Yesterday Little T's GI doctor talked seriously about removing Little T"s feeding tube aka g-tube in three months.   His g-tube is responsible for all his ER visits in the past year.  Little T hates the thing and wants to be rid of it.  With the pump, he has accidents about once every two weeks where we miscalculate the amount his stomach can hold.  The result is traumatic for him and very messy. 

So about three weeks ago we switched to feeding him his supplement of 355 calories of gloopy liquid) via mouth.  We have so far managed to bribe him into drinking it every night.  He seems to be forgetting the pump trauma - good, but bad in that his appetite is slowly picking up, but is still not quite up to meeting his caloric needs to grow.

His GI doctor says Little T needs to get through a cold and not need the g-tube.  I have no idea if this is possible.

Right now Little T is growing, but he has little fat reserves.   He will eat food if I offer it to him, but most days it is a struggle to get him to eat enough.  His dietician's rough swag yesterday was that he was in fact eating under his caloric needs on two in-between days. 

I'm consciously trying to be less anxious about Little T's feeding. I realized that I was trying to make C feel the same level of anxiety as me. Of course if you're a parent you know this never works. And I realize that part of my anxiety is hormonal.

Last night we weighed Little T and he maintained the same weight despite the fact that last Monday we dropped his feeding by 30 calories and for 3 feedings this week he pulled the tube and didn't get his entire dosage. I am really very pleasantly surprised.

In the past few weeks he's started eating breakfast almost everyday and saying "I'm hungry." I haven't really acknowledged how he is a)increasing his total calories and b)recognizing hunger feelings. B is really really important to get off the tube.

I'm working on just offering him the most high calorie (and of course nutritious) food in a low key way. And trying remaining calm when he says "no". Like last night he only took one bite of C's salmon burger. Then later he asked for food and ate a 1/4 of a salmon burger on his own. His favorite food is "burger fries" though usually it's a beef burger. We go out and have one about once a week.

We've had a very difficult week and so I'm really happy that he maintained his weight despite all the stress and challenges to his caloric intake.

We switched to Resource 1.5 for Little T's feeding pump.  So far so good after three nights.  Little T will even drink the stuff from the little juice box it comes in.  Prayer to the feeding/emesis gods here.  I'd appreciate any good vibes that it keeps going well.

It's really great for C not to mix formula every night and to know the entire process will finish by 12:30 if all goes well.  And even if there are screwups with kinks in the line the latest has been 1am because the volume delivered is so much less.  

I've already noticed some changes in C and Little T.  C no comment.  Little T put on .2lb from a week ago.  His highest gain since last month when we bought an accurate scale and started weighing him at home every week.  Hooray!

I made a wiki page about Little T's GI issues.  Cos there's a lot to keep track of.  But the simple incomplete answer is that cutting Little T to 500 calories via g-tube (scarily still half of his daily calories) has been hard on him.  He's thin and lost weight and is only slowly regaining the weight he lost.

He needs enough calories dumped into at night, and it needs to be done before 1am, or he doesn't eat breakfast.  The fastest he can tolerate is 300ml/hr and he needs a break of about 3 hours between feeds.  Right now we're doing 2 feedings of 250 ml.  Problem is that we're at the edge of fault tolerance.  Any mistakes and he either doesn't get enough calories or the pump runs too late. 

So we're probably going to switch to Resource 1.5 (a higher calorie version of Pediasure) after 2.5 years of mixing formula.   This fills C and I both with anxiety.  Part of it is many nights of vomiting prolly due to chemo but it's a visceral memory.  And part of it is that feeding one's child is not a rational process for us...for most parents I think.  

Little T is growing! Little T is growing!  He is now 26.3 lb and 85.5cm.  Okay he's almost 2.5 years old, but he's growing.  At our GI apt on Monday, we decided to start weaning him off the pump.  Cut it 20% to 500 calories.  We can also stick with formula. 

I had to ask about Pediasure.  We got a free sample.  Little T loved it.  I hated the smell, particularly after he spilled it all over himself.  OTOH I used to hate the smell of formula too.

Little T is eating more.  We need to wait a week to see if his eating will make up for the lost 100 calories.We'll measure him on Monday to see if he's still gaining weight.

My theory is he needs real food to grow.  The pump just give him enough to stay alive.  I know lots of heart patient kids grow on pumps.  However Little T's problem is his digestive system was destroyed by drugs.  So as his digestive system heals, he can eat more real food.

