Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

Has your child been diagnosed with l-tga? I would love to talk with you. Please enjoy my blog and email me if you would like to join a network of parents of children with l-tga and other CHD's.




























Wednesday, April 4, 2018

Post Op Day 1

Lorenzo and I went back to our apartment late last night and purposely did not set our alarms, waking up when we felt rested. Thankfully, our phones never rang, and we slept hard, waking up much later than I had anticipated. We got ready quickly and walked back to the hospital, arriving around 10:30 am. 

Our nurse explained to us that Nicholas had some relatively unstable blood chemistry and some arrhythmias in the beginning of the night before but that now he was pretty stable and his blood chemistry looked to be improving. Apparently his glucose was very high, which required them to give him insulin, and he also had a very high level of lactic acid, which is treated with potassium, calcium, and magnesium, and it had started to improve by the time we got there. 

We missed the morning rounds, but we were told by our nurse that Nicholas would be extubated (breathing tube removed) over night or tomorrow morning. Throughout the day, Nicholas had good numbers, good pulses, and lots of other good signs that he was progressing better than anticipated. They started unparalyzing him shortly after we arrived. It was a beautiful sight when I saw his little toes twitch and his body move. They didn't want him to go from being paralyzed to fully conscious, so they put him on a medication that helps with pain, amnesia, and moderate sedation. After a few hours they could see that he was doing well and took him off of it so that when we were repositioning his body, his eyes shot open and we looked at each other for the first time since we left each other for surgery. Of course, he fell right back to sleep, but it was another encouraging sign that he is doing well. 


One thing that was unsettling today was that even while fully sedated, he went into SVT, which stands for supra-ventricular tachycardia. This means that there is a faulty electrical connection or abnormal areas of electrical activity starting in the upper chamber of the heart and a normal rhythm cannot be sustained. When this happens, the heart rate accelerates too quickly and does not allow enough time for the heart to fill with blood before pumping again. This episode lasted for about 10 minutes and it came on rather quickly. They had been talking about extubation when all of a sudden his monitor started chiming and next thing you know there are 5 doctors and nurses in the room trying to break the arrhythmia. They hooked his pacing wires up to this machine and tried to break the speeding heart rate, but it didn't work. So they tried again, and it didn't work. They were about to intervene with medication, but luckily he came out of it on his own. The medication they would have used would be a beta-blocker, and the MD explained that it would actually decrease the left ventricular function -- which is exactly opposite of what we want to do, now that the double switch is done and Nicholas has a left ventricle that pumps to his entire body. We want it to prove that it can do the job; not give it a free pass to be lazy. So we are praying that the arrhythmias work themselves out as the swelling and fluid output continues to decrease.  



we heart nicholas
About a half hour after the arrhythmia episode, the respiratory therapist came in and started prepping Nicholas to get the breathing tube out. Nicholas had started trying to communicate and of course couldn't. They had weaned him off of the ventilator and he was basically breathing entirely on his own. So they came in and removed the tube. Initially his throat kind of hurt, but he is now able to talk and he feels much better already. 

One of the biggest hurdles after his last surgery was his nausea. They are being extra careful not to do anything too quickly here so that we can avoid him starting a cycle of throwing up and not feeling well, which means no food or water for 4 hours after the breathing tube is removed. He literally just got to eat 2 little ice chips, and much to our relief, they stayed down without any heaves or nausea. After the second chip, he said he wanted to rest. I guess begging for water or ice for 4 hours wore him right out! He has been sleeping soundly for an hour now. 

We ran into Dr. Marx downstairs when we went to grab a bite to eat. He said he is pleased with how things are progressing. He seems cautiously optimistic. As soon as we returned upstairs, Dr. del Nido was making rounds and he also thought Nicholas looked very good. He wants him to rest and we will continue taking things very slowly. 

A funny side note is that all the nurses have commented on his great hair. Even Dr. Marx said something about it downstairs. For just having had a major open heart surgery, his hair DOES look amazing. <3 

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