Sunday

Today really was a day of rest!  Other than a chest x-ray this morning, Rebekah's day was very low-key.  Dr. Bradley came by this morning, and said that last night's x-ray showed some improvement, so at least we are on the right track!  Rebekah will have another x-ray sometime tomorrow, and we are hoping that it will be much improved.  Rebekah was up a lot today.  In fact, she was really in her bed only for naps today.  She wasn't walking around as much today, but she was sitting up in a chair, or on our laps, or on the floor playing and coloring a good bit of today.

Pain control continues to be an issue for Rebekah.  She is fine and wants to get up and play as long as she has good pain coverage.  But, when the pain meds start to wear off, she has cries and whimpers, even in her sleep.  We are trying very hard to keep her pain under control without medicating her so much that she sleeps all day.

We really struggled with Rebekah wanting something to drink today.  She just doesn't understand why she can't have a sip of water, or juice, or milk.  It is so hard to try to distract her or get her to accept another choice.  I had Rebekah's nurse call the speech pathologist this afternoon to check with her to see if Rebekah could have a milkshake.  My reasoning is that it is as thick as the yogurt/pudding/applesauce/ice cream consistency that has been approved for Rebekah to eat.  Thankfully the speech path. agreed and we were able to get a milkshake for Rebekah to drink.  I think it just made her feel better to have something wet in her mouth.  Rebekah actually ate very well today.  She had an entire serving of mandarin oranges for lunch along with a few green peas and the milkshake.  For dinner she ate a large (for her) portion of my salad.

After the discouraging news yesterday about Rebekah's vocal cords, we had some really, really good news today.  Rebekah has been OFF her oxygen for about five hours today, and has kept her sats above 90%!!!  We hadn't really let ourselves hope that Rebekah would go home without oxygen, but it looks like that might be a very real possibility!  Before surgery, Rebekah had absolutely perfect sats (between 98-100%) without oxygen.  After surgery, she has been from about 85-100%.  Some of the lower sats could be attributed to the fluid still remaining on her lungs.  However, Dr. Bradley thinks that possibly the re-routing of the blood flow through her lungs may have lowered her sats just a bit.  He is fine with her sats being above 90%, and she has kept them up so far today since the oxygen was turned off.  We'll continue to monitor the sats in the hospital, and then occasionally for a few weeks after we get home to make sure things are still where they need to be.

So tomorrow morning, sometime around 9:00, Rebekah will have her swallow study.  They will be giving her different consistencies of food and beverages to see if she aspirates any of them into her lungs.  The food should not be a problem, but there is some concern that she is aspirating thin liquids.  We would certainly appreciate your prayers for the swallow study tomorrow!

Nancy