Sunday, December 18, 2011

Today's update.

The morning started off with me feeling quite defeated.  I thought we might get to go home today, but alas the doctor had a different idea.  However, after a long day, and Jason getting to join me for about six hours, I feel a little bit better, and somewhat refreshed.  The man I love being here with me always makes me feel better.
So here's the basic rundown.  Shilo DID need an NG tube.  In order to send us home with one we both have to be trained in how to insert it.  We have to successfully do it, and the feeding two times.  And we both got our gold stars.  The tube is just to help her get extra calories.  We are still feeding her by mouth, and after twenty to thirty minutes, whatever she hasn't taken gets put in the NG tube.  This is not a permanent fixture, matter of fact she is already taking about 25-30 of the 45 ml that she is required, by mouth.  The doctors seem to believe once she gets a little bigger that she will have the endurance to take it all by mouth.  So there is NO reason to do a permanent G tube, because she won't permanently need it.  On top of that we really want her to do as much by mouth as possible, and to avoid another surgery.  She tolerates the tube well, and is still more than willing to eat with it in so we feel very confident in this choice.
She still is having some trouble with her o2 sats.  The cardiologist will be coming tomorrow to talk to us about it, and we will hopefully figure out if we can just go home with oxygen.  That seems so minor, and like a silly reason for us to be stuck here.
I feel like I've really gained a handle on Shilo and medical stuff in the last few days.  I've made a few nurses very angry as they have tried to turn her o2 up without realizing that she has a heart defect and pulmonary hypertension so her sats are not supposed to be in the high 90's like everyone else.  One nurse in particular probably has a dart board at home with my picture on it now.  I argued with him several times that he was not going to turn her oxygen up.  He called the doctor to try to override me, and the doctor agreed with me so from there on out he was a little more kind about it. 

That's really about it.  I am praying that we can go home tomorrow and get a few days of rest before the holiday festivities begin.


  1. I well know the feeling of arguing about what is best for my baby. You will always know her best, and once you get the hang of the medical side down too, you will find yourself even more willing to argue about what is best FOR her. The greatest detriment to our kids are people who try to be kind by doing things for them, when it is really best to allow them to show us what they're really made of.
    Praying you get home tomorrow..... :)

  2. Lots of prayers for a stronger and bigger little Shilo.