I did not post yesterday, as not much had changed from Friday. Unfortunately, today was not much different either. Alexandra’s chest x-rays still look pretty much the same, and we are still working to get her sodium and potassium levels up. They did clean and change the dressing around her chest tube today, which required a small dose of sedative. The sedative made her very silly, so we had a nice stretch of time enjoying Alexandra singing every song she knows at the top of her lungs as we took her for a wagon ride.
Yesterday and today both, we took a little extra time for dinner at Ronald McDonald House and even layed down for a little while yesterday before dinner. It felt wonderful for me to lay in an actual bed even if it was for just a very short time! Today we went for a nice brunch outside of the hospital at a little restaurant we found when we were here over two years ago. It was as nice as we had remembered and provided a nice respite from the hospital cafeteria!
One thing that is hard to do during a hospital stay like this but so very important is making a little time for just you and your spouse. It’s so easy to get caught up in everything going on with your child that you simply forget to carve out any time for each other. However, that hour or two spent one-on-one will revive you and your relationship so you can come back to the hospital refreshed and deal with whatever comes. For us, we came back to find Alexandra’s heart rate was up over 30 points. We always check the monitor in the hallway to figure out if she is sleeping before going into her room. Based on the heart rate, we went running, as we thought she must have been distressed about something only to be surprised by her sleeping. Naturally, that made us even more concerned. The doctor checked her and could not determine exactly what happened to make her heart rate jump but attributed it to coming down from the sedative. After another hour or so, it came back down, but they are continuing to monitor it to make sure that doesn’t happen again.
Overall, it was a good weekend with Alexandra staying stable for the most part, and the two of us being able to have a little time for ourselves.