The roller coaster continues

Well apparently draining probably over two liters of bile out of your body helps you feel better. That plus an increased dose of fentanyl continuous rate, constant button pushes and all her other pain meds finally gave us a good half of a day with a peaceful Laila. She even asked for her iPad which is the most she has talked in the last 19 days.

I titled this roller coaster because unfortunately we have had glimpses like this before and things can turn on a dime. I don’t want to be negative or not give God glory for giving us those few hours of good but I’m also hesitant to say we’re on the right track. She’s on several pain meds, she has four tubes draining different parts of her body, her cough is worse (hopefully from the NG tube), she is still only getting TPN, and we still do not have a good plan of how to get her out of here.

Positive things are that the drainage is finally looking less like bile and more like mucus. You’re welcome for the morning mental image. She was awake more yesterday without pain (with lots of meds). There has been a big fight of balance between needing to ease her pain but needing her to be awake enough to cough and also move around to get her bowels working. I even got a little giggle from her yesterday as I pretended to throw one of my famous leg fits for her ;). Her urine output is good and the Monti seems to be working nicely.

The plan is to watch Charlie Brown for stool and gas output before trying to feed her again. Oh wait, does that sound exactly like the plan the last two times we fed her?? Oh yes it does and neither of those times did it work. I went round and round with the surgeon yesterday morning about that. But I don’t have a better plan and neither does he. I kept repeating “but that’s what we did the last two times and it didn’t work” and he just kept saying he has more experience than me and he thinks it will eventually work. I just hope eventually doesn’t eventually lead to them puting her small intestine through so much trauma that we have something more serious happen. My plan is to stick with this one doctor’s opinion of her abdomen and scans and not let anyone else change things on a day he isn’t here. Even within their own practice they contradict each other and say the other one was wrong. He told me yesterday that he thinks they fed her too soon over the weekend so I told him how they manipulated that over the ONE NIGHT I was gone to get some rest at the Ronald McDonald house. Ok anyway, I’m getting too lengthy and worked up here….

So bottom line today is the dreaded wait and see plan for awhile…. My favorite (insert sarcasm). Praise God with me for the glimpses of my real girl that I got yesterday but also please do not think she is all better and that we are out of the woods because we’re still out in the dessert waiting to find that path through the woods.

Psalm 27:14. Wait for the Lord. Be strong, take heart, and wait for the Lord.

Make it a great day! Praise God for being outside and sitting on your own couch and hugging and kissing all of our kids under one roof. Do me a favor and don’t take those things for granted today.