Doing Well

We've been back in the hospital for ten weeks now. Our little one turned three months old on the 25th. It's hard to believe we've been driving an hour and a half to and from the hospital every day for almost three months. When I think about it, I'm sad our little girl has spent 1/4 of her first year here in the hospital. But I think we are seeing a light at the end of the tunnel, they've been talking about sending us home a lot lately. One person told us we could be out as early as Friday. I am so hoping this is the case.

She's been doing so well that we may not have to wait on home nursing because she doesn't need it. We haven't been using wall suction since Wednesday and so far she hasn't needed it since then. They first told me she wouldn't go home with anything... I wasn't going home without a monitor for her oxygen level at night, so I bothered them until they agreed to it. Apparently you can get your way if you tell them you feel unsafe going home. Which I did feel unsafe. Once you see your child choke and turn blue for no apparent reason, that's enough to make you panic for the rest of your life. And since it was such a sudden onset there's no way they were sending me home without a monitor, or I'd have to become one of those super insomniacs that don't even miss sleeping because I'd have to watch her every minute of every day. We really want to come home but I think both of us are trying not to get our hopes up because every time we do, we get a setback.

In more good news, the ENT doctor came by and did another scope of her throat. He said she has obvious improvement in sensation and swallowing skills. She still has some numb spots but the muscles that help her to not choke are functioning and close when he touches them with the scope. Of course only time will tell exactly how far her recovery will go, but based on these results, she gets to try her first bottle on Monday. She hasn't had a bottle since February 26th... If it goes well, we will get to feed her anything she wants by mouth and put the rest through her g-tube.

The g-tube and I still have a love-hate relationship. It's helping her to come home, and definitely helping her gain the weight she needs (we're up to 10.5 pounds now!). But it's huge, and bulky, and yes it's still ugly. Our six week check up cannot come soon enough so hopefully we can switch to a button instead of the giant tube that just hangs there. I've been working on learning how to take care of it and it doesn't seem that hard. I've done the dressing changes the past couple of days on my own. I guess the only thing left to really learn about it is what do to if it comes out.

I go back to work tomorrow. Part of me is sad, because I will no longer get to spend all day with Callista and I'm going to miss OT and PT and for the most part the doctors every day. I'll have to get second hand information which isn't really the best route. Plus, I'll still be driving back and forth, I'll just be working before hand. I'm going to try VERY hard not to be a cranky person because of this (and hey, hopefully she will be coming home!). At least they did agree to let me come back part time. Once she is home and settled in I'll be going back full time, but this gives me some much needed time to be able to travel to the hospital and back and still keep half of my sanity. Part of me is glad to be going back to work. I'm tired of going without. I know that makes me sound like a spoiled brat, but that's not what I mean by it at all. I guess I'm just tired of having to plan out everything to the dollar so I can be sure we can pay our bills. I'm tired of not being able to go have drinks with the girls or whatever because I can't justify spending $6 on a drink. I also want to get back to doing my own job. I appreciate everyone trying to pitch in and keep it semi caught up, but wow I'll be glad to be back in control of my areas. I'm nervous about what kind of state it'll be in though lol. And I am nervous about going back because people will ask me questions... If I don't think about it, I can get through my days quite nicely, but talking about it is different. I'd like to pretend it's not there, but I guess I can't wear a sign around my neck that says "Please don't make me talk about it".

So here we go, trying to get back to a somewhat normal life. I tell myself this IS our normal now, and someday I think it will feel that way. We will fake it until we make it :)