All the beeping…..

Good morning! Not that we slept! The TPN pump beeped alarms pretty much all night. It is set for an hour at a time and our 9E nurses rock at getting in early to reset it before it beeps but not so much on this floor. And when it wasn’t beeping to be reset, it was beeping that there was air in the line. The nurse said that is pretty typical of a TPN pump to keep beeping like that but I do not remember that from last time when we were temporarily on it in March.

Yesterday was very confusing. Registration was confused and didn’t want to admit us, said we were just here for an outpatient procedure. Then when we finally got that straightened out it took several conversations on the floor to finally get them to agree to train us. They said our home agency would train us on the central line and TPN when we get home but our home agency said that they should be doing it here. Lots of run around to finally figure out that we will have a whole new nursing agency just to manage the TPN and our current agency will continue to do everything else. It’s just so frustrating to have the doctor tell you before and after the surgery that they will be having training classes with you and then have the nurses tell you no. Laila was right yesterday, I miss our normal floor too ;). And I’m not going home having no idea how to do any of this stuff.

One thing that concerned us yesterday afternoon was she started running a low grade fever and her ostomy output was black with what looked like some blood in it. The resident (yep, resident :( ) kept telling us he thought it was fine. Remember that super fun game of wait and see that happens to us all the time. Yep, that’s what we were doing. They finally cultured it in the middle of the night so we’lol see how that comes back. And the fever finally went away once they actually started fluids. I think she might have been getting dehydrated.

They hung the first bag of TPN last night around 9:30. They have already done labs again and will adjust the ingredients to make a better bag tonight. They want to get a few bags tweaked before sending us home, so we will go home tomorrow night at the earliest. I was told we would go home today if she was doing well but the doctors said no way. It just takes longer to get things set up. Again, questions I asked and tried to prepare for before we came. I hate telling my other kids one thing and then worrying them that we’re not coming home yet. After everything that happen in March and a few days turned into 34…. it can be a little anxiety inducing to have time extended at all.

This morning Laila is in good spirits and giggling with her daddy. She did extremely well waking up from the anesthesia yesterday and besides the time that she had the fever she has been so happy and silly. The central line doesn’t seem to bother her at all. That makes me think we are doing the right thing. I just want her to feel better and hoping this will help! Even if she does look like a robot underneath with all these tubes….