Another Rough Night

Rebekah didn't sleep well again last night. She was calling for mommy many times during the night. Her temperature is a little elevated (99.5) and mommy thinks that she is just not feeling really well. When asked if she hurts, she says no and when asked if her tummy is upset, she says no. It is unclear what doesn't feel well. Sarah was crying several times during the night, too. Needless to say, mommy is a little tired today. It has been a long time since she has had a good night's sleep (or even 6 hours straight).

We decided to take the taper down on morphine a little slower than recommended (with an OK from the doctor). She seems to be hurting a little before the next dose is due, so I didn't want to stretch out the next dose even farther. Maybe today we'll be able to stretch it out some. We'll see how she's doing later. One step at a time. Once we have her weaned from the pain medication, then we can start weaning from some of the other medications she is on.

Last night we started adding some nutrition back into her feeds, mixing them with the pedialyte. She seems to be tolerating it ok so far. No vomitting and it is running at a pretty good rate. I cut the rate back a little over night, but it is back up now. Throughout the day, I'll make it more and more concentrated and see how it goes.

Her counts yesterday were doing ok. They are still on their way down and haven't hit bottom, yet. No need for transfusions. Since she received Red Blood Friday night, we didn't expect to need Red Blood. She has been bruising a little bit more, so we weren't sure whether she might need Platelets. Her Platelet count was still pretty good (for her) and so she didn't need any this time.

On our way home from clinic yesterday, we stopped at the grocery store to pick up a few things. Rebekah made it pretty clear that she wanted several things to eat. She wanted melon and she wanted pretzels, in particular. So mommy bought a small container of mixed melon and two bags of pretzels. It is hard to turn her down, when she hasn't been eating much. She did eat some of the pretzels, but hasn't wanted me to give her any of the fruit (at least not yet).

Her vocabulary hasn't been great over the last day or so. I've noticed that she is not using many of her words and is grunting and pointing more. When pushed, she will use words, but she is preferring to grunt and point. She is coughing and continuing to drool, so her mouth and throat are probably sore. Hopefully, they will heal quickly and then we'll be back to normal (her normal these days anyway). Doc said that she sees a little bit of scarring inside Rebekah's mouth. Let's pray that heals, too.