With three bolus feeds during the day in addition to the overnight continuous feeds, Alan didn't have much to eat by mouth yesterday, and has had virtually nothing today. He tasted some bacon, had a crunchie, and decided he liked chewing on the diaper cream tube. I was going to discuss the possibility of reducing the bolus feeds so he would get hungry enough to eat with Doc P today, but when we weighed him last night, Alan had gone down from 9.1 kg to 9.0 kg. He's losing weight even with food being piped directly to him.
This morning Doc P and I talked about all the conflicting needs for Alan - he needs to have his nutrition up for the big chemotherapy treatment on Monday, he needs to continue to eat by mouth, we can't keep the NG tube in too long or it becomes a risk for sinus infection. Right now getting his strength up to deal with the next of chemo is the highest priority and we'll have to juggle all the others as best we can.
Auntie Janet and Uncle Peter had both called to tell about Gung Gung's experience in the hospital with an NG tube. The Ensure was so rich and the tube so irritating that he didn't want to eat. Of course, they weren't going to take the tube out while he wasn't eating. Catch 22. Some other parents on the PED-ONC mailing list had responded saying how great the G-tube was, especially compared to dealing with an NG tube. It may end up being the better option.
With that in mind, we're getting out of the hospital today. They'll be sending us home with the equipment and supplies to do the NG tube feeding at home. Now that his blood tests are normal again (no more high potassium or calcium) and he's no longer dehydrated, the only left is the nutrition. They'll teach us how to take care of that at home, so there's nothing left to keep us at the hospital. It will be nice to be home again!
When I was researching about the g-tube, I've come across many mothers who loved having it. I think it's us, as mothers, who are still on the fence, are more worried about this surgery. Afterall, it is a surgery, though a minor one. When Logan was a month old, I opted going home with an ng tube instead of the g-tube, hoping he would nibble enough himself and to prevent a surgery. However, when feeding becomes a problem, I think the g-tube might be a good option. Alan can have his face back, no more tube down his throat, no more tape on his face, and the g-tube can be taken out when it's not needed. Not a bad option, though it's still a hard one to make. Take your time and think about it.
ReplyDeleteSpeaking of which, I am trying to get rid of Logan's old ng tubes but it's pretty narrow. I.D. 1.5 mm - O.D. 2.5 mm, 50cm long, size 08 Fr. If you can use them, I can mail them to you. I have a box of 30ml and some 60ml syringes as well. Let me know!