There is something quite amazing about having a perfectly normal day at home. I guess it takes something like esthesioneuroblastoma to really appreciate a "normal" day.
I woke up this morning quite agitated and found that the more laundry I did, the better I felt. Brendan, too, was quite concerned-- mostly about the parting comments made by the doctor after radiation yesterday. The doctor told us that Brendan's weight was already on the low side so he would probably need a feeding tube inserted before radiation was over.
Yikes! That was not what we wanted to hear right before leaving for the weekend. Brendan especially did not want to hear anything that sounded like getting another tube in his body (even if he got another bead for it) or anything close to another surgery. And the thought of having to eat just to eat -- now makes everything hard to eat. Brendan's smell is still affected from the brain surgery, and he tastes things differently after the neck dissection. Textures play a big part in how he likes food so it is a daily guessing game on what he even feels like he could possibly want to eat. Nausea has plagued him all week, too, so fighting with his stomach is a constant battle. It's hard to eat when everything that goes down wants to come back up. And we haven't even started chemo yet. . .
So it was nice to get away from doctors and hospitals and radiation machines and just enjoy normal for a day or two.
Tell Brendan all three of our grandchildren with cf have feeding tubes. They didn't want them but they have really been a blessing. It takes the worry and pressure out of having to eat and they get enough calories while they sleep. That surgery is nothing compared to what he has been through. So happy you are home this weekend. Laundry is therapeutic.
ReplyDeleteThe feeding tube is actually a relief. Less pressure to eat so much, especially when you have so little appetite, and somehow less nasea - maybe that's a dehydration thing. Kathy's right, it is a blessing, for Brendan and his parents (less stress for mom and dad and all the calorie counting)
ReplyDeleteThat was from Brooke Hansen ;)
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