Coarctation (narrowing) of the Aorta - Surgical Repair
9/23/98 - 6 1/2 Months Old
Surgery to repair Ben's narrowed aorta went very well. It was about three hours from the time they took him into surgery, until we were able to see him again. The incision for this surgery begins under his left arm and goes around to his back. The aorta is more easily accessible from there than from the front of the chest.
Ben was extubated Thursday morning, just one day after surgery. He struggled the rest of the day, tossing and turning, trying to get comfortable. His sats dropped into the 40%-60% range, which was very scary to me. When he was in heart failure in June, his sats had only dropped to 62%. Finally, around 4pm, Ben settled down, and his sats climbed back into the mid-80's.
On Saturday, we were just minutes (literally) from moving out of PICU and up to the floor, when Ben's blood pressure became too high. They decided to put him back on nypride to bring it down, so we needed to stay in PICU to be monitored.
Saturday night, I became more concerned about Ben's left eye. It appeared to droop, and did not open as far as his right. Also, his pupils were not the same size. Our nurse phoned Dr. Cabalka, who said it was not a stroke, which I had feared, but something called Horner's Syndrome.
Just one day after bringing Ben home, our son, Connor, fell and broke his arm. He had to have surgery to set it, and is shown here the following morning at home. Sending two kids into surgery in less than a week was nearly more than I could handle!!
10/5/98 - Almost 7 months old!
Ben continues to have abdominal problems. We've seen the doctors twice, but still do not think we have it resolved. He cries and cries when he eats. We have switched his formula to see if it might be lactose intolerant, but this does not seem to help. We will continue to work with the doctors to find out what is wrong.
On a good note, Ben's eye seems to be better. It only droops now when he is tired. Also, Ben's voice is coming back. We had feared he may have had a paralyzed vocal cord as a result of the surgery, but it seems to be improving.
11/11/98 - 8 months old!
Ben is doing absolutely marvelous!! His crying has stopped, his voice is back and just by looking at him, you'd never know he had a heart problem.
We did have him evaluated by our Early Intervention program through the school district, and as we had expected, he's a little behind in gross motor development. He's only rolling over a few times a week and is nowhere near sitting. He will begin receiving physical therapy this week and should catch up quickly. Cognitively, he's pretty close to where he should be for his age.
Ben had his six month shots (at 7 1/2 months) and did well with them. He weighs 14lbs. 8oz. (-5%) and is 27" (+25%) long. Our cardiology appointment also went well, and Ben does not have to go back for THREE WHOLE MONTHS!! We will surely enjoy this holiday season and give great thanks to the Lord for all He has given us.
Also, this last hospital stay and the month after were a whirlwind, and we never really got to thank all of the wonderful people at Minneapolis Children's Hospital who helped us through this...again. To Dr. Singh, Dr. Helseth, Dr. Overman, Dr. Cabalka, Dr. Wilkin, Kathy W., Jed, Wendy, Peggy and all the other wonderful staff, we thank you! We can never fully express our gratitude for all you have done for Benjamin and our family. You are the greatest!!
01/03/99 - 10 months old!
What a whirlwind this past month has been. Benjamin has had two "episodes" in which he goes from perfectly fine to unresponsive, eyes closed, rapid, shallow breathing and color change in a matter of minutes. This happened on November 30th and then again on December 26th.
The first time, Ben was sound asleep and woke up coughing. Within a few minutes, he became unresponsive. He went into a fetal position and would not respond to any stimuli. He turned a blue/gray color, but when the paramedics measured his sats, they were at 85%, normal for Ben.
During the ambulance ride to the hospital, Ben became more alert and responsive. By the time we arrived at the hospital, Ben was nearly back to normal. After two days in the hospital, and many tests, including an EEG, CT scan, and an echo of his heart, no firm cause was found. Seizures and talk of a coronary artery problem were discussed, but nothing definite. We were given oxygen to have at home in case it happened again.
Well, the holidays were wonderful, and we just enjoyed every second of them with our children. Ben was doing well, and really loved playing with the paper from the gifts. On December 26th, however, I went to change Ben, and he began to throw up. Within 30 seconds, he began to close his eyes and have difficulty breathing. He became unresponsive and turned blue, just as he had before. I gave him the oxygen immediately and called 9-1-1 again. This time it took Ben much longer to come around. It was nearly 1 1/2 hours from the start of the episode until Ben was actually grabbing at the tubes and kicking his feet again.
We again stayed in the hospital for two days. The entire time, Ben looked as normal and healthy as could be. His sats stayed in the mid-80's and his heart function appeared good. No one really thinks this is a problem with Ben's heart. Several doctors think it may be seizure related, however, we saw the neurologist for the second time, and he said he does not think these are "unprovoked" seizures. We now have Ben on an anti-seizure medication called tegretol.
To top it all, the day after we were discharged, I took Ben in to see his pediatrician. Ben had had a large lump from his six month immunizations back in October, and now it appeared to be infected. It was. The pediatrician said he had only seen one other case like it in 25 years of practice. We rushed back over to Children's ER and had a pediatric surgeon lance it and clean it out. Thankfully, the infection was contained to Ben's leg and had not spread into his blood stream.
For now, we are taking a breath and praying for a healthier New Year!! Ben appears healthy and looks great! He is now rolling and sitting without any problems, and is holding his weight on all fours. He's not crawling yet, but we are in no hurry for that!!