Care4Conway: 3/8/09

Saturday, March 14, 2009

Our little Irishman

Just in time for St. Patrick's Day. . .

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Connie has become quite the little adventurer when left to his own devices. Greg went out to get the mail the other day and when he tried to come back in the house, Connie had locked all the doors! He also has learned how to feed Belle and feeds her no less than 5 times a day. That's okay, though, because he only gives her a morsel or two each time.

In other news, Grandpa is recovering well other than the delusional state that the pain meds put him in. His incision goes from his shoulderblades to his tailbone! All the therapists say he's advanced! Hopefully he'll be coming home by early next week.

Wednesday, March 11, 2009

Connie and Grandpa Update

Grandpa is in quite a bit of pain but they are keeping him pretty heavily dosed with pain meds. He is still in ICU and expected to be until tomorrow. Crazy that he's in the same unit as the shooter from the Illinois church!

Connie woke up as soon as I finished posting last night's post. Murphy's law, I guess. I gave up and had Greg take over at midnight. Greg said he woke up about 2 times overnight but went back to sleep quickly. Today he took a three hour nap! and is almost himself. He still sounds sick but we're crossing our fingers that he sleeps better tonight.

Tuesday, March 10, 2009

Grandpa is Out of Surgery and Connie just fell asleep

My dad's surgeon came out after 12 actual hours of operating and said that he was pleased with the outcome. Dad will be completely out of it tonight and since there are no ICU beds and that's where he would go after such a procedure, he's staying in recovery all night long and he's the only patient and has four nurses! How's that for patient:staff ratio? He said he stayed stable the entire length of the operation and could not be doing better. Praise God. Please continue to pray that as he awakens that his pain is able to be controlled and his recovery is smooth.

As for Conway, he did pretty fine this afternoon but this evening just couldn't settle. His breathing was more labored. Not sure if he couldn't sleep because of the steroid treatments or what, but he just didn't want to be in bed and we can't exactly let him cry and get worked up b/c he is unable to breathe when he gets like that. He finally fell asleep about 5 minutes ago (10:07pm) which is quite late for him. We're crossing our fingers that he sleeps peacefully all night and we don't end up having to take him in.

Croup

Connie woke up at 4:15 am today struggling to breathe. He had a horrible, barky cough so I quickly gave him an abuterol treatment. It seemed to make no difference whatsoever. He did calm down a bit to drink some milk and then about two hours later went back to sleep. When he woke up at 8:30 he got another treatment and sounded just as bad so I called the doctor and they said to bring him in since he was pulling a little around the ribs and laboring. I have never heard him sound so rough.

I took him in and Dr. Davis thinks it is croup and a sinusitus. He gave him an oral steroid, dexamethasone, in the office and wrote a script for Azythromycin for the sinus drainage. He said that if the treatments don't work within 20 minutes of giving it, to take him to the ER.

My dad is having a 10 hour back surgery today at SLU hospital so we'd appreciate all the prayers you could send on his behalf.

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.