Sunday, October 31, 2010

Cystinosis Research Foundation 2009 Video

Sunday, October 17, 2010

Toothbrush



Sam loves brushing his teeth. He actually cries if you take away his toothbrush before he's done with it. This photo is from before his G-tube, so he's a little slimmer, but look at that killer grin!

Sunday, October 10, 2010

Sam Meets Hank

On Friday we had the pleasure of a visit from the Sturgis family. Brian and Tricia Sturgis are from Sandpoint, Idaho, and they have a four-year-old, Henry, who also has cystinosis. Ashton got in touch with them by e-mail, and they let us know they were going to be in Utah this weekend visiting some friends. We were stoked to have them over, especially to meet another family who has gone through and is going through the same situation. It was also exciting to see that Sam can still turn out to be a pretty normal kid.



They brought Sam a stuffed lion named Roarbert, which he loves. Sam and Henry took to each other like long lost brothers, and they played all night long. It was great to ask the Sturgis family questions about their experiences, and they gave us very encouraging advice. Even though we were complete strangers when they came, we felt a strong kinship with them before they left. Sam can't wait to see Henry again!



We also purchased a scale over the weekend so we can weigh Sam more often. For some reason he really likes sitting in the scale, and he gets mad if you try to take him out. This week he weighed in at 16 lbs 7 oz. I think most of the weight is going to his face.

Tuesday, October 5, 2010

Ten

That's how many ounces Sam has gained since he's been on the G-tube. It's working! As you can see, Sam's pretty excited. Or he just likes green cups.

video

He had a great streak of about six days without throwing up, which unfortunately ended today, but he's been doing a lot better. Bring on the Michelin Man!

Friday, October 1, 2010

G-tube



Sorry we're slow posting anything on this. Last Tuesday, the 21st, Sam had a gastric feeding tube put in so that we can get more food in him. While his curiosity for food is increasing, he's still very picky and doesn't have much of an appetite. In order to gain weight he needs about 3 cans of Boost formula (Kids Essentials 1.5) a day, and on a good day he'll drink one and a half. The feeding tube will help him get the calories he needs, and it's a nice way to give him his medicine without making him gag or destroying his teeth.



Here's Sam in pre-op. He couldn't have anything to drink after 7:30 a.m., and his surgery didn't happen till 11:30 a.m., so he got pretty cranky. They gave him a fluid bolus through an IV, which helped a little, but he didn't really calm down till the anesthesiologist gave him versed. Then he became disturbingly complacent and his eyes eerily vacant.

The surgery went very well, although it was an hour and a half longer that planned because Dr. Rollins found two inguinal hernias while he was in there. The hernias weren't a problem for now, but he said they could cause problems down the line, so he fixed those up while Sam was still under.



Recovery was not fun. They wouldn't let Sam have anything by mouth because they wanted to prevent the newly placed G-tube from moving too much. Sam has to have water all the time though, so he was pretty miserable Tuesday night. It didn't matter how much painkiller they gave him, he just wanted water. He cried for several hours and finally they called in a surgery resident, who said to give him what he wanted. They unplugged his G-tube and let him drink to his heart's content, about a liter in all, and it all just drained out of his tube. He finally calmed down and went to sleep. One of the problems was that his IV was for a normal baby his size, but Sam gets dehydrated very quickly, and it took a lot of complaining to get the doctors to up his fluid dose. Once he had an appropriate IV drip going he was pretty content, although he wanted to be held all the time.



We thought we'd be leaving by Thursday, but Sam threw up a lot of his feeds, and they wanted him at full capacity before they discharged us. Sam's poor little stomach just couldn't handle it, and by Sunday they realized that there was nothing the hospital could really do, and that we'd have to work with him to build up to the full feeds. They gave him erythromycin to help with gastric motility, but so far that hasn't seemed to help much.

Since he's been home he's done a lot better. He still throws up some, and we often have to vent gas bubbles out of his tube, but he's a happy kid and is moving around again at full speed. He still has a hard time at night, and we usually turn the feeding pump off from 1:30 a.m. to 7:30 a.m., just to give him a break.

Thanks to all the awesome friends and family who came and visited Sam in the hospital, and who helped give Ashton a break! And thanks for all the meals and presents for Sam! It's a good thing people like this kid.