Impossible Choices

When you have a child with a terminal illness, you come to some point of acceptance with the idea that they will pass one day, but I (Chip) can honestly say the process of passing was never really dwelled on; it was just a distant known. I think in my mind I hoped we would be living as usual with her normal set of problems that we adapted to as they arose and then one day her body would say no more and pass peacefully in her sleep.  

If you can't wear clothes cause of fever, you gotta at least have pretty girly bows!

Here we are 7 days after hospice first said her lungs had fluid and she was likely making the transition. Early on it made clear sense; her body had too much fluid from feeding, so no more fluid. We gave it a few days and tried to feed her again, but her body said no so the answer was clear no food. After 3 days of barely feeding your child anything you start to wonder, what if she could handle some food or even a little water and we are starving her; maybe she just needed less. By the fourth day we felt like we had to try something so we gave her a little water just to see and help her if we could. Her body took it with no bile back up. On day 5 water went ok so we tried a mix of Pedialyte and water and her body took it. On day 6 we tried food again in a lower concentration and volume and her body took it. At this point it seemed hard to say no food because her body was telling us she could take it, but as we have learned all along the way with this disease everything is a balance of give and take.

Cole checking out the neighborhood while hanging out upstairs with his big sis

When she was without food for three days her breathing sounded better and her heart rates and O2 were good, but she was starving.  Now three days into giving her water, then Pedialyte, then food, she is more alert, her eyes no longer look as bloodshot, but her breathing sounds horrible again, she coughs to no avail to clear herself, and makes these horrible sounds like she is gasping at times. Her only relief to quiet calm breathing seems to come with sleep and the pain meds to help her calm down.

She has definitely lost weight, you can tell in her arms, chest and legs

How is a parent supposed to choose to not feed and feel like they are starving their child to death knowing their body can take some food, but feel like if they feed their child they might be slowly suffocating their lungs with liquid? I always knew the disease would take her life, but I never really prepared myself for thinking the choices we would have to make might affect how long she lives and how she might pass. They are impossible choices with no right answer and no good outcome, but we have to make them and live with them. We have resigned to trying what we think is best and knowing that’s all Kaitlyn or anyone could ask of us, but it doesn’t make it any easier.

Kaitlyn and Cole enjoying some Baby Einstein together

For all those that are praying for Kaitlyn and us, I ask that not only do you pray for peace and comfort, but for clarity in making the best choices. Kaitlyn is here and fighting and we just want what is best and most comfortable for her.  Thank you all for your continued support and overwhelming love.