Yesterday was not a great day. Not for Rachel, or any of us watching her go through what she did. The pain from the surgery hit her like a truck. The incision gives her a stabbing pain every time she tries to cough. She could feel the junk inside her lungs that needed to come out but she couldn’t cough hard enough to get it out because of the pain. Since she was taken off the epidural pain medication, the doctors were working her onto an oral pain med. She needs enough medication to be able to cough without too much pain, but not too much to make her sleepy. The nurse we had yesterday and today isn’t the nicest person in the world, and didn’t seem to want to give Rachel the medication she needed. She was also very pushy about her getting up and walking, but Rachel couldn’t get up because of the pain as well.
It was like this all day yesterday. Rachel sat in a chair and we went back and forth with the nurse who couldn’t seem to understand what we were talking about or what the doctors had told us. Finally at 10pm, when the night nurse was on, Rachel got the higher dose she needed. She slept much better and today she is feeling100 times better than yesterday.
Today the doctors said that because of Rachel’s inability to walk yesterday, that her lung function was down slightly. This is due to her not being able to breathe deeply and cough up the fluid in the bottom of her lungs. We’ve already gotten up and walked two laps twice, walked some stairs, and done some breathing exercises. Rachel has also coughed up some pretty awesome works of art. She’s doing much better, but her white blood cell count is up a little which the doctors are checking out. This could be due something like an inflammation or minor infection. They told us it’s nothing to worry about though.
Brian came in this morning to talk about yesterday’s rough day. He said that today’s a new day, and that we need to encourage Rachel to get up and move every 2 hours to keep her on course to get out of here tomorrow. The bronch doctor came in to make sure that she was coughing stuff up, since it’s imperative that she do so before we can be discharged.
So the orders were to walk every 2 hours and do her breathing exercises as much as possible...and we did exactly that. By 6:30pm this evening my Rachel had walked 14 laps, done her incentive inspirometer countless times, and coughed up an impressive amount of junk throughout the day. And now that she's receiving the correct dosages of her pain meds, her pain is much more under control. It still hurts when she coughs, but it's not the constant pain she was having yesterday.
This afternoon a home care coordinator called me to talk about the plan for sending us home. She told me that she is talking with Brian to nail down all of the specifics, but that they'd like to send us home tomorrow at 11! Let's pray that that still happens.
Below are three pictures of Rachel’s old and new lungs:
These are the two sets of lungs side by side. The new one’s are on the left, and the old ones are on the right (The X-ray of the new one’s was taken from farther away, they’re not actually smaller).
These are Rachel’s old lungs. The stuff that looks like fog inside her lungs is called “infiltrates.” It’s mucus, dust, and other stuff trapped in her old lungs because of the thickness of mucus associated with CF.
And these are Rachel’s gorgeous new lungs. Open, free of junk and scar tissue, and ready to give my baby a better life.
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