Wednesday, August 7, 2013

2am phone calls

2am: I woke up startled hearing music, looking around i realized it was my phone.  801-662... thats the NICU.  Why are they calling me in the middle of the night? I answered and heard the nurse practitioner on the other side.  She has a very strong Australian accent, that added with being on a phone and it being the middle of the night I was struggling to understand what she was trying to say.  After having to repeat herself several times I finally got that Capri had had another arrhythmia episode.  Her oxygen dropped to a dangerous level so they had to bag her for around 10 seconds.  They gave her medicine and she was able to correct her heart on her own.  This is the 3rd time this has happened.  The first time she was able to correct it on her own, the other time she had to be shocked.

After I got off the phone I turned to wake Mike up and let him know what was going on.  Instead I woke up Ashton who had crawled into bed with me.  I forgot that Mike was in California, he wasn't here.  I sent him a text hoping it wouldn't wake him letting him know what the nurse had said.  After a few more hours of tossing and turning, thinking about the worse case scenario, I was finally able to fall back asleep.

This morning we played with the kids and slowly got ready.  The professor was bringing his class in at 3 and I wanted to be there to be a part of it so I was waiting to leave until 12.  We left to go get lunch and on the way my phone rang.  801-662... My heart is back in my throat.  I answer and hear a different nurse this time, one I don't know.  She is the charge nurse calling me to give an update.  The first thing she said was Capri is fine so don't worry.  I let out a sigh of relief assuming she was just going to tell me about last night.  She then proceeded to tell me that Capri has SVT tachacardia, this afternoon her heart rate went up to 220 so they gave her the medicine again to stabilize her.  It didn't work and she went into V-fib.  They shocked her heart to try and fix the rhythm.  Nothing.  They did compressions then shocked her again.  Her heart rate started to go down and slowly went back into that smooth rhythm.  They upped the dose of the beta blocker they put her on this morning and gave her a sedative to help her recover.  She let me know that the cardiologist would be doing an echo soon and they were going to try and figure why she is having these episodes.

I stayed calm and didn't cry through this conversation.  2 weeks ago i wouldn't have been able to do that.  In the back of my head though, I was telling myself you knew this was going to happen.  They have told you time and time again Capri shouldn't be doing this well.  Ebstein kids don't live very long. There is a good chance we are only going to get a month with her.  I hope more than anything that our miracle baby will continue to beat the odds and live a long healthy life, but I know what our odds are and every day is going to be one that we cherish because we don't know when it will be her last.  I called Mike who is on a business trip to California to let him know.  The last time he was at this agency was when I had appendicitis..We do not have great luck when he goes to California.  He was very calm  and gave me a few questions to ask the doctor, one of which was to find out if the thrush medication we started her on 2 days ago could be related to these episodes.  I told him I cant imagine that they are related but i would ask.

As we got to the hospital I went straight to Capris room while my mom and grandmother took the kids to the play area.  I got to the room and held her close to me.  She is covered in tubes and wires, her chest still had the shock pads on.  She was still sedated, looking at her limp body flooded my head with memories of her first week of life.  Every minute wondering if she was going to make it, feeling helpless not knowing how I can help her.  I met with the Cardiologist and she told me the echo came back and looked good.  No significant changes that would cause this.  Ebstein kids have a high chance of arrhythmia and it could just be that her heart is finally healed from the first surgery and is now mis firing.  They also have a 30% chance of having an extra valve that could cause this but the only way to know is by doing a very invasive test that they don't do on infants unless it is absolutely necessary.  She was very optimistic that the beta blocker would fix the problem and we wouldn't have any more episodes.

I asked the Neo natal dr about the thrush medication and she sat and stared at me.  She started to speak, then stopped.  She said that was an excellent question and she hadn't even thought about that.  She would go look up the side effects and see if there was anything in the medication that could be related.  A few minutes later she came back and told our nurse to discontinue the thrush medication.  She said one of the side effects is heart issues.  I am hoping that this was the cause of the SVT and she wont have to go through that again.  I am so grateful for my husband who thinks of things like this.  Something that none of the nurses or cardiologists thought to check.

Just as I was running out of things to write about Capri decided to go and change up the plans.  We will head back up there in the morning to see how she did and I pray to God that i don't get any more phone calls in the middle of the night.