Worn Out

We survived the Upper GI with a small bowel follow through today. We were up extra early today after having several interruptions during the night for poop clean up. This left us all a bit more tired and Maggie especially tired given the amount of crying she did today.

As far as the procedure is concerned, it was quite difficult on the both of us. It is very hard to not be able to soothe my crying child. And just to clarify, this isn't a mad crying, but a scared crying. Maggie knows the x-ray room all too well, unfortunately, and as soon as we entered the room she started crying. When told she would be drinking chocolate milk (they put nesquik in the barium) she was very excited, but then they made her drink it lying down with a huge machine over top of her. This didn't end up working, for obvious reasons, and she was forced to drink it with a syringe.

The procedure then had us waiting for 30 minutes to an hour at a time before they did the next x-ray. During this time I had to force her to drink the rest of the concoction with a syringe AND get her finger pricked for a lab draw to see what her electrolytes looked like. If someone had a bad day today, it was definitely Maggie. She had over 4 x-rays and we waited 3 hours and 25 minutes before the barium finally finished through the small bowel. They say normally it takes about 1-3 hours. We assumed Maggie would be fast considering how quickly food passes through her body, but nope, like I've said before, nothing is easy with us.

Maggie did very well considering, however, the rest of the day she was much more irritable and jumpy. I have noticed she trusts things much less than before (if you can believe that), she whimpered some in her sleep during her nap, and of course she is just as needy. I am pretty upset by the whole thing; forcing my child to drink something disgusting, forcing her to lay down on her belly while holding her down, forcing her to take medicine that tastes bad, forcing, forcing, forcing. I shouldn't have to do this and she shouldn't have to be going through this. Must I say again, it's not fair.

Our next GI adventure starts tomorrow during her scheduled appointment in Cincinnati. We will see what the plan is-- and there better be a plan. Maggie's diarrhea has gotten increasingly worse. Friday night I was up 8 times changing her diaper, Saturday 6 times, and last night 3 times. I guess you can say it's getting better, but last night's required a whole bedding change. These nightly changes are on top of going 4-8 times during the day. Something has made things worse for her and I'm not exactly sure what. We decided Saturday that maybe we would put it upon ourselves to try a gluten-free diet and see if that creates any change. I've been told it might take some time, which I guess is good since there has been no change.

But I guess on the bright side, Maggie's labs were not horrible today, surprisingly so. They did increase her new medicine a teaspoon because her bi-carb is still low at 18.6 (normal is 20 and above). This medicine however is very bad tasting and Maggie cannot get it down her without almost heaving. There's a lot of it too, 6 teaspoons 3 times a day. That is a lot for a little girl, on top of taking so many other types of medicine throughout the day. Maggie's potassium was 4.1, which was quite a shock given our weekend potty experiences. So, with the labs comes another finger prick on Thursday or Friday to see how she is doing. Another moment for me to force her to sit and endure pain.

On the bright side, we did get to go Trick-or-Treating on Saturday with Maggie's friend Jay. She was very quiet and shy, but she did manage to say "Tri" (for Trick-or-Treat) and "Tan" (for thank you) when we walked up to the houses. I ended up carrying her the whole time, which was quite a workout. My goal next year is to have Maggie walking on her own and to have her dressed in a new costume (which means that she will have gained weight and grown). She was once again a bumblebee, which she liked, but was not all too fond of the hat with antennae.

I will say that I have grown tired of people commenting on how tired she looks. Even after a nap she looks tired. That's what chemotherapy and steroids do to you, they make you look tired. I often feel when people say that, that they are judging me for having Maggie out when she should be at home in bed taking a nap. I just smile and say, "yep," but what I really want to say is, "She has cancer. There's a reason why she's tired." I look forward to the day that she feels good. I also look forward to the day that I don't have to correct people by telling them she's a girl (I guess girls can't have short hair). I know, I shouldn't worry about it, but after awhile, it just gets to me. That's kind of what this disease is doing to me...getting to me.