Sunday, June 29, 2008

Quinns latest medical stuff

To set the table for this update, it should be understood that Quinn has days when the surgical repair site in his throat will swell up and prevent him from eating. When this happens, he will take a bite of food, and his swallowing ability won't push the food all the way down to his stomach. He immediately starts wheezing, and in the following moments he will throw up what ever he just ate. The hard part for the parents is that he will still want food no matter how much he pukes, because he's still hungry. And we have to tell him no even though we know he must be starving. On a bad day, he will throw up all day and not hold down so much as a single spoonful of food. On these types of days the routine is that he will go to sleep hungry and the following morning he eats like a little horse.
Well last week, after two days, he was still tossing after every bite and every sip of water, so we took him to the emergency room. He was still playful and interactive, but he had lost over a pound and was looking thin. We were back in Providence at Hasbro children's hospital. Very familiar place to Quinn. Same smell, same IV team dilemmas, and same doctor too. Quinn's last year pic next to this one from two days ago:


Last year he new no fear. This year, he knows all the precursors to pain. He's still a hard stick with his well hidden veins. So three attempts for the first IV. Quinn underwent a procedure to dilate his throat using an inflatable device that inserts into the site where the stricture is and stretches it out. He is put all the way under for this procedure, and is probably not feeling like a million bucks when he awakes. But given a few minutes he's good for a smile. Awesome.


If you've ever wondered how some people find joy in life at every opportunity, watch a small child that isn't tired. They'll show you all there is to know. Quinn was admitted on a Wednesday night and stayed through to Friday evening. I was still working and Steph stayed at the hospital with him round the clock. So we were some tired parents.

Visits from both Quinn's grandmothers helped.

video
Keeping Quinn entertained while he's strapped to an IV device was another challenge. Kids hate to sit still. The hospital had these little cars to get the kids out of the room for a break.

Anytime Quinn wanted to run around, one of us had to chase behind him carrying his IV fluid and pump. Quinn never had a thought that of he ran too far and his Needle came out, he would need to be stuck again. Although, once they used his foot for an IV site, he could only sit.

A question for anyone reading this. Would you prefer to be the one holding your kid down during some terrible experience or would you rather some medical staff member handle the matter? After his throat was dilated the doctor wanted to see Quinn's digestive system function under x-ray equipment. He must be held down, and force fed this radioactive fluid so that the image of his digestive system can be displayed. This was the strongest I've felt Quinn fight me.



The whole time I'm wondering how he'll ever forgive me. He was pinned down by dad, crying his eyes out, while mom was forcing him to choke down a whole bottle of this white plastery looking crap. He managed to get one arm free during the ordeal and was able to give dad a few slaps to the face. Not much you can say to comfort him.

When the test was done, I took a good swig of the Barium fluid because I was dying to know what kind of misery we had induced on Quinn. The doctors description of the taste was that it had a new bubblegum flavor...I would say it was a mix of sugar water and chalk, and a maybe little mustard powder. Nasty.
The fluid was observed through his esophagus and his duodenum, both surgical repair sites. The flow path checked out with no signs of stricture. Within the day he was released to go back home where he has been eating and drinking like a hungry growing little boy.
Sorry the update took so long pop. He's doing great now. Hopefully I can get my small family into a house of our own soon. I'm trying to strike bargains on these outrageously priced homes. Wish me luck.
In other news my sister in Washington state has begun having contractions to give Quinn a third female cousin.....

Thursday, June 12, 2008

He Hates Ice Cream

Can't you tell how much he hates ice cream.

Seriously, I can't keep the kid way from it. Especially now that it's hot out.

What a face.

Ever wonder wonder what your face looks like as you are tripping. Well ...... here you go.

He also loves to read.

He can be having the worst day, but if you ask him to bring you a book, life is wonderful again.

Quinn loves to give kisses, he was kissing stitch all night. But he kept kissing him so quickly I couldn't get a picture of it.

Friday, June 06, 2008

Getting there

I know I've mentioned in previous posts that at one point Quinn got on the baby growth chart for height and for weight. I don't think that I ever mentioned that that didn't happen simultaneously and neither height or weight stayed on for more than a month. Well, at the last Dr. appointment we had a couple of days ago we found out that he is finally on the charts for both height and weight again. Go Quinn Go.



For the past several months Quinn has been having some trouble swallowing solids. We finally figured out that the surgical site Quinn has in his throat had started to constrict. So, about a month and a half ago we had an esophageal dilation done to open his throat a bit more. Everything went very well with the dilation, his swallowing has been better, and I think it really helped him to start growing more quickly. We are going back again the end of June for a second dilation. Hopefully after this round he'll be able to keep everything down and he can grow even more.

In other news, we are heading back to Boston Children's hospital the end of July for more stents and angioplasty. He's actually done really well considering the initial estimate we got was that we would be back when he was 12-18mths. By the time we go Quinn will be 20mths, so, I'll take it.


I guess every kid knows that this is the way you're really supposed to get up a slide.



I love him in a hat. Too bad he wears them for about a half a second and then takes them off.