This is what Josiah said to me last night. I asked what he meant, and he continued after a pause with, "...this way." It broke my heart. What do you say to that? How does a parent respond when we don't even know the answers? What is the answer to the question, "Why did God create Satan and let bad things happen?" Josiah is so sensitive and sweet that it physically hurts him when Isaiah hurts.
Once again, our family is pulled apart. Isaiah was rushed yesterday evening down to CHOP for severe belly pain. He's been having increased episodes of pain and retching over the past 4 months, along with bowel slowing. We've been back and forth with doctors and were down to a specialist on July 24th. A barium swallow test was done. But, like every other test, it came back relatively normal. It didn't explain any of Isaiah's increased pain, retching, nausea. Last night's X-ray did show a blockage, and the doctors are trying to get the blockage to resolve without surgery. Thankfully, Dr. Doolin, the surgeon who saved his life last June, was there to see and examine Isaiah. Currently, Isaiah has an NG tube to suction, his G-tube to gravity, IV fluids, and is not allowed to have anything by mouth. He's been crying to me on the phone that he's thirsty and wants to come home. I don't even know what to do anymore.
We were dealt another blow right before Isaiah's admittance to CHOP last Thursday. Isaiah failed his sleep study test on July 8-9th. Per his pulmonologist, Isaiah frequently dropped his oxygen levels into 70% while asleep, and even a few times into the 60%. Normal is to be 92%-100%. Now, Isaiah needs to sleep with oxygen at night and during naps. This was really hard for me to come home and see my little guy hooked up to an oxygen tank. I really don't know how he keeps going and keeps a smile on his face.
I don't know what to ask for anymore. I am beaten down, exhausted, unsure of what to do next. Chris and I are trying to survive and trying to make our boys feel loved and safe. Don't know how we are doing. Don't know how to ask for God's intervention. Don't know if He even hears anymore.