I'm sorry that it has taken me all day to post an update, its not because today was terrible or hard in fact today was completely different and so much better. The doctors feel that they found the source of Gracie's problems or at least the one that seems to be causing the major problems right now.
Gracie is still has a long way to go, but is definatley better off today then she was the last two days!!!
The blood cultures that were drawn on Sunday night finally grew something, turns out that it is a staph infection. Luckily they started her on an all encompassing antibiotic on Monday, but it is this antibiotic that caused yesterday's horror. The doctors believe that after two doses of the antibiotic it built up enough in her system to start working. Apparently her body just couldn't handle it causing her blood pressure to drop, even today it was still happening. We can't stop the antibiotic because it is the only way to fight the infection, so they give her some Norepi which raises blood pressure with every dose she receives and it seems to be helping her.
Today they also took Gracie off of her paralytic, but she is allowed to have boluses if needed. So far she has only needed one bolus since it has been turned off. Sometimes she just gets so mad and even her major IV pain drugs don't sedate her or calm her down enough.
Since her blood gases are looking good they have been weaning her oxygen levels on the vent, she is now down to 50% which is the lowest they will go until the nitric gas is off. It was my understanding that they weren't going to touch the nitric until tomorrow, but after calling this evening I was told they weaned the nitric from 20 down to 15. This is slower than the normal nitric wean, and I am told that it really doesn't make a difference until she is down to 5...but with Grace moving too fast, even if it is the "normal" slow it is too fast and eventually she fights back and ends up taking several steps back. I feel that today she has made strong strides and that she needs to just rest tonight, so I'm allowing them to wean the nitric down to 15, but that is the only thing they are to do tonight. Grace's night nurse promised me that if Gracie can't tolerate the wean she will go back up. The nurse also agreed to call me if they were wanting to wean the nitric more, because then I will talk to the Attending myself to help him see how slow she really needs to go and that I don't feel comfortable weaning any more.
I just feel that those that aren't familiar with Grace really understand how slow they really need to go, she has been on all of these drugs and gases so many times that she just doesn't like to give them up easily--its almost like you have to go slow enough so she doesn't even realize that you are changing anything.
Anyways now I am rambling...its the exhaustion...Thank you for your prayers, I know that they moved mountains for my Gracie and are allowing us the miracle to still have her with us. May you all be blessed and experience blessings and miracles for your selfless interest and love for my sweet, sweet baby.