A Long Night but a good day

Saturday night was very long for Ellie, Abby and I. Ellie had some minor issues popped up that we chased for the evening which made it an all-night affair for Abby and I and we are bleary eyed right now but doing well.

N-G Tube To start off the evening fun and games a bit early, Ellie decided to roll over and start crawling in her crib yesterday afternoon. This usually wouldn’t be a big deal but right now Ellie has 8 tubes and/or wires hanging off of every corner of her body including an epidural line which has stayed amazingly well in her spine since Friday morning. Rolling over and crawling tangled them all up and gave us a bit of a scare. One minute she was asleep and still and the next she was up and moving. To make things more interesting, as Abby and our nurse worked on untangling her tubes and wires, Ellie decided to use the opportunity to give her N-G (Naso-Gastric) tube a good yank. This tube goes up her nose and down her throat into her stomach to drain the fluid that is accumulating there after her surgery and keep her new shiny G-tube. The nurse slid it back in but along the way caused some irritation which led to some scary red blood in her output last night and a call to the surgical resident who looked into the problem. Since then her fluids have gotten clearer and finally today things are mostly clear and we have taken off the suction from her N-G tube.

Fever- Then to make things even more interesting Ellie spiked a moderate fever last night. Not fun and a bit scary since infections are a real issue with surgery and central lines. Fortunately her fever hit a plateau at 38.4 degrees and never hit the 38.5 level where the doctors would take some action to bring it down. The surgical fellow that we have known since Ellie first got to Children’s (and coincidentally assisted in the operation to repair her prolapsed ostomy last winter) told us this morning that a low grade fever is normal for post-op days and not to worry. A hot Ellie will always make me worry.

Startle awake- to complete the trifecta Ellie’s epidural has made her have another round of startle waking where she will wake from a sound sleep as if she is falling which makes her scream as she wakes. To make matters worse she only lasted 20-30 minutes between waking throughout the night and through today as well. We have a very tired girl and tried giving her valium last night to take cares of the waking. It worked but not completely so we hope she sleeps more soundly tonight.

But on the upside......

Loss of the Peripheral IV- When Ellie came out of the OR she had an IV in the foot that was placed to help with surgery. We never used it after the OR so it was removed last night. A move in the right direction that brings us down to 8 tubes and wires. Hopefully it will be followed by paring down more tubes in the next day or so to get us back to our trusty two- a g-tube and a central line.

New Digs- We had a very Cheers-like experience this afternoon when our transfer to 10East went through and Ellie was wheeled across the 10th floor to the area staffed by our good friends that used to be on 8 West. We really felt like Norm walking into a packed bar on a Friday night and felt instantly relaxed after Jody spent some great time with Ellie and the two of us getting us settled.

As I told the nurse on 10 South: these nurses are great (especially Brian who was infinitely patient with us last night) but 10 East is on our Christmas card list!

It's good to be around family that knows our girl. I will go home tonight to take care of Gus and leave Abby and Ellie.

Who knows, Abby might actually go home one of these nights.