Monday, Monday

Its amazing how much a tiny little bundle can inspire.  After my conversation with the nurse last night I was almost in tears when I heard that she had a head IV.  Both because of the shaved head (not expecting it made it a bit of a shock after she was so good that morning) but also because of the fact that this poor little one has been poked so many times she's ran out of limbs that they had to use her head.

I was so rattled and had worked myself up by the time I got to the hospital this morning...and there she was, lying so quiet and calm and incredibly beautiful.  She settled me.  She is my rock through this all. 

If she can take everything that they're throwing at her so well, why the heck can't I??  And so I'm now taking my cues from her. 



Here she is, just like I saw her this morning.

As an update on what's new with Payton, she's gained the IV in her head but lost her PICC (which was leaking so thankfully they weren't giving her concentrated TPN - the PICC didn't hold). 

Her other IV's have all failed thus her hands and feet are free of IV's and she just has it in her head.  Which wouldn't be so bad but its on one side and her feeding tubes (with the connectors) are on the other side so holding her was awkward because it was either or pushing against her making her uncomfortable.  As you can see though, we found a position that worked.

Still no feeding and we think she's mostly unsettled because of the fact that she's freakin hungry.  She's used to having some food in her body and now she's only on IV.  I'm not sure if waiting this long is good or detrimental for her...I guess we'll know soon enough.

She had an ECHO today but we don't know the results.  She hasn't been on her Sedinafil (for her puliminary hypertension) since before the surgery and everyone assumes she'll be fine without putting her back on it. 

Tomorrow they'll do another x-ray to track her GJ tube (the one that's supposed to go further into her intestines). They'll  put a dye down it to see where it is and if its in a good place they'll put a wire down to hold it in place and then remove her NJ tube from her nose.

They are hoping to not have to place another PICC line to replace the one that they lost last night but its likely that we'll come tomorrow and she'll have her 4th PICC line.  This one will likely be inserted into her head - the other option was one of her legs but one leg was injured from 2 PICC's ago (the one that was infected) and the other leg is well bruised from her IV that was removed yesterday.  The nurse tonight cautioned that it'll likely be her head BUT she's also said that she's put out instructions that only one nurse is allowed to place any more IV's/PICC's on Payton. He's the best they have she assured me after saying that Payton has had so many placed that she's done being a pin cushion and they need to do what they can to minimize the number of pokes from now on.

While holding her she was wide eyed and bushy tailed.  She was simply a joy to hold today even though its awkward to hold such a 'hooked' up little girl.