Today was not my favorite day. It started out grumpy (on more than one account) and ended with tears (on more than one account).
Scarlett pulled her NG tube out again. It hasn't happened in a while, and really, she doesn't pull it. It just gets caught on something and, this time with tape wet from the bath, slipped right out. It's not painful, really. It is, however, frustrating because a tube out means we have to put a tube in.
We were out of tubes. We had to call the hospital, who then called the home pharmacy, who told me that we had them on order all along, and I should have just had them delivered. This was news to me after having the home pharmacy for almost 8 months; I have been going to the hospital clinic for new tubes all this time, when we could have had supplies delivered to us at home! We knew they had the formula bags for her nightly tube feeding. If we are organized (and that's a big "if"...) we can just call when we have a few NG pump bags left, and they will ship a new case directly to the house. Easy, if only we would remember to call before it was too late. This week, because we forgot to call, I went to the home pharmacy office and picked them up so that we wouldn't have to wait the 2-3 days for delivery. Since I had to go there again today and to the clinic tomorrow, that makes 3 trips across the bay for us this week. Luckily, they gave us a few extra tubes so we won't have to do this again any time soon.
So tonight, we had to put the tube in. Scarlett has not been eating well AT ALL (like, 3 ounces total all day today, and no solids except gnawing on a soggy graham cracker), so we HAD to put the tube in. Plus, since she is getting oral chemo, I am really worried about it sitting in her mouth...rotting her tiny new teeth or causing sores...so I am much more comfortable putting it through the tube. When the time came for cleaning up, getting on PJs and putting in the tube, our usually-mellow baby went through the roof. No apparent reason, just screaming.
Unfortunately, we had to get it over with. Chris tried to calm her down while I prepped all the supplies: tube, filled with water, marked at the correct length; thick tape to protect her skin; thin tape (one cut into a heart) to hold the tube in place; syringe of air and stethoscope to check placement at the end (push in air, listen for gurgle in stomach, then pull back some stomach juices to double check...blech). Chris pushes the tube in through her nose (instructions from the nurse: "when she gags, keep pushing"). I hold her down. We've done it many times, but it is never easy. She screams, gags and thrashes her body to try to get away.
After the tube was in place, I scooped her up and just tried to calm her back down. It is heartbreaking every single time. She does not understand why we would do something so awful to her. Her eyes search for us, looking for someone to help her, but we're the ones holding her down. Please, please, please don't let her remember this.
I rocked and rocked with her, and all I could think about was how uncertain things still are. It has been so unfair to her, all these procedures, medications, discomforts. Is everything we put her though - up to this point and in the months to come - going to work? Will we win this battle? Some days I don't doubt it, but other days...well, other days are not my favorite.