First of all I want to thank eveyone who has posted messages. I really enjoy reading them!
On Friday night Ali got to try life without a feeding tube for the first time. She loved it but the tube had to go back in. The hope was that without the NG tube she would be able to suck and swallow more effectively but unfortunately she wasn’t able to.
Yesterday was a good day for Ali. She was a little agitated on and off but overall she seemed to be comfortable. She was pretty sleepy but she had some times where she was awake and alert and she was looking around and trying to hold her head up. We’ve noticed over the past couple of days that her tone is improving which is a pretty good indication that the Digoxin levels are coming down and that she is starting to feel better.
Same thing today so far. She is a little agitated at times but generally she is just cuddling and sleeping comfortably.
Ali got a calorie increase in her tube feed yesterday so that could account for the agitation but she seems to be tolerating it well and I am happy to report that I haven’t been puked on in almost 48 hours! That is definetely a step in the right direction for us!!!!
Today we had some excitement. Ali got moved to an isolation room because she may have a cold. She has been coughing and sneezing a bit and she’s been pretty congested. So now we’ll have a private room for a few days…who can complain about that?????
Tonight, as we usually do we waited for the night nurse to start her shift before we left the hospital. I like to check with the night nurse before leaving because I want to know who is taking care of Ali and whether or not it’s someone that I really, really trust before I leave for the night.
The nurse tonight is a great lady who is wonderful with Ali. She really knows Ali and I think that Ali really likes her. When we were leaving she told us that she actually takes her breaks in Ali’s room and either holds her or just sits next to her and reads her book. Apparently there’s another nurse that does this too! She said that they come in and play with her at night and they try to get her to look at them and respond to her name. She ended the conversation by saying that Ali isn’t just a little baby now, she’s one of their favourites! That really made me feel good knowing that my little girl has people to love her even when I’m not around!
So I can sleep well tonight knowing that my girl is well cared for and safe!