Fourth morning post-op

Ice cream makes everyone feel better

This will go down as "the day she woke up".  She was technically awake most of yesterday, but really unresponsive.  Megan struggled for a word to describe her state and eventually settled on "lethargic".  Her eyes were open, and she could look around and see you, but wouldn't lift her arms or move really at all.  By later that evening I had decided that a better word might be "depressed".  She seemed to have given up complaining and just turned off.  She didn't eat much yesterday - just a baby food pouch and a packet of Saltines.  There was the vomiting episode in the morning yesterday, but after getting a few doses of Zofran she didn't have any more of that kind of trouble.

The lap diaper change

We had another set of visitors yesterday.  Megan's friend Lauren came in the mid morning followed by Aunt Cookie (Gayle) and cousin Jessica in the afternoon.  They stayed through dinner at Ronald McDonald house.  Both nice visits - I hope they will forgive Muriel's ambivalence!

Our biggest concern yesterday was to get her swelling down.  Dr. Penk introduced a new drug - Albumin - usually given to trauma patients to increase their blood volume.  My understanding is that it works by leaching fluid from the tissues and keeping it from seeping back through the vascular walls (it is apparently a very large protein and won't "fit" through the same holes that it draws the fluid in from).  It did seem to reduce the swelling a bit.

Second biggest concern was her urine output.  One of the signs of cardiac output trouble is lack of urine, as the kidneys need a large amount of blood flow to do their job.  Other indicators of cardiac output trouble (blood pressure being one) did not show any issues, so this was a mystery.  The nurses brought in a "bladder scanner" which gives a fairly instant indication of the volume of urine in the bladder, by ultrasound.  Megan posted a picture of this yesterday.  The result of the test was that her bladder was actually full, and her problem was getting it out.  I'm unclear on what caused her to hang on to this fluid, but within a few hours of the Albumin she had peed that measured volume, so the issue went away.  She has had reasonable diapers since, including a giant one around midnight.

Almost back to happy girl

At the late night rounds I heard that her Sodium levels were very low.  This is somewhat to be expected based on one of the diuretic drugs she is on, which is known to pull sodium from the body.  She is getting sodium supplements to compensate, but we haven't been able to get her to eat and drink as she should, so she missed some.  Hoping this will get better today.

Finally there is concern with her Potassium levels, which have been both high and low as they tune her chemistry.  I believe they stabilized over the weekend and I saw her get a dose of a new weak diuretic (Aldactone) that is meant to hold on to her Potassium.  Last minute update - her lab just got back and Potassium was again very low.  She is now to get a Potassium and also a Calcium dose by IV.

It has been truly difficult to keep all of these things in my mind this time around.  I don't know if there is more going on or if I was just blissfully ignorant for not being able to attend the doctor's round discussions.  She is certainly having a harder time with this recovery.

Back to the idea that she finally "woke up" this morning.  When we arrived she was sleeping and we attended morning rounds.  Once we came into the room she opened her eyes, and immediately started complaining!  Signing for the bottle of Pedialyte, signing to go out the door, squirming around.  And she even *looks* more alert.  Dr. Van Burgen is back this morning (her new Cardiologist and the head of the PSHU), and he wants her to get some moving around in today, and some food in her.  He is concerned that the chest tubes have emptied her of fat of all things, and prescribed ice cream!

She is now sitting in mom's lap in a chair with a gazillion tubes and wires stretching across to the bed, watching Baby Einstein.  She has eaten applesauce and ice cream, and attempted to drink some tomato juice with a nice dose of sodium supplement (nurse did manage to get her to take her supplement last night with V8 juice).  The tomato juice isn't popular after a mouthful of ice cream.  I wouldn't say she looks *happy*, but she no longer looks *depressed*.  We actually hope to get her in a wagon and scoot her around the floor a bit today, which will be quite a sight.  She still has about four pumps connected and the drain tubes.  I'll be sure to get a picture if we manage it.

Still webbed to the bed!