Care4Conway: Flu Update and More

Saturday, October 24, 2009

Flu Update and More

Thankfully, everyone in the house was able to remain flu- and strep-free thanks to Tamiflu, constant sanitizing and keeping MK restricted to her room for five straight days.

Now for the badish news. Conway's activity level has decreased a bit, he's not eating as much, his sleep is not as restful and his little neck vein was pulsating yesterday. Then last night he vomited out of the blue. We did a pacer check yesterday which looked fine, but we've been fooled by those before so Dr. Bromberg offered to meet us at the office this morning to check him himself and help us be reassured that he was not in atrial flutter. Good news is he is not. Bad news is that his liver is bigger and with the other changes, it indicates that he's not handling the changes we made at the last visit.

Due to this, we will go back to the Lasix twice a day. Part of me feels so defeated that we are moving backward in the recovery process, but then the other part of me is so relieved that this is not flutter and we don't have to reintroduce that nasty Amiodarone. It's amazing how quickly you can be thrust back into the reality of CHD. Dr. Bromberg said that we might have been a little ahead of ourselves because he really looked so good last time he saw him and he does think he's not as good now. Hopefully this is the change he needs to get back on the speedy recovery track. This isn't a life sentence to 2X/day lasix, we can still wean him down eventually. We'll just take it a little slower from here on out. He said to call him in a week to let him know if he's improved and if not, then he'll adjust his pacer settings to see if that helps.

Prayers are appreciated as always. Focus them on God using the increased diuretic to help Connie's heart failure symptoms improve so that he can bounce right back to the path he was on.

5 comments:

Unknown said...: Erin,

Praying as requested! I hate the CHD bounce...

I'm thankful to be in 'A-Okay' mode right now, but never for a moment am I fooled into believing we'll be here forever. Sad, but true. Hope, I'm always hoping!

Lisa in TN
Eli's mom; October 24, 2009 at 10:43 AM
H. James said...: I'm so glad it wasn't flutter and hopefully the "simple" fix of going back to 2x/day Lasix will do the trick. I know how defeating it is to feel like you are going backwards, but these kids are more of the slow & steady kind, as you know. I hope he feels better really soon with the increased Lasix and that you all stay well & fever-free!! Great job avoiding Connie & yourself getting the flu. That seems like an impossible feat to me. I'm hoping I won't have to match it someday.; October 24, 2009 at 10:51 AM
Anonymous said...: Great news about avoiding the flu. I know you are a bit discouraged about the Lasix, but I think the doctor is probably right about maybe taking things faster than was helpful. I truly believe our prayers are there and helping at every moment. Don't let discouragement drag you down. God's plans are only for good. With love and prayers, Sr Josephine; October 24, 2009 at 4:13 PM
Aaron and Erica said...: I'm so sorry that Connie is not doing well right now. You guys are in our prayers.

Our daughter is 3 and has not had the Doub1e Switch but she had her VSD closed in March of this year (we adopted her in January).She was just taken of Lasix last week and I have been watching to see if I see any changes in her yet. So far so good, but your post is a reminder to me to be thankful for each and every day that she is symptom free.

Thank you for sharing your journey with us.

Erica; October 24, 2009 at 7:41 PM
Donna Beckemeier said...: As usual you are all in my daily prayers. I hope Mookie and Greg are doing better now, and I have stepped up my prayers for you and Connie. As mothers, we do what we have to do. Whatever that means on any given day. With everything that's on your plate there is no wonder you have some down times. But you always bounce back. I am inspired by you. Connie is such a lucky little boy to have you guys. God DOES answer prayer. All you need to do is keep the faith and believe. And again you inspire me.
Lots of love and prayers for everyone, from Greenville, SC.
Love, Donna; October 26, 2009 at 9:51 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.