Welcome Friends!
Michael L.
UTAH
Birth Date - June 26, 2002
Main Diagnosis - Colonic Inertia, Gastroparesis, Cerebral Palsy, Autism, Chronic Severe Constipation, Epilepsy, Sensory Processing Disorder
Quilt Deadline: 5/1/2012
THEME: MODERN ranch. No cowboy and Indian type patterns--- In their place we really need some trucks and tractors. Cowboys still work fine and horses and cows and sheep and barns. Scenery appropriate to a ranch setting appropriate to Utah would be good. Canyons, mountains, canyon lands type rock formations .... all possible.
Biography
Mikey was born a seemingly healthy baby but soon developed problems within about two weeks of birth...first salmonella then monthly hospitalizations for dehydration due to vomiting from what we later found to be severe GERD. During those first five months of repeated admits we also discovered the seizure disorder and noted that there were no developmental milestones being met but assumed that was due to illness.
Five months into his first year we were finally referred to a children's hospital for testing and the GERD was diagnosed as well as Failure to Thrive, Renal Tubular Acidosis, Anhidrosis and Cerebral Palsy. He received his first major surgery, a nissen fundoplication and pyloroplasty with placement of a g-tube, by the time he was 6 months old. Somewhere during this period he was also diagnosed with Gastroparesis though we didn't find out about it until we moved to another state and the next doctor read it in his records. Over the next 8.5 years they added nonverbal, apraxia or possible dysarthria, motor apraxia or dyspraxia, classic autism and sensory processing disorder, possible prenatal stroke was diagnosed as well as allergies to the reglan and erythromycin as well as latex and plastic tape. Chronic constipation also ensued and began to worsen.
At 9 years old our current and long standing treatment regimen for the severe chronic constipation ceased to work and last month after three in hospital cleanouts in two months and tests to try to discover the cause of extreme lethargy and seriously low heart rates he was readmitted for more major abodominal surgery. It was discovered that he had severely distended large intestines in several places (basically a megacolon) and colonic inertia and that what was thought to be "extra" sigmoid colon was instead extremely stretched out and flaccid worthless sigmoid colon....about 30 cm worth of sigmoid colon was removed two weeks ago and an appendicostomy (stoma made from his appendix and exited through his belly button) was placed in order for us to discontinue the non working laxative and to begin administering daily antegrade enemas....no one knows for how long. During all this with the low heart rates and lethargy and major surgeries my kiddo that was finally eating EVERYTHI
NG by mouth (preferred veggies to my favorite junk and comfort foods though)suddenly started choking on liquids and refusing solid foods and has now regressed backwards to being completely g-tube fed. :( Not sure what is wrong there but it really worries me. Now we await a consult for speech (feeding) therapy and we are also awaiting a consult for pulmonology to determine if he has sleep apnea due to several episodes of "breath holding" while asleep at the hospital and hooked to monitors....that could mean either a mask (on an autistic kiddo with sensory issues??) or more surgery...he's already had adenoids removed but not tonsils as they were not and still are not swollen but apparently if all adenoid tissue is not removed they can regenerate and if sleep apnea is severe enough and CPAP masks are not possible then they can rebuild the throat a little differently so that it doesn't collapse as easy....I'm wondering if there was a reason God insisted on us having a g-tube
now. In the meantime the next upcoming procedure is placing a chaite trapdoor in the appendicostomy site under sedation on the 26th of October. He has already rejected the stitch that was supposed to hold the tube securely in place until that time....not the first time he's rejected stitches either. Well, that is our story in a nutshell up to the current day and I sure would like for some of the more serious chronic stuff to go away now so we can get down to dealing with the simple stuff like learning social skills and how to talk and basic milestones ;)
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