Date night

Today was a hard day for us emotionally.  There was a bunch of unsuccessful weaning of medications, as Jane responded with higher heart rate, as well as dismal blood measurements.  Blood is qualified using a test called “blood-gas”, measuring the pH, Carbon dioxide, and 4 other numbers.  They draw blood approximately 4 times per day for “blood-gas” tests.  This is the reason right now for her current blood transfusions, because she can’t produce blood as fast as they’re drawing it from her.

The nurse tonight had to remove one of Jane’s intravenous lines, which was run in her belly-button, 14 cm up towards her heart.  The line began failing, so they decided to remove it rather than risk infection.  The line came out without breaking ,which would have been a big problem.  Thank God for that little plus for the day.

However, the problem with this is that the respiratory therapist needs to draw Jane’s blood 4-6 times per day for “blood gas”, and now that she doesn’t have the UA line, they need to get it with a needle. I hate watching it.

Umbilical artery line

I was talking with cardiologists this morning about their ideas of a possible surgery, which they still want to wait and watch for a couple weeks.  One of the possible procedures they are considering for Jane would need to be done by a heart surgeon specialist, that specializes in this specific surgery.  This means CHOC would be putting us on a medical plane up to Stanford for this specialized surgery.  This was just a thought brought up, we just HOPE it doesn’t happen.  we really want to avoid/postpone surgery as long as possible.

One of the doctors paid me and Jane a visit privately, giving me much needed reassurance, and letting me know that they are trying their hardest.  Apparently we are giving them reassurance and are making their job easier just by showing we care so so so much about Jane.

We were able to go out on a friday-night date, and it was a wonderful breather, just to get out, and try to take a brake from this mental drain. It was so hard leaving Jane though. And my mom got to babysit Jane for the first time.

In other news, today is Mark Beliakoff’s 29th birthday.  Happy bday and congrats on a huge engagement.

New Machines

Jane might get hooked up to a different respirator machine, called a (I forgot, oops). This new machine changes the breathing rhythm and pressure, and will hopefully help improve her “blood-gas” — remember I taught you yesterday about this?

As I’m writing this, we just found out Little Jane has a little blood clot. Hematologist is coming in 40 minutes to make a plan. In the meatime, she’s going to get an ultrasound of her brain to see if there’s any clotting there.

Today’s been anything but boring.