Quiet, and not so quiet

I wrote a post two days ago that seems to be lost in the blogosphere. It's unfortunately gone, so this one has to be a condensed version, adding the last two days. :/

Quiet has described Abby's tummy for two days. All the normal gurgles and plops that a belly makes were gone for 9 hours Monday. It was awful to hear the silence in that tummy. We didn't know what was happening, and our (kidspath, pediatrician, and us) thought the ileus was progressing and it was the end of the road. All day Monday, I walked around with such heaviness in my chest. She played and didn't look too bad, which is typical Abby. She's not going to give up easily.

Later that afternoon, her tummy gurgled a little again, and with its return came awful pain and nausea. Yesterday, she had intermittent bowel sounds, but a lot of pain. Too much pain. We made the decision to begin a continuous morphine pump today. The TPN will go for now, but we are nearing the end of our list of options. Her poor little tummy is so much sicker than her spirit. She wants to keep going. I feel so grateful that through all of it, she has remained herself. We didn't lose that part of her that made her who she was. Strong, smiley, feisty Abby Grace.

That may change today with continuous morphine around the clock. I'm preparing for that, but knowing Abby, I doubt it will bring her down too far.

As usual, I fell asleep last night questioning our decision to start the pump. This morning she woke up not so quiet, but screaming in pain. It took 40 minutes and every drug we have to get it under control. That answered any question I might have about what to do.

We don't know exactly what is going on inside her belly, but it's not good. The pediatrician called GI yesterday, but he just wanted to admit her to the hospital. We aren't doing that for any reason anymore, so we are just guessing that Abby is having intermittent, complete ileus. This is not the way we hoped it would go.

When we left the hospital after that BIG decision to stop TPN at some point, we felt confident that we were making the right choice for her. At home, kidspath thought we could control her pain and then see what she looked like.

Quite a bit of time has gone by, and she is still in daily pain. Kidspath sent Abby's case to pain doctors across the country, and what they learned was that this type of pain is extremely difficult to control. Although this downward spiral Abby is on is rare, it's not unheard of. There are very few things we can do for her, and frustratingly, it seems that even comfort is included in that list.

So that brings me to another day, I am praying for comfort, and good quiet for my girl.

As far as the other girls go, they can't wait to go back to school. It's very difficult for them to watch their sister in pain. Emily is doing much better, but she worries about Abby. Hannah and Sarah are bored because we can't leave the house much. They understand, but again, school is looking good to them.

This is one of those days I just don't want to do, but I will. I do have peace with where we are, and for that I am grateful.

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