Monday, May 14, 2012

Arrhythmic Back Up

Ever since Saturday night Jaron and I have been trying to keep in touch with everyone to let them know the situation with Michael. I can't believe I'm still forgetting people. I'm trying to keep everyone up to date and unfortunately my phone can't keep up. The battery is going through more work than ever. I'm looking into getting one with a keypad so that I can type on it faster. 

Michael is again, Critically Stable. The poor thing must have been having arrhythmia issues for at least a day before his poor little body couldn't compensate any longer. The doctors are still amazed as to what he is capable of and how fast he's able to recover from something so aggressive. The first time I left Michael at home since we'd arrived here on Tuesday was Saturday night. All I was doing was having a quick dinner. When I got home I'd notified Michaels nurse of what he was doing to confirm he was probably having an issue breathing a few minutes before even if he wasn't now. I then notified the CICU at Children's of the issue and they asked me to call an ambulance so that we could get up there as soon as possible. My heart broke and I fell apart. I'd never had to call 911 before so that they could send an ambulance. I live 6 houses up from a fire house and was talking later on with the paramedics with how lucky we are. I was given an permission to walk Michael over to the fire house if I ever thought they were taking too long to get to my house as long as I called 911 on the way. The paramedics were wonderful and Michaels numbers were showing fairly normal on the ride to Children's. Once we arrived Michael had been so dehydrated that they couldn't get an IV in him. They tried both hands, both arms and his ankle. We finally went up to the CICU and they called some nurses down from the NICU to have them put one in and the only place they could get it was back in his scalp. The alarms that night were going off every few moments but its also the best sleep I'd gotten since getting home. I was unable to feed him again and the nurses were monitoring everything. I fell apart and shut down. I slept. His mitral valve was causing pressure to back up to the left atrium which enlarged and backed up fluid to the lungs which caused him to struggle with breathing which then backed up fluid to his liver which began to enlarge as well. After being put on a lot of diuretics his fluids decreased and his liver and lungs are looking much better. The underlying problem is still his mitral valve. 

Today he is looking pink again and they have him on the medication he was already on plus one more, hoping to get the arrhythmia under control again. In speaking with our Cardiologist we are giving the medications one more shot. We need Michael to be as large/old as possible for this next surgery and the medication is the only thing that's going to get us there. If his arrhythmia breaks through this medication as well then by the end of the week we'll be having to look into the most least risky procedure which is still more risk than we'd like to take. Even if we can get him to gain another few pounds I would be happy. 

I was so excited to be home and working with my own environment and knew I'd end up back at Children's at some point I just didn't expect it this soon. My prayers are stronger than ever and so is the support we're getting from everyone around us. My baby is fighting harder than I've ever had to and he's showing miraculous strength. He was so happy to see me this morning he was giving me great big smiles. The nurses are telling me that they are surprised he is smiling so early and he was actually engaging in sound play this morning while "talking" back and forth with me. He's my little archangel, warming my heart and changing my life. Thank you everyone for keeping us in your prayers.