Eli was throwing up yesterday and his breathing became very labored. We decided to bring him back to the ER because of the brown in the vomit; we were afraid it was blood. He ended up being in respiratory distress and unable to get rid of the CO2 in his body. They wanted to put him on a ventilator to fix this, but we had already decided that we did not want to go that route. That decision was taken away from us though because he has no definite diagnosis as of yet. We were forced to either agree or they would have the state take over custody; either way, he was getting hooked up to that machine last night. It was a horrible experience....HORRIBLE.
We are now in the pICU and Eli is being sedated while hooked up to so many tubes. This was not our wishes, but because we brought him to the hospital, things are out of our hands for now. We will be pushing hard for them to do one of the other tests to confirm the SMA; we do not want him to be kept alive for no other reason that to be a pin cushion. I still can't believe we are in this situation. I feel like my life has fallen apart completely. I have no idea what to even do at this point. I lost my baby last night, but the doctors insist on keeping his body alive. I feel like a failure; we promised him we would not prolong things by hooking him up to machines. In trying to help him, we were forced to break this promise. We are not even allowed to file a DNR for him; NOTHING! We just have to sit on our hands and let them be in charge.
I will never, NEVER, enter a hospital again as long as I live.. We have had the worst experiences in the past 2 weeks, constantly being forced to fight doctors for what should be humane treatment. It has not be an acceptable experience. It hurts to think you are trying to help your child, yet those you trust to do that go against your wishes and do things you do not deem as helping. I know it will be a fight to get him fed again, but it will not be the 50 hours it was last time.
I'll try to update when I can.