Monday, October 14, 2013

you have to get worse before you can get better

The older Capri gets the more problems we seem to be having. Since our ER visit she hasn't been able to keep her oxygen up on her own.  Last night as we were getting ready for bed I put on her pulse ox monitor and she was at 79.  We quickly put her oxygen on and turned it up to 1/4 liter. After 30 minutes she was still in the 80s and her heart rate was in the 90s.  We turned it up again and I called the cardiologist.  I know what to do when her heart rate is too high, I haven't had to deal with it being to low though.. this is new to me.  After talking to the doctor (at 11pm) he told me to keep a close eye on her over the next couple of hours and if she got any lower to bring her back to the ER. Sleep is over rated, right?  Or at least that's what people keep telling me.  Finally around 2 I couldn't stay awake anymore so I put her in the crib and turned the monitor on as loud as it would go.  I woke up every 30 minutes or so to make sure she wasn't grey and that her heart rate was okay.  Around 730 her alarms started going off saying her heart rate was too high.  This is where I am more comfortable.  I let her breast feed and it kicked her down from 160 to 130. 

All day today she has struggled with her oxygen.  Barely getting into the ninety's being on 3/4 of a liter.  I have never had to use that much oxygen with her before.  She normally does great on 1/8.  Her lips have been blue most of the day but the rest of her seems fine.  My normal happy smiley baby.  After talking with both her cardiologist and her pediatrician I was told to keep an eye on her but that we can only do so much.  As her heart worsens it is going to get harder to breath and this is just going to be part of our lives until we can make it to the surgery.  Next spring can not come soon enough.  We have to get her that surgery before it gets to bad and our only option is a heart transplant.