Our precious Avelyn has struggled since her tenckhoff catheter placement and most recent heart surgery. She has packed on so much fluid that at times she was barely recognizable. She has struggled with pain and mechanical issues like a clogged and/or leaking PD catheter. She went days without dialysis due to these issues. Now she struggles with ventilation. She is on such high ventilator support it is causing damage to her lungs. Yesterday she developed a pnuemothorax and today her left lung collapsed due to trying to keep her right side elevated to heal the pneumo. We have also learned her kidneys are scared, meaning permanent damage-though we don't know the degree.
When you add all this up it doesn't look good for our precious girl. We had a care conference today, where we met with those involved in her care. We were told that the chances of her surviving at all aren't good, and the chances of her surviving with a quality of life Sean and I would hope for her are quite slim.
She was given a week to try and the extra fluid off. Getting her back to normal size will be a challenge that she may not accomplish. Even if she does manage to get back to her dry weight, she'll still have so many other mountains to climb. First and foremost, she'll have to come off the ventilator. We don't know if she'll be able to accomplish that, the doctors aren't too hopeful that she will. She's been ventilated for months.
While we have not given up hope, or given up on her, we have to be realistic. And that means the next couple weeks are likely all we have left with our precious baby. She has been put through so much pain, and while she continues to fight on, we do not wish to put her through any further pain unnecessarily.
As one can imagine, Sean and I are beside ourselves. I am supposed to return to work tomorrow but can't bring myself to leave her room, let alone drive 5 hours away. We have been trying to savor every moment we can with our beautiful daughter.
She is such a precious soul.
She deserves comfort and peace, please pray God sees fit to grant her such and that we may bear witness to it.