We’ve had a few ups and downs, yesterday was definitely a down. Now those days that just seemed average have a new baseline to compare against . . . and they can now join the ups! I guess that’s means we will get to have more ups than downs now.
Gianni came to LPCH for her regular Thursday clinic and before we knew it (+/- a few hours for all the administrative goodies) she had been admitted for a fever while neutrapenic. The rule of thumb is a minimum 72 hour stay, however in her case it will be 4 – 6 days before her counts are high enough to go home. Bummer.
But the worst/good news was her weight has dropped to the point where her doctors ordered an NG tube for administration of nutrition. For all of us laypeople, that’s a feeding tube or nasogastric tube. Big Bummer (sort of). The tube is inserted through her nose and feed to her stomach. The “worst” part of the good news is that putting it in was traumatic. I have a theory, however, that part of the trauma is intended just so that the recipient is incentivized to not remove it – because removing it would just entail putting the tube in again, and from the looks of things that is not a pleasant prospect. It took about 2 hours for her to become accustomed to the intrusion, but to be honest she has been mad at us ever since. She will have to keep the tube until she can maintain weight gain on her own; potentially several months. I still see her strong, fighting spirit as a good thing – she is drawing on something inside of her that is bigger than all of us and I think it will serve her well throughout this long marathon.
There are benefits that outweigh the dread I felt about putting in the NG. To me it seems that eating, and her choice of foods was one of the last bastions of control that she might have had; but because she has her father’s strength of character and complete welter weight fight in her, it seems that to get her healthy and fat again we’ve got to do things this way. So, now for the “good” part of the worst news: 1) Food will no longer be a battle, we can go back to our usual (healthier) diet and she can just eat for pleasure, whenever she feels like it (I can stop chasing her around the house with a spoon and every imaginable kid treat on the market); 2) No battle over meds. The twice a day test of wills has become increasingly difficult – now we just put the meds in a tube, she won’t even have to know they were administered.
They doctors and nurses are taking good care of her. She will get to visit with Bruno tomorrow. I think she is feeling better than yesterday and that is a good trend.
