She's sick. She's just a sick girl and there isn't really another way to say it. Her belly is not working any better than it was in March. She is sick, nauseated, and bloated. She just looks sick. She has moments during everyday when she seems to feel a little better, but in general she's pale. Everyday seems a little worse.
**line description warning!!**
She has an infection at her line site. I thought about a picture here, but even I have limits. They finally took the dressing off today to clean it, which set off a series of calls and opinions about what to do with it. Basically, there is a moderately deep hole where the old Broviac was that is filled with infection. That has spread to the new line making the insertion site badly infected. The skin no longer holds the stitches in and all of it is draining causing condensation under the bandage. The buck stopped with the surgeon who had the nurse re-dress it with gauze to absorb whatever may drain. They also re-cultured it. I was glad for the gauze, I didn't want to see it anymore. It upsets me. Tomorrow the surgeon will clean it up. Most of the doctors think we can still save the line, so I'm praying they are right.
Brave Abby endured that pain with a steady stream of "ow", but no tears. The same little girl who cries like the world is ending when I walk out of the room sat stoically as someone poked a q-tip in a hole in her chest.
We continue to need the line because her belly is not processing her food well. We are at 30 as far as rate goes...45 to go :(. We did a gastric emptying study yesterday. They put food in and followed it for 2 hours. We only put 2 ounces in because we thought Abby could handle that. The results of the test were that at the final film, 4 hours after we put the food there 85% had left her belly and was sitting in the small bowel. She did not process 2 ounces in 4 hours. No wonder the poor kid has trouble. The GI doctor was happy it left the belly at all. I did not see this as good news because it never occurred to me that it wouldn't leave, it's just soooo slow.
In a last ditch effort to help her tummy, the doctor decided to have the neurosurgeon come in to turn her Baclofen pump down. They want to be sure the medicine isn't slowing her tummy down. The NS didn't think it was, but agreed to try it. They turned it down 20% while I was in the cafeteria. Thank God. I was down there seriously re-thinking that plan. I hope it doesn't help. I think she really needs the pump, so if it's causing all this tummy trouble, we'd be in a crummy place (again) with her. I want her better, she's just so stiff and uncomfortable without the right dose running through the pump.
Emily is doing well. The PICC came out today, so we are just working on tweaking a few meds and schedule-type things before she goes home Monday. She hasn't run a fever today at all, so we all think it was just time for the PICC to go. I can't tell you how thankful I am that Emily has done so well. She still has a long way to go physically, but in every other way, she the same Em :)
I've had a really hard day. Emotionally, dealing with all of this has been overwhelming. There is so much information to take in and process; so many decisions to be made all the time. This move looming over our heads is about to make me lose my mind. We had hoped to move the last week of July, so watching ANOTHER move date come and go is almost more than I can bear.
As I was explaining this to the Dr. today, he mentioned that we may be able to transfer Abby to another hospital in NC. We hope that we don't need to do that, but it's a very real possibility. It made me feel better. I think I needed to know that no matter what happens, our family can be together. It's obvious that waiting for her to get well is not a wise plan. We are moving forward with our move and praying Abby is well enough to go with us. Lot's of prayer and planning need to go in to the next 2 weeks! My girl and I may have to be much braver in the next few weeks than either one of us would ever wish to be.
Lord, only You could work this out. I thank you for what you've already done and for what you will do. You are my all in all.
To end on a good note and some sweet pictures, child-life decorated the kids rooms this week. It was really sweet and they both loved it. Emily also got a very special visit from a CCI facility dog Murry. It made us both miss Nola, but it was fun.
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