James brushing his teeth. sorry I don't no how to rotate.
And yes he finally got a job at HOT DOG ON A STICK, so now he can by his medicines, diapers and pay his Co-Pays at the Doctors.
Saturday, August 18, 2007
James, James and more James
James using his saftey glasses to pertect his head. He wore these for a good 1/2 hour until I busted out the camera!!! then he got mad in his cute little way.
James brushing his teeth. sorry I don't no how to rotate.
And yes he finally got a job at HOT DOG ON A STICK, so now he can by his medicines, diapers and pay his Co-Pays at the Doctors.
James brushing his teeth. sorry I don't no how to rotate. And yes he finally got a job at HOT DOG ON A STICK, so now he can by his medicines, diapers and pay his Co-Pays at the Doctors.
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4 comments:
What a handsome little man!
He is so cute!!! I love their little characters :)
Tracy...I put this response to you in the comment section of my blog but I thought I would copy and paste it here in case you missed it. Hope it helps!
Tracy,
Yes, we almost lost Eli post-fundo but it wasn't from the fundo specifically. He ended up with severe FTT and dropped down to 14lbs and 30" at 14.5 months (after being 16lbs 5oz and 28.25" long at 11.5 months on surgery day). We had dealt with FTT and large caloric needs for Eli prior to the fundo but recovery from the surgery in addition to the lung damage severity caused by his long-term aspiration threw him into a struggle to live. We were pumping 3,000 calories into him a day and he was continuing to lose weight. The GI, pulmo, and surgeon didn't have answers, genetics could find nothing wrong, endo didn't think it was their issue, and the muscle biopsy for mito revealed nothing. Finally around 18 months things started to turn around and Eli began to grow and thrive. He regained strength. For no reason at all.
The fundo was the best thing we could have done at the time for Eli. It truly saved his life then. His lungs were bad. We would hear him wheezing while he was upstairs napping. He was having a's and b's frequently and needing albuterol and steriods like they were water. Thickening didn't work, GJ tube feedings didn't work, NPO status didn't work. The fundo did. It was a long road with a lot of scars and recovery but Eli is a trooper.
The fundo isn't a "fix-all" however. You often trade one set of symptoms for another. Retching is very common in the beginning of recovery. Their stomachs can't take fast feeds or large feeds for awhile (if ever). We are lucky that Eli overcame this quickly. Eli does need vented daily still due to not being able to burp. We are looking at about 2-3 more years at least on his MIC-key button according to his surgeon and GI. Some kids never need vented and some need to use Farrel bags 24 hours a day. The symptoms vary greatly from kid to kid. The inability to vomit is scary. When Eli is sick with a GI virus we have to let him vomit out of his G-tube or take him to the hospital for anti-emetic meds like Zofran. The up side of a tube is being able to hydrate your sick kiddo an saving some dehydration trips to the ER.
Currently we are undergoing testing to see if Eli's fundo is allowing him to reflux at night. His respiratory status is getting worse again and his recent stent in the hospital with O2 needs has provoked a series of tests. If his respiratory status is worse d/t aspirating reflux again (i.e. a failed fundo), we won't do the surgery again unless he declines to the point where it is life threatening again. The surgery is too hard and complicated. It is very INVASIVE. A six inch incision vertically down the abdomen with complications a mile long is not to be taken lightly. It is only a last resort. However, Eli's declining respiratory status could just be from his continuation of aspiration in swallowing along with asthma and BPD damage. His pulmo told us to prepare for many stays in the hospital this winter for oxygen.
Let me know if you need more info. I have a ton of it. Parent-2-Parent is also a fabulous resource for fundo info and tube feeding info. The ladies there can be intimidating and negative at times (depeding on your outlook on medical procedures) so if you aren't medically oriented, try to take some of their advice with a grain of salt. Feel free to e-mail me too at kappavb at yahoo dot com.
Good words.
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