Bedtime update

We are all feeling the effects of the past few days tonight, sleep would be greatly appreciated tonight Lucy girl!  I will quickly update you on what we know.  Lucy is still running a fever, but not as high as it was last night.  She has been on antibiotics for almost 24 hours and I think that they are helping her because her fever is much lower tonight.  I feel like this remaining fever could be a result of her autonomic dysfunction and not her pneumonia.    She is still NPO but we have done two 50ml bolus’ of Pedialyte and so far so good.  She does not like us touching her tube, who can blame her.  Drew and I were trained on the ins and outs of her new tube this evening.  I have to admit that it is a bit overwhelming , but then again so was the NG when we first  started with that and overtime that became second nature to us.  I must also admit that there have been moments in the last few days that I have questioned our decision to put in the PEG-tube, but when I look at her naked, tube-free, adhesive free, smooth skinned baby cheeks I feel better about the whole thing.

I have been pumping every three hours to keep up my milk supply.  Lucy is not able to breastfeed because they are not sure if she is aspirating when she is nursing.  I have many opinions about this and tonight I will keep them to myself, besides I am too tired to go into a tirade.  We are scheduled for a swallow study on Monday afternoon if we are still here.  There has been no talk of being discharged, but that doesn’t mean I won’t put the idea into the doctors’  heads the moment I think that Lucy looks well enough to go home.

Overall she is doing better than she was last night, but she is no where near back to baseline.  Her bowels are moving oh ever so slowly, which makes her dad and I so happy, strange I know.  I know all of you parents out there are just as obsessed as we are about our children's bowel movements.  I think that conversations about our kids bowel movements are  about as common place between parents as conversations about the weather. 

Lucy has also been slow to move around.  She did sit up for the first time since the surgery tonight, but than she just laid back down on her back.  Her tone is very low but improving.  She has slept a lot and we know that is the only way her body is going to replenish its energy levels. 

Lucy is sleeping and so must I, after I pump again.  Thanks for all the support, we love hearing from you.