Yesterday went so well that I was sure we were on our way to a smooth recovery. However, that changed as the night progressed. Unfortunately, it was determined around 10:30 p.m. last night that Alexandra’s IV would not hold through her next round of IV meds, so it needed to be changed. The first IV tech who came in tried twice and lost the vein, but a second one got it her first try. Naturally, Alexandra was very upset about both of them! After that, she just couldn’t go to sleep and seemed to be in discomfort even though she was on Tylenol and Ibuprofen (spaced out appropriately) throughout the night.
Since she didn’t get sleep, which was further compounded by the fact that her tummy was extremely bloated, she had a tough day. It’s so frustrating because you get one thing under control only to have something else go wrong. You give her pain medicine which constipates her only to give her more pain. You give her more fluids to keep her intake up while at the same time you are draining tremendous amounts of fluid out of her (we’re up to 930 cc’s now from the left side!). It’s just a vicious cycle, and it can really wear you down.
We were able to get her up and around on wagon rides a few times today and into the playroom a couple of times. While we can’t get her to actually stand much less walk at this point, it’s good for her to at least be upright. The more we can do this, the better it will be for fluid removal. However, they just can’t seem to get her comfort level where it needs to be for her to take that step. The best part of the day came late when she finally had a huge diaper. That seemed to take care of some of the bloating, and she ate a good dinner.
While I am cautiously optimistic, I believe that if we can keep ahead of her pain and keep the messy diapers coming, we can get her more active which, in turn, will help the fluid and get us out of here!