I'll try to condense what's going on.
I want to start with Monday, because it was a gift. Plain and simple. God, in his goodness gave Abby back to us for a few hours. She laughed and played. She didn't seem drugged or in pain. She spoke with a clear, strong Abby voice. I had forgotten her laugh. She's been so sick that we haven't heard it in a long time. It was like a miracle. She was so much like the old Abby, it brings tears to my eyes even now. As the day wore on, our problems returned.
But not for a single second did the return of pain and sleepiness diminish the gift of those happy moments with my daughter. I know that God gave us that refuge and I am thankful. He knew we needed her, even for a little while.
Yesterday was very hard for her. It was one of those days we just made it through. Holding and trying to comfort all day long. Today, she had a GI appointment that we had debated about keeping. We decided to see Dr. Gomaz again, to work on more comfort measures. She didn't feel well at all. She woke up with 100.5 temp and was very pale. She had pain and her belly was a little tight. An x-ray revealed large amounts of contrast from her upper GI 3 weeks ago in her intestines. Nothing is moving through that belly. It was yet another confirmation of severe dysmotility.
All that white is contrast that doesn't belong there.
Although Dr. Gomaz wanted to admit her, we decided to bring her home with a hydration and clean out the contrast plan. Unfortunately, by the time we got home, her temp was 102.8. We thought it could be the central line, so the pediatrician was going to order home IV antibiotics and fluid bolus'. When we got down to it, they realized that the antibiotic could interact with the fentanyl and tramadol she's on, so we had to bring her to the hospital to be monitored while we started antibiotics.
So, here we are. In the place I thought I'd never be again with her. And I'm glad we're here- even weirder. She looks SO bad. She's an icky yellow-gray-pale color. She's barely waking up, no matter what we do. Her heart rate has been up, blood pressure down, and sats all over. I would have been afraid at home with her level of consciousness.
This line of keeping her comfortable without being overly invasive is an awful one to walk. I'm this girls mother and I want to scream FIX IT! But, I'm this girls mother and I owe it to her to acknowledge that it can't be fixed and love her through it. We are doing antibiotics because blood infections would not be a nice way to go. We know this is Abby's last central line, but we still see treating infection as a comfort measure.
This is an extremely difficult time. We are trying to pray our way through it with every single breath. It's a blessing to have family and friends praying along with us. Jeff's mom and step dad have been here for a few weeks loving on Abby. My mom and aunt came last weekend, which was awesome. We know that we are not alone. Thanks to all of you praying each day. Can ya add Emily to that list? She's struggling with seizures and other issues that we don't have time to address, so she could definitely use some prayer time!
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