June 1 – Alexandra continued to be uncomfortable until around 1:30 a.m. at which time they upped her dose of pain medication and added ibuprofen. Since then, she has slept most of the time with only a few moments here and there being awake. We need to make sure she is taking in enough fluids; however, as you can imagine, that’s not easy when she’s sleeping most of the time. On the other hand, they don’t want to increase her fluids too much by IV, as that could result in more fluid around the lungs. It’s a very delicate balance of input versus output.
Unfortunately, her chest x-ray this morning did not show any change from yesterday, but I guess the good news is that it was not worse either! The only situation that became worse over the day is her sodium levels have continued to drop. I wasn’t terribly concerned about that until they told us that if they got too low that she could have seizures. They now have her on sodium supplements, which we hope will greatly improve her levels.
Our CarePages updates throughout the past several days have generated so many wonderful, uplifting messages from our friends and family. If you don’t know about CarePages or a similar site, I have to tell you it is a terrific way to keep everyone you know updated on your child’s progress by posting one message and not having to make numerous phone calls to repeat the same information over and over again.
Our ICU nurse tonight insisted we take our time coming back after dinner. So, we went over to Ronald McDonald House and had time to go through a package of mail from home before dinner. After eating dinner, I took the opportunity to work out on the treadmill for a little while and then took a long shower. You can never underestimate the power of a little exercise and a nice hot shower to make you feel like a different person!
I’m hopeful that Alexandra will still sleep through the night so I can get a little more sleep and that tomorrow is a good day with lots of progress!