The Obstetric team induced Kayla 2 weeks early as a routine ultrasound showed that Jaxon's stomach was not developing the way it should.
They noticed that he was having trouble breathing and immediately attempted intubation and hit a dead end and were unable to proceed and realized the severity of the situation. A scan revealed that his esophagus was not attached to his stomach. Within hours Jaxon and mommy Kayla were airlifted to the BC Children's hospital in Vancouver. Daddy Tyrell drove for 5 hours to be with them. Kayla and Tyrell have remained at Jaxon's side ever since then.
At 2 days old Jaxon underwent a 5 hour surgery to repair two birth defects in the esophagus and trachea.
In that first week it was discovered that Jaxon was born with multiple complex medical conditions and it is quite the list.
Tracheoesophageal Fistula and esophageal artresia
Full hard cleft palette, 2 uvulas and small recessed jaw- to be repaired when he is 14-18 months old
Severe tracheomalacia which is the collapse of the airway when breathing
VSDx3- 3 holes in heart of which two have closed themselves, 1 is being monitored
Pseudarthrosis of clavicle, another possible future surgery
Extra set of ribs
Skeletal muscle stiffness and contracture which require him to wear a splint on his right hand and physical and occupational therapy on his hand, hips, legs and other joints
Hearing impairment which may be a result of the cleft pallet or not. Will know more after multiple surgeries for his pallet.
As I mentioned Jaxon has a compromised airway and is having difficulty breathing which requires surgery within the next couple of weeks. The two options are tracheostomy or a 12 hour surgery that can only be preformed at the Boston Childrens Hospital. His complex care medical team has sent his chart out globally for second opinions. They are still waiting to hear from Bostons Children's Hospital- Airway Treatment Centre.
Jaxon has had surgery to put a feeding tube into his stomach (G tube) however he suffers from severe reflux and vomiting, and due to the danger of aspiration, they have disconnected his tube and have been feeding through a NJ through nose and into the small bowel. This will be replaced with a GJ tube into the existing stomach port.
A lot to take in? What has caused this complex medical condition? Here is where it becomes complicated.
Enter the Genetics Team. After doing a full DNA investigation they discovered in their own words " Jaxon is perfectly Jaxon"
Jaxon has a Trisome 8PQ, with no deletions. Don't bother googling it, it's not there. There has never been a documented case of this genetic make up. He literally is one of a kind.
As a result of "Jaxon Syndrome", they are flying blind and the only one who is able to guide them is Jaxon.
What WE know is that Jaxon is alert, loves to smile and loves his cuddle and playtime. Also now that he has discovered TV, he loves cartoons. Most important is he is LOVED.
What we thought would be a few weeks stay has now become a 3 and a half month stay. Jaxon just reached his 100 days in NICU milestone. There is a very good chance he will not be home before December.
How are Kayla and Tyrell Langdon handling their stress and anxiety? I am proud to say they decided to do something to keep their minds occupied.
They have been very busy. Kayla is making designer onesies and Tyrell is knitting toques for premmies and newborns in the NICU. They have a basket of them with a sign that says Made with love, Help yourselves and parents are. Word got around about what Kayla and Ty were doing and Global TV did a piece on them over the Thanksgiving weekend. To view go to this link:
The families have been preparing for their return home and this is why we feel that it is now the time that they need help to make this happen.
Jaxon needs a safe healthy environment to come home to.
Tyrell and Kayla live in a rental above a store with 25 steps up to their apartment. It is a very nice apartment and they put their Langdon twist on it and made it their home. They finished it off with an adorable little nursery to bring Jaxon home to.
Unfortunately Jaxon's nursery is going to look more like a hospital room than a nursery. He will be requiring oxygen tanks, feeding tube apparatus, monitors and other equipment and supplies. An alarm system with direct ambulance call help. If Jaxon has a tracheotomy he will be unable to cry, they will need a video monitor as well as a back up generator. It is advised that they will also need a dust free filter system, a dishwasher with a sanitzer to sterilizes his tubes and other equipment as well as a washer and dryer with a sanitizer feature. Bacteria is Jaxon's worst enemy. To be blunt as the doctors have said a cold could be fatal to Jaxon.
A second story rental will be unable to accommodate their needs.
Kayla's parents Brandi and Rod Butts decided to sell their home and purchase a home with an above ground in law suite. They found a home in their price range.
The family has purchased all the appliances Jaxon will need. It is necessary to convert the appliances to gas to free space on the electrical panel to accommodate Jaxon's medical equipment. They have also purchased all the laminate flooring as carpets can't be left.
What Kayla and Ty will need is help redoing the suite as it was a do it yourself project making the suite was done without permits or to code.
The furnace is 27 years old and will not support a dust free environment. An HVAC system is mandatory and will help with temperature control as well.
The nursery and kitchen need to be rewired. Gas vents need to be run, 3 windows will need replaced, insulation in the ceiling and it will need to be drywalled due to mold found behind baseboards.
We are reaching out in need of financial assistance and/ or help with labour or materials. Your donations will go directly and only to making a safe home environment for the Langdon's and to develop a savings base for future travel expenses for what will definitely be years of surgeries and procedures.
Feel free to share this page. Thank you on behalf of Jaxon's entire family!
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