Long post, Ups and Downs

Hi everyone, sorry not to post in so long. Well Jackson's surgery went great. He did lose quite a lot of blood, and was very critical after. The doctors said that due to the previous infection that caused his abdominal cavity to swell there were adhesions that made the surgery more difficult. The day before surgery the doctors told us that surgery would take 2 to 3 hours, Jackson's took almost 6 hours, the longest six hours of Adam and my life, but we were updated frequently. The surgeon, Dr Olutoye, said he had about 1/3 of a diaphragm, the rest is now a patch. He also said after removing all the adhesions his lungs opened up nicely and everyone was impressed with the amount of lung tissue he had. Typical of CDH babies he did great right after surgery. By the next morning however he was a little less stable. His oxygen saturations were not where they needed to be. Although he was stable he continued to drop his saturations from time to time, and sometimes his numbers would stay down. This continued through Wednesday and Thursday. On Friday morning while they were suctioning out his ventilator tube they got out a large amount of mucus that had apparently been blocking the tube, after that he was amazing, he was like a different baby. Both his oxygen saturations were 100%. The doctors were so pleased that a couple of hours after this they did a trial off the ecmo machine, he did wonderful and kept all of his numbers great. After the trial off we were told that he had done so well they expected to do another the next morning and he would come off the next afternoon. So Friday went great until about 5pm. Around 5pm Adam and I noticed a little twitching on his right side, his right arm, leg and eye muscle were twitching. At first the doctors and nurses were not that concerted, they said it was probably because his calcium levels were low so they gave him calcium. The twitching continued after the calcium and we asked to speak to the doctor, while we were talking to the doctor he saw the twitching, after he saw the twitching he agreed that it was concerning and ordered a head sonogram and an EEG. The head sonogram showed a normal brain, the EEG however showed seizure activity. They immediately started him on medication to stop the seizures. They said the seizures are not hurting him, the problem with seizures is that people will stop breathing but he is on a ventilator so he will breathe. The concern now is what is causing them. They said sometimes babies that have been on ecmo for a long time will develop seizures and they usually go away a week or so after being off. That's all we know about the seizures at this point. OK back to good news. He had no more seizures after the medication and he will stay on that for a while, and hopefully that will keep us seizure free. He had a wonderful night and all his numbers stayed great, they were actually so good they decreased his ventilator settings. They did the second trial off this morning, and he passed with flying colors. We are not waiting on the surgeons to come take the cannulas out of his neck. So by this afternoon we should be off ecmo!!!!! Well I know that was long post sorry, but a lot happened. We are headed to the hospital now. Thanks for reading, and all your thoughts and prayers.