Day Two Post-op

All but one pump gone...

We slept in again this morning, and missed a few events.  They removed her subclavian  arterlial line (apparently it was leaking but they were planning to remove it anyway).  They stopped all drugs (note only a single active pump in the picture - just fluids).  They removed her Foley Catheter.  They removed the monitors attached to her head and kidneys (measuring oxygen saturation after tissue absorbtion?).   She also managed to kick out the IV line in her foot, which unfortunately was the last line for them to administer anything by IV.  That last bit was troublesome, as they have a very difficult time getting an IV - she has been poked so many times now that there are very few places left to successfully place one.  It is so difficult, in fact, that none of the nurses were willing to try - the head of the surgical unit (Dr. Van Burgen) was asked in to perform it.  We were here for that, and were asked to step outside. It took close to half an hour for them to finally get it in.  Now they have her foot so taped up that she can't possibly kick it out again.

Hot pads on her hands and feet to prepare for IV

We met with the nutritionist this afternoon as well.  Her feeding schedule - which to us seemed like no big deal since we have been working and refining it for months - is apparently so complicated it raised many eyebrows.  We had to explain several times how we had tried various things to keep her from throwing up her feedings, and eventually settled on a schedule that is part straight breast milk by mouth, part fortified breast milk by gravity fed Ng tube, and part fortified breast milk by continuous pump, which gets us through the nights.  All of that was designed to maximize her caloric intake to get her as big as possible for this surgery.  Now that it is basically over, we were wondering if we could "stand down" and simplify the whole process... perhaps down to just regular feedings of straight breast milk?

Dr. El Zein - one of her amazing surgeons

The answer was basically "it is up to you".  We were given some guidelines - targets - of caloric intake by kilogram of body weight, and have been given the latitude to work within those targets to feed her as we see fit.  I like that level of control over things, as I do feel that we are the ones "in the trenches" and can see first hand what she will tolerate.  Besides I feel much better about anything I can model in a spreadsheet!

Poor Muriel was pretty dazed when we got here today.  Removing the arterial line was fairly traumatic, and she is still getting regular suctions to clear her lungs - also very traumatic and causing her to throw up.  Then there was the half an hour of trying to get a new IV.  She won't look at us and Megan is fairly convinced that she is pissed off!  She is sleeping now and I think will probably sleep most of the day to recover from all that.  I feel so bad for her and I know how uncomfortable she must be.  I keep thinking that the next day will be easier for her, but the truth is there are still some stressful parts to come.  Tomorrow she should have her chest drain tube removed, and I don't think that will tickle.  On the bright side, there really isn't much left to remove...

I know there are dozens of people following progress here.  I'll post more tonight.

Sleeping angel