More Bradycardia

Yesterday morning, Annie's heart rate stabilized around 6am after her long, scary night with heart rates in the 30s and 40s.  Annie she perked up yesterday and was acting very alert and like her normal self in the morning.  We were so relieved that the morning was going well, and I was about to head home to take a break after such a stressful night when Annie's bradycardia returned and her blood pressure began dropping again too. 

Annie took a few of her typical cat naps in the morning yesterday, but at 11:00am she fell into a much deeper sleep and her heart rates began slipping down again.  We wanted to stay right on top if it this time so it didn't progress into such a crisis like it did the night before.  We wanted to get her pedialyte running earlier that day, but despite the fact that they told us her g-tube feedings were up to us, they wouldn't give us clearance to start her pedialyte.

Annie's heart rates continued to drop into the 50s and 60s and dipped into the 40s a few times for just a short while yesterday afternoon.  They drew blood to check her electrolytes and hemoglobin and then started her on another IV saline bolus.  We had been trying to get her a bed bath earlier that morning when she was awake, so we decided to go ahead with it even while having this bradycardia, thinking that the stimulation of the bed bath would arouse her and stimulate her heart.

The bed bath worked as we expected, although maybe a little too well.  Annie fussed through the whole thing, which I was honestly happy to hear!  I'd rather hear her crying and fussing than watch her lay in her bed completely unresponsive to me!  We even washed her hair, but after getting her all cleaned up, her fussiness and irritation turned into a stronger cry of pain. 

She had a blow-out in her diaper before her bath, which soiled the dressings half way up her back.  Those dressings all had to get changed, and then the nurse had to rub Annie's incision with a sterilizing solution to protect the fresh wound from infection.  We think that caused a lot of pain and irritation making Annie really upset.  But at least her heart rate was back up to 110!  However, even after we stopped messing with her, she continued to be in quite a bit of pain, so we slowly gave her morphine--just enough to take away the pain because we didn't want it lowering her heart rate any further.

Annie's labs came back actually pretty good with stable sodium and potassium levels. Her creatinine continues to drop which is great, and her hemoglobin is 8.7--still very low, but very slowly heading in the right direction.  Her white blood cell count is now down to 18,000, so that is very good news as well.

The hospitalist thinks Annie is having these episodes of bradycardia because of central nervous system issues related to Aicardi Syndrome. He believes that because she has been under general anesthesia 3 times in the last week, that her brain is having a harder time after each procedure of getting her rhythms regulated again.  I agree that having 3 rounds of general anesthesia and 2 very invasive surgeries in a week is definitely a lot for Annie to recover from, but I also know that she wouldn't have had so many difficulties if her electrolytes had been better managed.

I asked the hospitalist what the plan is for if/when Annie's heart rate continues to drop again, and his answer shocked me again!  He said they would give another IV saline bolus, and take efforts to keep her body temperature up.  That was it.  I asked at what point he would consider giving her atropine to stimulate her heart, and all he said was that if she needed atropine, she would have to be in the ICU.  He went on to say that he wouldn't be worried about a heart rate in the 30s as long as the beat was still strong--as long as the heart was doing what it was supposed to do, it didn't matter if it was doing it more slowly!!  I'm still stunned by his approach to bradycardia!  So I'm really praying that Annie doesn't have any more episodes!

Annie is still off the oral vancomycin which makes me really nervous.  It is the medication that will protect her against another serious c-diff infection.  I'm eager to get her back on it, but we're being told she can't have it until food is moving through her tummy more normally.  I don't quite understand that because we continue to give her all her other oral meds without any problems.

We did manage to finally get some pedialyte started yesterday at a slow rate of 25cc/hr, and increased that to 50cc/hr late last night.  This morning Annie is more her usual self which is a relief to see.  She has had some retching and gagging and we've vented yellow bile from her tummy (which is more normal for her than green), so we'll continue to go slow on her feedings.  She usually tolerates feeds much better than this after surgery, so we are starting to wonder if one of her antibiotics might be causing some nausea or if she has some other kind of issue possibly going on.  We'll just have to give her some more time to recover before we'll know.

The plan is to tentatively start the ertapenem tomorrow and start working to get her on the regimen of IV antibiotics that she'll continue for a year.  We'll need to monitor her on those for several days, and work to get her back on her formula.  Dr. Hasley came by this morning with his about-3-year-old son.  SO cute!  Dr. Hasley said he thinks Annie's looking good and plans to pull the drain out of her back tomorrow or the next day.  Her flow has slowed down, but he suspects that as she is up and moving around more today, we'll be able to get a little more out--getting that excess fluid out is a good thing!

So today is looking up.  Annie still has some hurdles this next week, but I think we're heading in the right direction.  We really appreciate everyone's prayers and love.  For some reason we weren't able to access Facebook at the hospital for a couple of days, so now that it's working again today, it's been wonderful to read everyone's kind comments and expressions of love and support. Thank you!