Today is the 8th day that we have held Kaitlyn's feedings. It's really hard to believe. She has lost a lot of weight in her belly, which I would think would make her feel more comfortable since her belly was so large and tight due to her enlarged liver and spleen. There is more room in there now which I would think would mean less pressure. Just my own thoughts though.
Kaitlyn's heart rate went up and is now a little lower. Her oxygen concentration is still pretty low but not as low as it was. This morning we couldn't get the pulse/ox machine to read on her toe. Stephanie, RN said that this could happen when her circulation gets less efficient and would result in a very weak, possibly unreadable pulse. We have it on her thumb now and it is working fine. It's currently reading is 84 O2 and 113 heart rate.
Yesterday we started giving her morphine more often (every 2 hours) and added Valium (diazepam) every 4 hours. She has become more and more unresponsive over the past few days. This morning we checked her pupils and they don't react at all with a pen light. She could possibly be in a coma. She's still breathing and "stable" for now.
We are going to cut back a little on her meds, as far as how often we are giving to her to see if makes any difference.
As a parent, you so desperately want more time with your child but at the same time if she is asleep, she is probably not feeling any pain and is probably half-way to heaven already. Who are we to change that? The end result will be the same no matter what we do. We just have to have faith and trust that God will guide us through this.
A wee bit of heaven
drifted down from above.
A handful of happiness
a heart full of love.
The mystery of life
so sacred and sweet,
The giver of joy
so deep and complete.
Precious and priceless,
so loveable too -The world's sweetest miracle,
Kaitlyn, is you.