Alexander had a bunch of tests today. During his EKG they notice a difference from his last EKG. He has developed a partial heart block. They will be adding a pace maker tomorrow as well as the Double Switch, closing the VSD and removing the PA Band.
It was unexpected but Dr. Bove was very reassuring. I felt a lot better after speaking with Dr. Bove in person. One thing that was annoying was the constant question of participating in research studies. It was a really long day (8 hrs). We are having Chinese food and heading to bed early. Check in time of 6:15 tomorrow morning!
Alexander
Tuesday, May 18, 2010
Thursday, May 6, 2010
Ann Arbor, Michigan
We will be leaving for C.S. Mott Children's hospital in Ann Arbor, MI, in 10 days. It is hard to believe that it is already time! Alexander's surgery isn't until the 19th, but the pre-op tests take place on the 18th.
I have yet to speak directly with Dr. Bove who will be doing the surgery. I (like most moms) have a million questions. Dr. Rajan, Alexander's Cardiologist, has answered quite a few and speaks very highly of Dr. Bove.
I have yet to speak directly with Dr. Bove who will be doing the surgery. I (like most moms) have a million questions. Dr. Rajan, Alexander's Cardiologist, has answered quite a few and speaks very highly of Dr. Bove.
Sunday, May 2, 2010
Alexander's heart
Alexander was born on February 27, 2009. He was diagnosed with L-Transposition of the Great Arteries( Ventricles are switched), Ventricular Septal Defect (hole in between the ventricles), Ebstein's Anomaly (valve problem), and an over-riding aorta.
Alexander was born on schedule. We didn't have any issues with labor. He was born a healthy 8 lb 9 oz baby boy. They had diagnosed some of his heart defects in utero so a team of people were ready to whisk him away to the NICU as soon as he was born.
He was the biggest kid in the NICU. They didn't have cards big enough for his footprints. The nurses enjoyed seeing a big kid instead of preemies. We got to go home after 4 days and I was overjoyed that he was doing so well!
He was seen by at least one doctor each week after we went home. He has the best Cardiologist and Pediatrician. He had a lot of trouble eating because he would get really tired. He could only eat one ounce at a time, and then sleep for a while. His father and I learned to sleep in the recliner with him because we were up almost every hour feeding him. When he went into congestive heart failure at about one month old, they decided to do a pulmonary artery banding. He did really well. Within the first month after the banding he went from the bottom 10th percentile in height, weight, and head size to the 40th percentile.
During this time it was decided that the best route would be to close the VSD and possibly put in a pacemaker. He was doing really well with the PA Band in place. He was growing, thriving, meeting his milestones.
At the last checkup with Dr. Rajan at Children's Mercy Hospital, he talked to us about the Double Switch Procedure. He was at a conference and talked about this approach with others. He brought back the information to us and gave us this new option. He told us that it was our decision to make;
the conservative approach with just closing the hole and possibly putting in a pacemaker, knowing that the weak ventricle would wear out and he would require a heart transplant,
or the Double Switch Procedure which would hopefully let his heart operate like it was supposed to, but has only been utilized since the 1990s and long term outcomes are unknown.
Alexander was born on schedule. We didn't have any issues with labor. He was born a healthy 8 lb 9 oz baby boy. They had diagnosed some of his heart defects in utero so a team of people were ready to whisk him away to the NICU as soon as he was born.
He was the biggest kid in the NICU. They didn't have cards big enough for his footprints. The nurses enjoyed seeing a big kid instead of preemies. We got to go home after 4 days and I was overjoyed that he was doing so well!
He was seen by at least one doctor each week after we went home. He has the best Cardiologist and Pediatrician. He had a lot of trouble eating because he would get really tired. He could only eat one ounce at a time, and then sleep for a while. His father and I learned to sleep in the recliner with him because we were up almost every hour feeding him. When he went into congestive heart failure at about one month old, they decided to do a pulmonary artery banding. He did really well. Within the first month after the banding he went from the bottom 10th percentile in height, weight, and head size to the 40th percentile.
During this time it was decided that the best route would be to close the VSD and possibly put in a pacemaker. He was doing really well with the PA Band in place. He was growing, thriving, meeting his milestones.
At the last checkup with Dr. Rajan at Children's Mercy Hospital, he talked to us about the Double Switch Procedure. He was at a conference and talked about this approach with others. He brought back the information to us and gave us this new option. He told us that it was our decision to make;
the conservative approach with just closing the hole and possibly putting in a pacemaker, knowing that the weak ventricle would wear out and he would require a heart transplant,
or the Double Switch Procedure which would hopefully let his heart operate like it was supposed to, but has only been utilized since the 1990s and long term outcomes are unknown.
Double Switch
The date for the Double Switch operation is looming: May 19th, which is also his great-grandma's 99th birthday.
From the Mayo Clinic's webpage:
"Double Switch Operation
Today, more patients are being offered a "double switch" operation. At the time the surgeon fixes a defect such as a ventricular septal defect, he or she also reroutes the great arteries so that the ventricles are pumping blood in the direction of a normal heart. This is clearly a much more formidable surgical undertaking, with somewhat greater risk, but if successful, should result in better long-term health of ventricles, especially the over-worked right ventricle.
The best surgical approach to use today in patients with corrected transposition remains controversial, but as surgeons gain greater experience with the "double switch" operation and surgical risk decreases, there is increasing enthusiasm for this approach."
To sum it up: they close the hole, switch the great arteries, and put 'baffles' in his heart to re-route the blood so that it goes to the correct chambers. 9-12 hours
From the Mayo Clinic's webpage:
"Double Switch Operation
Today, more patients are being offered a "double switch" operation. At the time the surgeon fixes a defect such as a ventricular septal defect, he or she also reroutes the great arteries so that the ventricles are pumping blood in the direction of a normal heart. This is clearly a much more formidable surgical undertaking, with somewhat greater risk, but if successful, should result in better long-term health of ventricles, especially the over-worked right ventricle.
The best surgical approach to use today in patients with corrected transposition remains controversial, but as surgeons gain greater experience with the "double switch" operation and surgical risk decreases, there is increasing enthusiasm for this approach."
To sum it up: they close the hole, switch the great arteries, and put 'baffles' in his heart to re-route the blood so that it goes to the correct chambers. 9-12 hours
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