Wednesday, June 30, 2010

The surgery.

LONGEST DAY ON EARTH!!!!!!!! So all went well even if we had to keep Jer from eating or drinking which the eating wasn't hard but drinking on the other hand not so easy. It started when we woke him to get in the car which wasn't early. Last meal was at 1:00 am pediasure in a bottle. So we left him to sleep and sleep until 10:00 am. Which amazingly he did. But this morning he wants food so we are driving in car listening to begging for a drink or alternating for food for at least an hour. Finally he fell asleep. We arrive, water fountains the decorative kind are outside the hospital, he wants to drink the water out of them. Drinking faucet passed in hall he trys to crawl out of arms to get. Registering, he says he has to go potty, no go, but he tries to get to tap to get drink. He pouts while playing with toys.
He sees backpack and knows that I always carry water or pediasure. I have to put it up high and try again to divert his attention playing. Finally we get into the change room and dang there is another sink and Daddy (who thanks goodness got to come with me) does diverting while I sign more papers.
Anther toy waiting room, potty guise again. Fight that he needs water out of tap. This is getting so so so hard to keep him from crying and fighting to get the water. On any other day he could go forever without water but of course not today. I never thought I would be in the mode to say thank goodness he got into the surgery because he was so set on getting any possible water that he could. After two hours they call and they need me to hold the screaming baby who came up out of the anaesthesia wanting you guessed it WATER.
I do not think I have ever seen him drink it that fast. Everyone was scared he would puke after guzzling it that fast, but no he begged for more. And can you believe this the non eating guy downed a bowl of soft rice and butter. A cup worth it, was so fast we had to slow him on his intake followed by vanilla yogurt the whole entire cup, add 4 little hospital size apple juices and at 12 midnight he was like a pack rat holding on to the other yogurt cup insisting that he was going to eat it even though he was so so asleep. Maybe the trick is to starve him more often hmmm lets see how the morning pans out in the eating category, breakfast is not ever a favorite meal on his part.
It was a good thing that they revised his trach hole because they found that scar tissue was holding to the inside of his vocal cords and that got released so now maybe we will have stopped the possible throwing up that has plagued him at times. Only time will tell if that becomes the needed fix.

He has the cutest little white teeth now and the one that was curved because the ventilator tubing rested on the bud area and molded it's growth roots area and made the tooth formed in a upwards curve at the bottom of the tooth is all straight now. All the brown yucky spots are gone. Supposedly, which is not confirmed the Echo reviled no pulmonary hypertension but that is very unofficial as of right now.

Did he eat all that food that he is so nicely buttering NOPE not a thing. He did drink the apple juice and late that night a vanilla pediasure. Hey the nurse said "do I sense a white theme going on with the food category". White rice, white yogurt, he likes white pancakes usually, white bananas once in a while, white pediasure, white milk, white cheese sticks, chicken nuggets that have white insides, white insides on apples, I think I am going to have to pay attention to all this colorless foods he will try.

1 comment:

  1. It could be that his body metablolizes those kind of carbohydrates more easily. My sister's body (she has Leigh's disease) doesn't know what to do with food. It cannot break down regular food unto usable components.

    You do what works. :) So sorry I've been MIA