I recant that the days at home with a toddler and baby are the hardest days I’ve known . Fifteen days in the hospital with a rambunctious, homesick toddler and a smiley but heartsick baby are much harder. I told a friend that these days are more challenging than any I ever imagined facing in my worst nightmare.
But it’s not a nightmare. I’m not comfortably snuggled under my flannel sheets while the details unfold. I’m painfully awake from the exhaustion of unending, worry-filled hours. This is my real life.
Yesterday the surgical fellow came to consent me for Annie’s heart cath. She explained that Annie would probably get a blood clot, could experience arrhythmia, might have problems with anesthesia, and oh yes–she could also die during the 2-hour procedure. Signature please?
The good news is that the doctor thought everything in Annie’s heart looked exactly as it should, including the connections and repairs done during her first surgery. The bad news is that the doctor thought everything in Annie’s heart looked exactly as it should, leaving us still without any known causes for her right ventricle failure. Since they can’t identify a cause, they can’t administer a fix.
They did determine though that the surgeon agrees to still move forward with repairs on her birth heart! Great news! But because her heart is already failing, they can’t guarantee results. At this point though, they still see it as the best option for Annie.
We were happy until this morning when we saw Annie. Her nurse said she wasn’t doing well. She was on a lot of oxygen, she had fever, she was coughing a lot, and her sats were in the 50s. Not the way I put her to bed last night! For the first day ever, our Annie is actually sick. So sick that they gave her a blood transfusion through the new picc line that resides pseudo permanently in her leg. And it’s also been confirmed that she has a cold.
Honestly, I’m angry! “A cold on top of everything else?? Could’ve skipped us this time around, God!” But even as I mumble it, my heart stings. He’s not skipping us. I have another day with Annie. Another day where she cries congestedly for me. Another day where the doctors have agreed to do all they can to give her a chance at life outside this 6th floor room. Another day where Audrey gets to kiss her baby sister. Another day where I get to rock both of them to sleep.
The plan is to begin weaning Annie off of her IV drug and convert her to oral medication to treat her heart failure. We have tried this twice during our two weeks here already. Both failed attempts. So we will try again with a different medication and see how her heart responds.
For now we know that her heart failure blood count numbers doubled overnight. They are saying it could be related to various fluids still from the cath or it could be true. They will recheck with a blood draw on Monday.
And for now we are starting to feel like we can’t catch a break! Phew! Can someone wake me up when it’s all over?