He currently is wearing an Nasogastric (NG) tube (nasal feeding tube) to ensure food goes to his stomach and not his lungs. Without the NG tube, he aspirates fluids into his airways impacting his immune system. Xander is in treatment currently as an in-patient for 30+ days at
Our Children’s House at Baylor in Dallas, TX.
This disorder is considered Life-Threatening for without the NG tube, he cannot swallow any liquids normally.
Xander was born on March 2, 2014, nearly two weeks overdue. I had to have an emergency cesarean because it had been 24 hours since my membranes were manually ruptured, he was not dropping, and we were risking infection going longer, and he was still clearly not dropping. Due to the long night of contractions Xander’s heart rate kept dropping and my uterus was "tired" so my doctor manually contracted it after C-Section to prevent serious hemorrhage.
Xander was born a beautiful 8 lb. baby with stork bites on his forehead, right eye and under his nose which he will eventually fade away. All his birth tests were normal. He was healthy and even in his baby moments, bright and happy.
At 8 weeks old he began to get very ill over and over again with colds and stuffiness, viruses, bronchitis and ear infections caught at the day care which he had to attend because as a 4th grade teacher I had to return to work. Xander started not wanting to breast feed or take the bottle. It was determined that he needed a "
tongue tie " revision in late April when he was unable to breastfeed normally. But he smiled and seemed happy and was way beyond the normal milestones in many ways – lifting and holding head, rolling over early, finding his toes are some of our favorites. How could there be a problem?
We tried everything we could think of to encourage him to eat without success. He stopped drinking the bottle or very small feedings. Finally, the Pediatrician sent them to a Pediatric Gastrointestinal doctor to find out what was going on. Tests began – a barium swallow with a Speech Language Pathologist (SLP) to see if he was having silent aspirations which he was when he took the bottle – meaning instead of going into the stomach, it was instead going into the airways and traveling to his lungs which is very dangerous for anyone – baby, child or adult.
Xander went to the Emergency Room on August 25, 2014 and was placed in Children’s Medical Center for 6 days for diagnostic tests and getting him well enough to return home. They said he was one step close to ICU when we brought him in.
He had caught three (3) respiratory viruses that he picked up while in Daycare as the Dysphagia impacts his immune system. He was an extremely sick little boy. With me at his side the whole time – distraught and worried beyond my 28 years, I kept a vigilance for our precious boy. My husband Marty came after work and together we held a steady fort to bring our little boy through this horrible ordeal.
More tests followed during his stay and they placed a Nasogastric Tube (NG) to allow him proper feedings without aspiration and to help him with his growth and development!). We were told to continue to feed him Stage 2 foods that are very thick. But to watch out for coughing, vomiting and rejections. Why? Because Xander was diagnosed with Dysphagia - a frightening disorder that involves swallowing and eating!
We have been to more specialists since the hospital stay to include an Ear, Nose, Throat (ENT) doctor who scoped his throat recently. His throat looks fine, but the problem still exists. We had an upper GI done the week before and all was well. While we were at the hospital a GI scan and throat scope revealed no anatomical anomalies which means we have no answers as to why this is happening - they think it may be "acid reflux
" but it has not been finalized. He is currently on medication for reflux but it has not been successful.
The second barium swallow study in early October revealed that his swallow was worse than realized, he couldn’t even have honey thickened liquids in a bottle.
At that time, all of his doctors (Pediatrician, Pediatric Gastrointestinal, Ear Nose and Throat), recommended,
Our Children’s House at Baylor - Feeding Brochure.
Xander is now in their Inpatient Infant Feeding Program for 30+ days and then on-going outpatient after leaving. The cost of this program is astronomical but to help Xander to Thrive and have a normal life someday - we had to do it!
Most of all, I am so sad that I have to leave him at the hospital alone every day so I can bring home a pay check – but we were happy to learn how much all of his nurses and therapists adore him because he's so happy despite everything he is going through. Here dad Marty, Xander and his therapist are creating his First Reindeer.
On Monday, December 1, Xander will have another Barium Swallow to see if the specialized treatment has helped him and if the NG feedings can be reduced. We will also find out when we can take Xander home and how long the out-patient therapies will be and what the plan will be to make our little boy healthy.
Please consider any kind of donation to help us in our "Gift of Life for Xander" and share our page and story to your friends and family. We have learned that 45% of children born have Dysphagia but often parents do not catch the problem right away because they think the child is just a picky eater. We have learned so much in a short time and always learning and sharing with other parents and families about this serious disorder. Your prayers are most welcome too with hope for Xander with your friends and family and the public.
God Bless the Little Children,
Julie and Marty Bowles
- Melanie Tatum
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