Tuesday Night

Well, what's a recovery without a few bumps in the road?  :)  Honestly, Rebekah is doing so, so well for having been out of surgery for only 30+ hours.  She is having a few little "bumps," but all of them are totally normal, and we really expected them.

First, Rebekah has been running a fever off and on throughout the day.  It is pretty normal for a fever to follow anesthesia, and so far it has not been a high fever.  Next, Rebekah's digestive system still hasn't woken up from the anesthesia.  We were very excited that Rebekah was drinking apple juice today, and it is a good thing.  BUT, the juice went to her stomach and stayed there.  Rebekah had trouble all day with retching and gagging, so  around 4:00 this afternoon I asked Rebekah's nurse to check her stomach contents.  She pulled out (through Rebekah's g-tube) all of the apple juice that Rebekah had during the day.  We realized that Rebekah's poor stomach was so full that it was causing her to be very nauseated.

Soooo, Rebekah is on a restricted diet at the moment.  They are going to let her have small sips of water or juice, but only very, very small sips mainly just to coat her sore throat.  They are also going to run feeds overnight, but it will be Pedialyte at 5mls/hour.  The nurses will be checking stomach contents every few hours to make sure that Rebekah's belly is not filling up and causing her discomfort.

Also, Rebekah is retaining fluids a little bit, so she was started on a second diuretic this afternoon.  She usually takes Lasix on a daily basis, but they have added Diurel to the Lasix to try to get her to output some fluid.  Because of the fluid retention, Rebekah's lungs are having to work a bit harder.  This afternoon her sats were dipping a little below her normal.  We are hoping that will resolve once she loses some fluid.

All in all, we are still very, very pleased with where Rebekah is right now.  These little bumps are completely expected and are very mild in terms of what she could be facing right now.  Thank you again for your prayers for our baby girl!

Nancy

Not to leave you hanging....

Rebekah was not the one who had a procedure done this morning. It was her little buddy in the bed next to us. He had to have a chest tube inserted to drain some fluid off his lungs.

Rebekah looks very cute today. She has a purple bow in her hair and purple socks on and all of her little friends (stuffed animals) are hanging out in her crib with her. She has gotten so many comments on the big pink hippo that she got from our church before surgery. It is a little eye-catching! :)

We were able to talk with Dr. Graham just a few minutes ago, and he is planning to let Rebekah have another day of rest today. Yesterday there was talk of extubating Rebekah today, but that has been placed on hold until Rebekah gets rid of more fluid. This morning the doctors increased the amount of Diurel that Rebekah is getting, and she is still on the Bumex every 6 hours as well as the Bumex drip. We're hoping to see lots of output today!

Dr. Graham did favor reducing the amount of Rebekah's morphine today to allow her body to take over more work on its own. Right now, Rebekah is on a Precedex drip, a morphine drip and bolus morphine and versed combinations every six hours. That's a lot of sedation! He wants to gradually reduce the amount of morphine that Rebekah is getting and increase the Precedex if necessary. So, the Precedex will allow Rebekah's body to wake up without Rebekah being consciously awake, and that is the goal. Dr. Graham still wants Rebekah to sleep, but he wants her to start breathing more on her own. So far this morning, Rebekah is making an effort to breathe over the ventilator, and that is good news!

Rebekah did have an echocardiogram and chest x-rays early this morning. The echo still showed dysfunction in the right side of her heart, but Dr. Graham thought it looked a slight bit better than yesterday. Rebekah's lungs are very wet, again due to excess fluid, but that is another reason to keep her on the vent for today. There is no sense in making her body work even harder than it already will when we transition her off the vent.

That's about it for the morning update. As I have been sitting here, the diuretics are beginning to work a little, so that's good news! So far this morning Rebekah has a negative fluid balance, which is exactly what they want to see at the end of the day. (Negative fluid balance means that she peed out more fluid than she took in. That's what will get rid of the excess fluid.) Oh, Dr. Graham also said they will begin feeding Rebekah small amounts (of what, I have no idea) to see how her stomach can handle the food. Probably they will start with Pedialyte or Pediasure and go from there.

Thanks for praying for our sweet Rebekah Grace!!

Nancy

Sunday Morning

Good morning to all! Rebekah had a very stable night, but made no improvements. She had done so well peeing off fluid for a couple of hours last night, but overnight slowed down considerably. The doctors have started a Bumex drip (constant IV drip) in addition to the Bumex and Diurel meds she was getting every six hours. The doctors don't want to make a lot of adjustments or try anything new to get Rebekah's pressures down until the fluid is resolved. So, right now we need lots and lots of fluid output!

In other news, the pressures that we thought had dropped some yesterday afternoon have not really dropped at all. Late last night (much later than my last post), Rebekah's nurse and I realized that the pressure probe inside Rebekah's conduit was not reading accurately. So, after flushing the line, we got a very accurate reading. Rebekah's PA pressure is almost equal to, and sometimes higher than, her systemic pressure. This is not the trend that the doctors wanted to see! They had really hoped to see those numbers growing farther apart. But, again, they are not ready to make a move toward intervention at this point until a lot of that fluid is resolved and we can see how her heart reacts under less stress.

We are at the hospital now, but have not been able to see Rebekah because the doctors are doing a procedure. Whether or not it is on Rebekah or another child we have no idea, but it will be a little longer before we are able to see Rebekah this morning.

Hope you all have a great Sunday!

Nancy