Again I wasn't sure where to begin in this week's post. This was the most difficult week we have had.
Before I get into the details...Andrew is fine now which I'm so grateful for.
Our very big scare:
Andrew and I had a great weekend. Andrew was doing fantastic. So fantastic they were going to take the breathing tube out on that following Monday (8/15). On Sunday (8/14) during the afternoon he started to desat (this means he isn't able to get oxygen to his blood). It was slow at first. He would desat and they would bump up his support and oxygen. He kept desating. Finally we were at 100% Oxygen and full breathing support...he was still desating. No matter what they were doing he was still desating. Desating is very bad for various reasons. It can cause brain damage, it can make their heart stop....so you get the picture it is very bad. At one point while this was happening I asked the doctor if he was going to make it and she didn't know. She said to call the red cross (if your spouse is in the military and needs to get home for an emergency the red cross will help facilitate that through Mike's commanders) and get my husband back here. You can imagine how terrified I was. I thought I was breaking apart before well Sunday night was a million times worse. Luckily I have family that lives a half hour away. I called them to come sit with me that night. I couldn't have been alone. My mom and husband were able to be here the next day too. My husband gets to stay until Sunday so it has been so good having his support. Thankfully Monday afternoon they were able to get Andrew to stable condition.
So fast forward to now. Andrew got a cat scan yesterday to see why this stuff keeps happening. We got the results this morning. He has severe Tracheomalacia. Which means his muscles around his Trach are floppy. So he will do well for awhile but then the muscles get tired and literally flop over. When they flop over he can't get air into his lungs. It explains why he kept having these crashes. It felt like a 5000lbs weight has been lifted off of me. Just knowing what is wrong makes a huge difference. I was constantly living in fear waiting for the next crash. Now they know what is causing it and will put a plan together to fix it. A yucky part of the diagnosis is we will be here for a long time. Next week is Andrew's actual due date (Aug 29th). I thought we would be in such a different place right now and getting ready to go home. The doc told us this diagnosis will keep us here another 4 or 5 months. They are going to keep him intibated for another month and then are going to do another cat scan. If the cat scan shows he still has it and it is severe they are going to put a trach in his throat. I think if I would have been told this a week ago I would be a wreck. After Sunday, thinking I was about to lose my son this doesn't phase me. My boy is strong! Spina bifida and tracheomalacia better watch out because I know Andrew will be alright.
So our journey in the NICU is a little longer then I anticipated. Hmmm maybe Andrew is an undercover Philly Eagles fan and doesn't want us to leave!
I'm dying to post pictures so I will try to get on a normal computer instead of my ipad next time and get some up.