If I don't get this out, I may emotionally fall apart.
Mylah has had a few setbacks, all beginning with not wanting to eat. She has been fussy and sad all day long. The doctor finally realized that she was pretty dependent on a drug called Precedex. It was a drug to help her relax post op and because she had it for so long she now was withdrawing from it, per se, and staying awake for long periods and then being overly tired and not being able to sleep.
This was a bad cycle and was happening all morning. She had her chest tube removed as well, and after some morphine for that, she rested.
She spent the day not eating or having any urine output, so they put her back on an IV after she was successfully freed of most of her lines and medicines. Bummer.
Along with that she spiked a fever of 103 and had to have her blood cultured and a urine sample taken. It could take a few days to get the culture back so we will see how much longer we have to stay.
It's just been so overwhelming and frustrating. I am so sad that we might stay because Dallin has his very first Little League game tomorrow and we will miss it. He also celebrates his 6th birthday this Sat. and I was so hoping to do something special with him. Rylee mentions daily that I miss her...in her vocab that means she misses me. I know I can't be two places at once, but how I wish I could.
My heart aches for Mylah and her pain and setbacks. And I wish I could be home with Dallin and Rylee. It's so hard.
I have tried to be so strong this entire time, but sometimes you just need to cry. I bawled to my Mom on the phone and feel a little better. Things will work out for our family's good. They always do. Our Heavenly Father knows what we need and can handle. It is such a blessing and honor for us to experience this trial.
Say a little prayer for our precious miracle heart baby. Pray for no more setbacks.
Love to you all...