Night before surgery

Fairly eventful day today.  Confirmed Muriel's surgery will be around noon tomorrow, and we signed all the paperwork this afternoon to authorize it.  We've done that twice so far, but it is still emotionally difficult to listen to and acknowledge (in writing!) all the things that could possibly go wrong.  We did manage it without a tissue box this time.

Sitting in the window with Mommy

The most stressful part of the day, however, was an order to draw 4.5ml of blood for various pre-op tests.  We are aware that she is difficult to "stick", mainly because of the number of times she has had to have it performed.  I'm not entirely sure the Phlebotomist that was asked to do it this afternoon was informed.  He seemed confident enough though I grilled him repeatedly (I can imagine what he thinks of me), but the first attempt failed to draw any.  Muriel does not take well to having her arm punctured, certainly not repeatedly.  The second attempt I believe he was visually nervous, probably because I was breathing down his neck.  The draw started, but stopped flowing at 3.5ml, 1ml short for the tests required for surgery.  Muriel had nearly passed out again from screaming and writhing around when he pulled out from the second attempt, and we agreed they would go to the lab with what they got and hope that it would be enough for the three tests needed.

We found out later that the entire sample was wasted due to coagulation.  Hard to say what caused it, though I did a bit of searching online and the general consensus is either the wrong test tube (not coated with anti-coagulation agents) or the sample wasn't properly mixed / shaken at draw time to prevent this (presumably to mix the anti-coagulation agent with the blood).  Needless to say this made us fairly upset.

Our floor nurse had a chat with the surgeon's nurse to see what solution could be arranged that didn't involve torturing her again today or worse tomorrow morning before surgery.  The surgeons agreed that they would do the labs during her operation tomorrow, thankfully.  I'm not sure what that means for the operation itself (will it be extended to wait for lab results?) and it is one of the questions I will be asking in the morning.

Dr. Shetty listens to her new patient's heart the old fashioned way!

Finally we had a session with three therapists - speech and two physical.  They are part of Dr. Van Burgen's team and wanted to take a baseline of her scores in these areas pre-surgery.  This was about an hour of simple tests disguised as play to observe her dexterity, ability to solve simple problems, and ability to communicate.  It seems that heart patients in particular are at high risk for slow development, so we have had a few of these sessions to track her progress, such that intervention could take place as soon as possible if needed.  No intervention needed now - they actually felt that mentally she was ahead of her age, which was nice to hear.  They would like to see her vocabulary increase over the next few months (our main concern), but had no reason to think that it won't.  Also nice to hear.

With all of this going on today, she had no nap.  She is *particularly* cranky tonight as a result.  We have been trying to get her to eat something for a few hours now without much luck.  She finally agreed to drink a bottle of soy milk, which is a bit of a regression since she has been off bottles for several months now, but allowed tonight!  She can't have anything but clear liquids after 3am tonight, and we are afraid she is going to wake up very hungry in the morning if we don't stuff her well tonight.

So... long day, will be a sleepless night due to anxiety.  Wish us luck tomorrow.  I'll post updates from the waiting room.