Yesterday we were steps away from going home. I could smell it. I could hear our crazy neighbors outside in the street, their base bumping cars, honking for their boo to come out. We were so close. She was at .3 in the morning. They brought her down to .15 at noon- if she can hold it together at 12 am they will bring her down to .15 to be given every 6 hrs instead of every 4... which is a wean. I was nervous on how that was going to go. I started seeing signs in the morning that things were changing.
The day nurse slipped that the team of doctors said if all went well last night, we'd be going home on Saturday. I tried not to get my hopes up- I almost didn't tell C, I didn't want him to be disappointed either- we took it with a grain of salt but a girl can hope. I silently planned the next 72 hrs and waited.
Around 3 pm things started getting funky- she started changing a bit. By 8 pm it was clearly not getting any better. The nurse and I tried just about everything. By 12 am they had to increase her dose back up to .2, then another .2 for a total of .4. Before they could get her there- they had to give her more to calm her down and bring her to "baseline" so she could settle down. She cried for hours, I didn't know I could hurt so much. She couldn't calm down- they had all kinds of nurses coming in, all kinds of things to try. There was swaddling, warm blankets, they even got out the unit stroller and was going to take her for a ride- but she had gone too far down that withdraw path for that. It was awful, disappointing and heart breaking.
This morning, after a long nights sleep- she is doing better. Radically better. They brought her back to .3 for today and our plan moves forward this time at 12 hr intervals they will bring her down very very slowly instead of aggressive as that is not working at this point for this last little bit.
They assure me that "soon" this will be over, and even though I can't see it now, she is doing great. They also asked if I waned a change of scenery there is another unit we can be transferred too- a "step down" where people are transitional to go home, but there is no private nook as there is here- and while I hate this place, I hate this unit- it's not them, it's the whole thing. It's this hospital. So maybe I'll behave a bit better, as I don't want them transferring me if they don't have to.* If we do move, apparently this step down unit is a large pit of babes and parents trying to get out of dodge.
Last night I was shaken, I didn't know how to help her- and I don't think I could have. Today I was even gun shy to go to her bedside in the morning as I didn't want to disturb her. The team of doctors came in to talk to me today, once again to make sure I understood what they are doing and why. I think they wanted to make sure I'm on board, because I'm sure somewhere in last nights' notes there is a description of the scene. When the doctor and nurses came in to increase her dosage to .4 I held on to her as if they were coming to cut arm off. It felt like we were going backwards, when really we needed to just press pause.
Today was a better day, and tomorrow we will continue the journey of taking it one day at a time. It's hard to believe that this will ever work, but they assure me it will, it will just take time and we are so close.