Well three days ago I took that video of Ava and she was quite happy – and then yesterday the little monkey went downhill again. When I went to see her yesterday morning her heart rate and respiratory rate were up and her oxygen saturation levels were down. They were worried she was getting sick, and then when they went to access her picc line for blood work – the picc was sluggish and they couldn’t draw blood back in the line. That made me and the Cardiology Fellow wonder if perhaps Ava hadn’t properly been getting all of her heart medication that she gets through her picc. She is so dependant on her milrinone that if she didn’t get enough of it over-night, she would definitely be showing worse signs of heart failure, even if she was or wasn’t getting an infection.
But irregardless, her temp was also up, so they had to do blood work once again to see if they could find pinpoint any source of infection. Later in the day it came up that there were some markers for infection in her blood – her white blood cell count was up and her nutrafils were up as well – but we have to wait 48 hours for blood culture results to come back. Just to cover all her bases, the Dr put Ava on two strong anti-biotics in case there was something, because we all know that Ava has no resources to fight an infection on her own. Towards the end of the day last night she also started de-satting again so we had to add oxygen to her CPAP, something we’ve never had to do before, so that wasn’t a good sign, but she was sleeping quite comfortably so I felt Ok to leave her for the night.
Then early this morning I got a call from Ava’s Doctor telling me that Ava didn” look great and that I should come to the hospital. And when I got there, Ava did look quite ill, but at least opened her eyes for me and they were relieved because she had seemed so out of it before. But she just didn’t look like herself, and the fact that she was also fluid over-loaded didn’t help. But as the day went on she did get a bit better. The nurses gave her some medication to help her sleep and some morphine so she would be comfortable and she slept most of the day. Towards the end of today I actually got a smile out of her which was wonderful. And we were able to turn down her oxygen a bit and so praise God she does seem to be on the mend, but I guess with Ava you never can really tell.
Oh my Ava! These episodes of hers are certainly stressful and seem to take years off of my life. But even though I cry and wonder each time if I’m losing my baby, I also feel an over-whelming sence of peace, that no matter what happens either way, it will be OK – God will give Jason and I His grace and strength to get through it.
But where there is life there is hope! And even though we are experiencing another bump in the road, Ava’s journey is not over yet, God may still bring this baby a new heart!!
