NG (Dad)

After a lot of thought and discussion we have decide that it best to put Nevans NG (nose tube) back in. We have been monitoring his weight and nutrition for the past few weeks. He has lost 4 pounds since it was accidentally thrown up a month ago. We have tried to get him to eat but because of the chemo his taste buds aren't quite what they used to be.

Yes thrown up! I guess I should go back. Just after Halloween Mommy went out for a girls night. I was left in charge;)  I decided to make a fun dinner to make the night go well. Garlic bread seemed like a good idea. Bread, butter, garlic, cheese, simple. Perhaps I used too much garlic powder.While brushing his teeth Nevans stomach turned and then up came the garlic bread along with his nose tube. Tears and pain followed by an overwhelming sense of relief. He thus ran a fever that almost forced us to take him to the hospital for a 2 day stay. It broke the next day. I haven't been allowed to cook since;)

After a long discussion in the morning Nevan agreed to try and take his meds orally. Until now he has been doing a great job with minimal coercion and bribing. However the meds are no longer the issue. Nevan will eventually catch a flu bug. As of right now he doesn't have any extra body fat to deal with the dehydration it will bring. Also in order for the chemo to be as effective as it is prescribed to be he must have good nutrition. The chemo is slowly deteriorating his taste buds and thus makes him very fussy. We are trying our best to increase selection but even still hes just not interested. We were warned of this. So we have decided to have his NG tube returned until a few days before Christmas. This will allow his face to recover from the tape before we take pictures during the holidays. The Turkeys are being fattened for Christmas and so is our little monkey.

I took him yesterday to clinic and requested the tube be put in. I was suppose to be at work but Anita came down with a cold bug or something worse. It is not acceptable to have anyone visit the clinic who feels ill. Obviously we agree.

It was not an easy day. It was his week one Thursday. 1 finger poke,  1 leg needle, 1 chest port access, and his steroids start again. He didn't have much warning. It wasn't fair but telling him ahead of time gets him too worked up. I told him he was going to get the nose tube just before we started the treatment. I should have waited. It just made everything worse. He screamed through everything. I couldn't say or do anything. Everyone tried to talk him through it. Me, the nurses, even the social worker Nancy and her cool toys cant distract him. I hold him down once again, body and head and we all work together to get it over with. He screams out that he will be a good boy and eat his food. Everyone jumps to reassure him its not his fault. Once again everyone in tears..... The nurses are reminded its not just a job they do......Nevan has that affect.
Once its in he talks to us about it and makes his usual demands. Water please. Tape it. Hes very precise and has a routine. So proud of him as always. Now we are making a solid effort to fill him all day and make this traumatic procedure worth it.