Nate H. - Quilt Finished in 2006

Born: May 13, 2002

Illness: Eosinophilic Gastrointestinal Disorder, OCD, Aspergers, Asthma

A Thank you from Nate's Family!

Written May 3, 2006

Thank You SO MUCH!!!!  I cried when I unfolded and looked at all the hard work, dedication, and LOVE put into the making of his quilt.  You have given him something he will always treasure.

God Bless,

Ashlie and Nate H.

Nate H.'s Story

written by mom Ashlie

After 9 weeks of hospital bed rest, Nathan was born via C-Section on May 13, 2002 at 35 weeks gestation.  Within minutes after birth he was rushed off to the NICU, and intubated within hours.  Nate was only 5 weeks early, weighed 6 lbs 7 ozs, and was 19 ½ inches long.  He was not considered a preemie, but Nates lungs were very underdeveloped.  He was unable to breathe on his own his first 14 days of  life.  After he was taken off the ventilator he still remained on 4% nasal cannula oxygen because his respiratory and heart rates were three times the normal rate.  He was fed via NG tube.  For the next 3 weeks Nate was watched very closely, and all vitals were checked every 5 minutes.  He had 2 episodes of sleep apnea during his NICU stay.  Finally on June 8th we were able to take him home. Nate was nearly a month old.  The happiness was short lived.

At 6 weeks of age Nate began projectile vomiting.  He was diagnosed with Severe GERD and started reflux medications at that time.  In July of 2002 Nate had a brief hospital admission for wheezing, and low O2 Sats.  From July to September he did great, but still continued to reflux despite the meds and thickened feeds.  In September of 2002, Nate was a very sick little boy.  He was admitted into the hospital for what was thought to be pneumonia, according to the chest x-ray.  After 10 days of IV antibiotics Nate was still on steroids and oxygen and was still very sick. Between September of 2002 and April of 2003 Nate had 19-hospital admissions for Respiratory Distress Syndrome.  Nate began seeing a Pulmonologist in October of 2002.  We saw him once a month for a physical, chest x-ray, and chest Cat scans.  Nate had his first Bronchoscopy at 8 months of age, and first Endoscopy at 9 months of age.  The results were terrible.  Nate did have pneumonia, but it was Aspiration Pneumonia. He also had severe esophagitis, and his esophagus was red, bleeding and inflamed.  Nate had been suffering from Severe GERD with Chronic Aspiration since birth and we had no idea.  His reflux meds were changed, feeds were thickened to nectar thick, and a series of test were started.  Nate has 2 abnormal swallow studies, and 2 very abnormal ph probes.  Despite the meds and thickened feeds Nate required a Nissen Fundoplication at 11 ½ months old.  This is a surgical procedure for people with severe GERD.  Nate's stomach was wrapped around his esophagus to form a pouch.  The purpose was for “nothing” to leave the stomach.  However the surgery did cause Nate to develop Delayed Esophageal Motility Disorder.

After being discharged from the hospital with this “new” reflux fix, Nate did well for a few weeks.  Than he began to gag and retch.  He was getting frequent cases of hives, wheezing, and chronic ear and sinus infections.  We had then determined that Nate was allergic to Milk, Egg, and Soy.  He was placed on Peptamin Jr. (a milk based formula that is broken down into simple molecules).  Nate was still sick, and was now failure to thrive at only 18lbs 2ozs at 15 months old (he weighed 24.6 at 11 months old).  So I began my research.  In October of 2003 Nate was diagnosed with a Rare Auto Immune Disease known as Eosinophilic Enteropathy.  Nate has about 20 known food allergies and is unable to tolerate any foods. At 16 months old Nate started a diet of Formula only via bottle of Neocate One Plus and at almost 3 yrs old still bottle-fed.  I’m still fighting a gtube.  Nate has been formula only for almost about 18 months and is thriving.

After tackling that diagnoses, we then had Nates developmental issues to deal with.  Nate was non-verbal, had severe sensory problems, and his ankles were pronated (he didn’t walk until 15 months).  Nate also has moderate to severe Hypotonia in his arms, shoulders, hips, and legs and he’s Hyper mobile in his hands, wrists, ankles, and feet. He is unable to hold his own bottle because of the weakness, and mobility issue with his hands and wrists.   Nate started Speech, OT, and PT at 19 months old.  He still receives therapy today.  A recent evaluation at The Center for Child Development was inconclusive.  They did not rule out Autism, but are leaning closer to ADHD with OCD.  A Neurologist has confirmed the OCD. We declined medication, but are cracking into the therapy harder. Nate has a lot of Autistic tendencies, self stimulates, and self injures, and can injure others if not careful.  He has been roaming since he learned to walk, and has now learned how to get outside.  It’s very scary.

As of Today, Nate is a wonderful happy little boy.  He looks so healthy and full of life. He is still formula only, his Nissen Fundoplication has failed and his last Bronchoscopy in Oct. 2004 showed aspiration in his right upper and medial lobe. His speech is still very delayed, he will need surgery on his ankles when he’s older, and his sensory problems are much worse than they were before.  He has also developed a Stridor, which is loud, raspy breathing.

Nate has had 29 surgeries, procedures, or tests that required anesthesia and hospital admissions. Anesthesia makes Nate very sick…

On the developmental end, he will be starting the Special Education Preschool at the Elementary school in the fall. He all ready attends a preschool for special needs children. He’s considered to have multi-level diagnosis because he has lots of Medical problems and needs as well as Developmental delays and need to therapies, and maybe one-day medications. His PT seems to think, as Nate gets older he will need braces on his legs. He falls a lot when he runs, and the only way he can stand and balance is to grip the floor with his toes.  

Nate will need many more surgeries as he gets older, there are no statistics on his EG so we have no idea when or if Nate will ever be able to tolerate foods again. And his Developmental Issues are just a wait and see kind of thing. Nate has been tested for Metabolic and Genetic Disorders with nothing. We are still hoping that in some way all of these medical conditions tie together.

As of May 2005, Nate began Zoloft. And we now have a concrete diagnosis of Disruptive Behavior Disorder, and Aspergers. Nate has also failed 6 food trial and was diagnosed with Mild Hyperlordosis.

Written by Nate's mom Ashlie on May 29, 2005