- Posted June 17, 2014 by
Oklahoma City, Oklahoma
This iReport is part of an assignment:
Raising a special needs child
Raising a child with special needs
At first they noticed an abnormality with his right arm, then realized he was not swallowing or breathing right, so he was flew via helicopter to the children's hospital even before I got out of the OR. The next two days we found out that he had an H-type tracheoesophageal fistula, an imperforated anus, and three holes in his heart. The genetics specialist explained to us that our son has something called VACTERL, which is an acronym for different abnormalities that come in clusters. Each letter stands for a category; vertebral, anal, cardiac, tracheal, esophageal, renal, and limb.
When he was 2 days old we got a taste of what the next months and years would be like. Elijah, our son, underwent his first out of, so far, 18 surgeries - he is only 16 months old.
Elijah keeps adding more to the long, long, long list of abnormalities and even though it is rare, he has something in each category of VACTERL.
He has an extra set of ribs, an extra lumbar vertebra, a fused sacral bone, possible tethered spinal cord, an imperforated anus (which is why he is in need of an ostomy bag for bowel movements), an atrial septal defect, a ventricular septal defect, a PFO, an abnormal aortic arch, an abarent subclavian artery, an H-type tracheoesophageal fistula, an esophageal web, anatomical urinary tract abnormalities, and level 4 radial aplasia.
Elijah spent more than 6 months of his short life in the hospital, which 4 months of that was in the intensive care unit. As mentioned, he has had 18 surgeries to date and has many more pending. He has had countless testing, such as MRI's, nuclear studies, ultrasounds, CT's, and scopes done.
Due to the different issues he has from VACTERL, he cannot eat anything by mouth and requires tube feeding via a button that goes directly into his stomach. He also has an ostomy bag, a central line in his chest, and requires oxygen 24/7. With his surgeries he has developed comolications such as tracheamalacia, which is a "floppy airway", and additionally to VACTERL he has a seizure disorder.
My life, hi I am Mom, involves around caring for Elijah. He sees ten different doctors inf various specialties, has physical therapy, occupational therapy, speech therapy, language pathology therapy, weekly weight checks due to problems maintaining sufficient weight, and daily in home nursing care.
We cannot plan activities because we never know how Elijah is doing on a day to day basis but I have learned to always be prepared for a hospital stay. I pack as if we go on vacation every time we leave the house along with his equipment, which includes the feeding pump, a pulseox monitor, a suction machine, and of course oxygen tanks.
We can no longer drive as a family anywhere (we are a family of 5) because my car is too small to hold five people plus all of Elijah's stuff, so we just don't even go anymore.
A big challenge is his sleeping arrangements. For the past year, my husband and I take turns sleeping on the couch because Elijah requires a lot of attention even during the night.
Nothing is as big of a challenge, however, as trying to keep a toddler from crying. When Elijah gets upset, his trachea collapses, he can't breath, and he turns blue. This is very difficult because mentally he is completely fine, even above average smart, but he is limited by his body and at times he gets very frustrated.
Raising a child with special needs is hard on a marriage and family. Our two older kids have to be ok with Elijah and myself being gone sometimes weeks at a time and sometimes very unexpectedly. Our girls are amazing and so understanding. They absolutely adore their baby brother and don't ever complain if plans get cancelled or postponed.
Also, Elijah's the happiest, sweetest, most precious kid I could ever think of.
Even though it is difficult at times, I would not trade my baby for any other kid! His love and the close relationship we share is the best reward in the world. A special needs child gives a special kind of love... it cannot be formulated into words. I love being a special needs mom!
- My life