Last night we went to a lovely party and my friend Tamara performed a feeding miracle with src's turkey chili.

Little T ate at least 30 kidney beans. He's never eaten that much in an entire day before! Tamara put each kidney bean on a spoon. He took the kidney bean between his finger and forefinger, put it in his mouth, chewed and swallowed it like a normal person. I was so shocked and amazed and happy.

He will sit and eat for fifteen minutes. But normally eating one tiny toddler bite of food literally consists of a one-minute inspection. It's a combination of a fine food taster, a royal food tester for poison, and toddler food masher. He twists and turns his morsel of food inspecting it from every angle. His eyes squint suspiciously. If the food fails some part of his test, he throws it on the floor. Next he delicately touches the food to his lips. Then he inspects it again and puts it whole in his mouth. He spits it out and inspects again. Then he chews it once, carefully extracts it from his mouth, and inspects again. It takes a very long time to eat a piece of food if you can only handle tiny pieces and take out the pieces between each bite. Therefore in fifteen minutes of eating he manages to eat only one to two tablespoons of food.

A couple days ago he ate half a sausage and we were also amazed. I think switching to Prilosec is really helping. Or his GI system is finally healing from the chemo and steroids. Or Tamara really is a miracle worker. But I hope for Little T's sake that he doesn't need Tamara to eat properly, because she lives in Vancouver.

I feel bad. Have cold. Stuffed head. Sore throat. Guess it started yesterday. Judging by how many errors I made in my entry yesterday which I edited. Admittedly I typed it while Little T was on my lap. Right now the house is quiet. I can think a little. Little T's feeding still looms large, but I no longer blame myself about it. It's not my fault. But I need to make it better. Right now it takes too long. Ten hours. He tosses and turns and tangles up the pumping tube wires. The pump beeps "Flow blocked" at least once a night. Often at 1 in the morning. Or if we're unlucky 2 or 3 or even 4. Multiple times. Sometimes we don't hear the pump and we have to stay up to give up a catch up bolus.

Little T naps 3, 4 sometimes even 6 hours during the day. I thought the tumor tired him out, but maybe he doesn't sleep well with the pump.

My thought last night was to cut the time of the feed to four hours. So if we start at 9, it goes until 1 in the morning. A late night for we parents, we stay up that late sometimes anyway. And it avoids the stumbling around during the wee hours when things go wrong. He needs 600ml total. Right now he tolerates 65ml/hr 300ml bolus for 1/2 hour when asleep. Somehow we have to work out a system that will work. Maybe 300ml/hr bolus for 1/2 hour then work up to 130ml/hr for the other 3.5 hours. I think if we increment the feeds by 10ml each night... It feels like a long way to 130ml, but it's a week if all goes well. IF all goes well

Sorry to be so quiet. Kite flying was excellent. The winds picked up our kite and it flew high with little effort. In fact Special K was a little disappointed, because she kept wanting it to crash. Little T has been cleared for limited contact with people and we figure that meant Mother Nature. So he scooted about on the dirt with great joy. He kept trying to head for the puddles. I stood in front of them. He was too delighed with his new found freedom to care much. He flung rocks at the fence. Best game ever! I'd forgotten what joy Special K took in such simple things.

On Monday I crashed to earth. We went to his Gastroentrology appointment. Always disappointing. He never eats enough. Never grows at all. Never gains enough weight. I've written a lot about that before. What I haven't been writing about. At least not much, because it's utterly gross and grim to face...every morning he vomits. And I mean vomit, not baby spit up, but full-on retching that involves his entire body. What a horrible way to start your day!

His doctor prescribed Reglan. His food sits in his stomach from night until morning instead of being digested. You can imagine how we know this. Reglan works great except there's a small risk of side effects that it can cause neurological problems like loss of balance. Let's hope that in this, Little T is not the exception.

We also received the full bill of repairs for my house in Oakland. Very sad for me. I've gotten over thinking it's my fault, but it still makes me sad. And I needed to escape for a while, so I played lots of World of Warcraft when I had computer time.

Little T's platelets went down to 176, but continue to be normal as does his fibrinogen. His tumor continues to shrink. His MRA confirms it's shrinking. The process seems to exhaust poor Little T, because he'll take 7 hour naps then sleep through the night.