Third morning post-op

Room is starting to clear out!

Sorry for missing a post last night - was an extremely busy day (mainly for us; not Muriel).  Our friends Neil, Stacie, and their two girls Madeline (we call Big Madeline) and Alexa came to visit in the early afternoon, followed close behind by Megan's mother, sister, and our two older girls.  They stayed through dinner at the Ronald McDonald house.  Poor Madeline (Little Madeline) begged to go see her little sister and promised "I won't touch her or anything at all!".  We had to explain that it was the hospital's rules and that she would get to see her soon.  She was very upset.

Muriel, on the other hand, slept all day.  Just like the previous day she would wake up for brief moments and eat or drink, then fall asleep again.  She was VERY puffy all day yesterday and her eyes were so swollen she didn't (maybe couldn't) open them.

While sleeping she made some progress.  The nitric oxide machine is now gone, though she is still getting oxygen from the wall.  After her dip in saturation yesterday it had been upped to 3Lpm, but sometime during the day that was again reduced to 2Lpm and her saturation has been steady at 98 - 100%.  We got an explanation for the lower saturation from Dr. Penk, and that we might expect it to be slightly less than 100% normally going forward.  During Muriel's catheter lab a few weeks ago the surgeon mentioned that there were two "popoffs" - basically new blood vessels that grew in response to the unnatural pressures from her previous surgeries, effectively bypassing the bypasses we are putting in place (hope I am making a fair analogy there).  He managed to clamp off one of them with a small "coil", which you can actually see in her x-rays.  The other he said he tried but could not get to, and that the surgeons during her Fontan would possibly get it during that surgery.  I complete forgot about the issue in all the chaos of the past few days, but it seems that they did not see it either, and it still exists.  The bottom line is that some blue unoxygenated blood, via this remaining "popoff", is still getting mixed in with the oxygen rich red blood from the lungs before going off to the body.  That small amount of blue blood will be pulling down her measured saturation rate until it can be closed, if they decide it is necessary.  If so another catheter lab will happen at some point and they will get it then.

Other progress points - the IV in her hand has been removed, so she now has two free hands.  The cranial and renal oxygen saturation monitors have been removed.  Her Foley catheter has been removed (just the thought of that one makes *me* uncomfortable - I am sure she is happy for that to be gone).  The right-side pumps have been removed after all being shutoff.

She is still on quite a few meds, and during rounds this morning I think I understood that they are still "tuning" her chemistry.  Potassium levels were high, then they started diuretics yesterday and they fell low, countered with this and that, etc.  There was much talk of her liver - the enzyme levels were high for several days and last night an order was put in to do an ultrasound.  During the night blood labs were performed and found that the levels were coming back down, and during rounds it was decided to cancel the test.  Lots of talk about her puffiness, and a decision was made to start a pump of Lasix instead of regular manual doses, and to start another diuretic "Diuril".  They would like to completely dry her out over the next few days.

Last topic in rounds was her lack of a BM... she hasn't pooped since Wednesday evening!  A suppository has been ordered and should be administered soon.

When we arrived this morning Muriel was much more alert.  She opened her eyes and even signed to "go out".  Clearly she is done with being in bed.  Still very tired though.  We tried to feed her oatmeal and applesauce (with a bit of aspirin mixed in) and unfortunately she threw it all up.  A few ounces of Pedialyte and she was out again.  Its nice to see fewer and fewer tubes and cables connected, but she is still fairly well tied down.  Not possible yet to pick her up, and she really wants us to.  Perhaps in a day or two when the drain tubes come out.

Megan and I got good sleep last night - left here before midnight and didn't get up until 7AM.  We very nearly missed the rounds this morning.  I actually walked in as they started talking about Muriel.  Its good that we have caught up a bit on rest, because I am sure she will be very alert soon and will need us to be there.

Sleeping angel last night, with dolly