I don't want to let his heart get as bad as last month so I called. The worst they could tell me was I was overreacting or something. Nurse Kelley came on the phone and said to send in a pacemaker transmission. This was about 4pm. I had to go to my parent's house to do so because we don't have a land line here. I called the office as soon as the report was complete and Kelley was already pulling it up. She sounded a little like she was in thought about it and then asked if she could have the Dr. call me back after he'd taken a look. She said nothing looked "horrendous" but she just wasn't sure. She called back five minutes later and said, "Come on in." I knew that wasn't good. MK, Connie and I sped down hwy. 70/270 to St. John's. We went straight in and got "the big room" (the one that has space for the cart that has the pacemaker interrogator machine. As soon as she hooked him up they could tell he was in atrial flutter again. Dr. Bromberg tried to convert him right there with the machine but was unsuccessful. He got on the phone with Dr. VanHare at Children's to set up a transesophogeal echo and cardioversion. He said he didn't think Connie was needing to have it done right away but also knew he wouldn't tolerate two weeks of anti-coagulation first because last time proved to us that his heart function deteriorates to much for that. Dr. VanHare's primary concern is the anti-coagulation levels post-cardioversion so his plan would be to admit Connie after the procedure for how ever many days it takes for his INR levels to get to a therapeutic level. He would even put him on Heparin in the hospital. Dr. Bromberg, with our quality of life in mind, suggested that as long as he's doing as well as he's doing now (sleeping, eating without throwing up, etc.), our plan should be to start him on coumadin now so that for the next few days he can get his levels up and THEN go through with the cardioversion on an outpatient basis. We like that plan better too! So, for now, the plan is to give 3mg of coumadin tonight and tomorrow night and then to give 2mg on Wednesday night. Then Thursday we'll take him in and they'll proceed with the TEE and the cardioversion (shock to get his heart back into normal sinus rhythm). This is the same thing he had a month and a half ago, but this time, we think we caught it earlier. For a little background, we've been periodically checking Connie's heart rate for that magic number of 100. We've been told that if he were to go into flutter again that his pacer would kick in the mode switch and automatically pace him at 100 so that would be our red flag. Well, we've been checking him and even today we are not getting 100. Dr. Bromberg said that the mode switch "isn't working". We don't yet have an answer for this. We are quite frustrated. Kelley said that the report shows that it "switched" some 19 times and then all it says now is "suspended". Dr. Bromberg said that looking at the report from the pacer, it shows several days (like more than 4) of high rates. Poor baby. No wonder he is asking to be held and doesn't want to play for more than a few minutes.

The other bummer, and it's a big one, is that he's now going to have to start amiodarone, a strong anti-arrhythmia drug. I'm taking Dr. Bromberg's advice and not looking it up to read all the horror stories about it. I did ask what we should watch for and he said we wouldn't see anything if something were wrong. The main side effects include issues with the thyroid, liver function, lung function and hematologic function (blood counts). He'll have to do a number of labs on Connie to monitor these areas and if need be, prescribe more meds to deal with those side effects. He'll also be hypersensitive to the sun, which shouldn't be a big deal for us b/c he has a rash guard on in the pool anyway so his scars wouldn't discolor and we practically own stock in coppertone with all the sunscreen we buy.

Coumadin (the blood thinner) has also been started and will probably be taken for at least three weeks or so following Thursday's procedure.

I guess this is why I haven't heard back about my interview yet. I guess God has more important things for me to do with my time!!

We continue to beg you for your prayers and ask that you specifically pray for Connie as he undergoes his TEE and Cardioversion. Pray that God will remove his fear of doctors and nurses and that he'll keep Connie comfortable and healthy until then. Please pray this prayer as often as you can over the next week.

Thank you,
Erin

4 comments:

The McCrums said...: Prayers are coming your way.....The McCrums; June 15, 2009 at 9:54 PM
H. James said...: Keeping you all in our thoughts...; June 16, 2009 at 7:23 AM
Doug and Kristin Dalitz said...: You all continue to be in our prayers.; June 16, 2009 at 10:00 AM
Unknown said...: Erin,

I'm so sorry Connie is going through all of this again.

Eli took Amiodarone from age 5 months until just before his 3rd birthday with no problems.
Most of that time he was on a dose of 200mg daily, which must be high because the pharmacist would call the PC everytime he wrote a new prescription. lol

We did routine blood tests for liver, thyroid and lung function and avoided the sun. There is also a danger of eye damage. We went regularly to test eyes-it can cause crystal formation similar to cateracts. This is worsened by sun exposure also.

We had to do hat, sunglasses and sunscreen which is difficult at that age so we just avoided the sun.

I hate that medicine but am so thankful that Eli was able to tolerate it for so long. No arrhythmias since we stopped it 8 months ago!

Sorry for the book-just wanted to reassure you!
Take care~; June 16, 2009 at 10:36 AM

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.