Which is a very good thing.
C is not in the hospital now for any reason other than waiting for GI to come and place the feeding tube. Supposedly they are going to place the feeding tube on Wednesday. Of course there is always a chance that will not happen and they do not get around to placing the tube until Thursday or Friday. We were really pushing for Tuesday but they said they just could not get her on the schedule for Tuesday. Don't know why, but that is what GI said.
So, we try to be as normal as we can while living in a hospital which does not allow for any kind of normal living. C is out of her normal environment and off her normal routine. She cannot leave the hospital and only very recently has been allowed to actually leave her room. Getting out does help everyone's sanity. Unfortunately with C being in a cardiac ICU we just cannot have the parade of visitors that we would so welcome to help break up the tedium. Back here in the ICU they get a little particular about allowing in germs and such...gee, I wonder why? Anyway. Living in a hospital is really horrible. Especially when we are living here only because we have to wait on getting a relatively minor and easy procedure done. I guess this is the penance we must pay for being so stubborn in the first place about C getting a feeding tube. If we had moved forward with this 5 months ago, shoot, we would be home sleeping in our own beds tonight. Instead, I have been listening to C whine and cry for the last hour because she does not want to be put down in the hospital crib, she is all hopped up on the 15 different drugs she is getting every hour or so because they all have different times they must be given, she hates the nurses messing with her (and for some unknown reason the doctors still want vitals checked every 4 hours...they already know her blood pressure refuses to drop much below 90 and hovers around 100...continuously, for the past 48 hours, on the same drug schedule...grrrrrrrr), she has been annoyed the last hour because the stupid blood pressure cuff does not work and the nurse keeps trying to take it, and of course just when she stopped screaming and actually went to sleep (2 hours past her normal bed time) the nurse comes in to move the stupid cuff because it is not working and wakes her up and she starts crying all over again...and for some completely unfathomable reason the cleaning people must empty the trash in the babies/kids rooms at 10:30 at night. Seriously. Hey people, the last time I checked my daughter is no longer all drugged up on fententyl and versed and living in sleepy land 24 hours a day. We are trying to be as normal as possible, per the doctors, but you are all making.it.impossible.
Can you tell I am a tad frustrated. And this is my first full night here. Stupid hospital.
I have no problem with most of the above (with the exception of why it is absolutely critical to get the trash in the middle of the night, disrupting sleeping babies/kids), the doctors and nurses are just doing their job after all, however, it makes it very hard to tolerate when we are only here because some other doctor just can't quite get us in the schedule.
So here we sit. And wait. For something that everyone tells us is so darned important yet apparently not important enough to do, you know like today. All the other doctors were here today. Apparently the GI's had better things to do. Can you tell I am really not liking the GI's right now. And just so you all know, this is the same group that we have been seeing, the same group who supposedly understands how critical it is that C get her feeding tube.
Breathe in.....breathe out....
Sunshine and rainbows....
Kevin is back at home with the boys. I am sure they were ecstatic to see him and be back in our home. Got to talk to them briefly tonight on skype. C got to see them and blow kisses. She so loves them.
We are hoping that we can be discharged Friday. That would be the earliest if all goes to plan and goes well. Here's to hoping.