Day started off amazing. Found out they discontinued the Ecmo machine at midnight and currently had an ammonia levels of 29. We rushed to the hospital this morning just in time to give our little girl a kiss before she had surgery to have the cannula removed. They were able to reposition her onto her right side. Bet shes happy to not be staring at that left wall anymore. The room looks completely different. No dialysis, no Ecmo, no plastic tubes everywhere carrying her blood, one less nurse, and most important is that we are that much closer to holding her. They moved some chairs in now so we can just sit and hold her hand. Can’t explain how nice it is to not just stand and stare at her. Surgery did have a few problems. Her blood pressure bottomed out and they had to jack up the dopamine and dobutooo??? something. Around 1 we got an ammonia level of around 54 which we are told is still okay and that its part due to the fact that the food levels have been increased and still trying to get the food/meds formula right. We knew that this was gonna be a process. Had some great friends distract us by taking us to lunch which was so so so appreciated. Got back from lunch to have a meeting with the geneticist who informed us a little more about what future plans would be. Liver transplant is still the best option. Good thing is that Brandy and I are candidates for a living liver donor. Right after the meeting with him her blood pressure bottoms out and oxygen intake drops way low. She has since done this 3 other times. We are a little worried that this could be due to the ammonia level from the first day. They are doing an EEG over the night to check this. This could also be due to a doctor placing the breathing tube in to deep. We are hoping its the second.
All and all we feel like this has been an amazing day. Lots of big wins. As we left for dinner the room next to us was getting a very sick kid. Tonight id like to pray for that baby’s family and hope that he can calm their hearts like he did ours during their storm.
Here are pictures from last night to this morning.
Had to add this photo of her during here EEG.