Support Kayson’s Journey

Thursday, January 16, 2024:

Kayson was transferred to Johns Hopkins All Children’s Hospital in St. Petersburg, FL, under the care of Dr. Smithers on Tuesday, January 14. It was determined that Kayson needed to undergo tracheopexy surgery on January 16 to correct his floppy airway. The surgery went as planned and Kayson will now begin recovery. Recovery time will depend upon how Kayson’s body responds after surgery. He is such a determined little fighter, and we believe God will see him through.

Friday, January 10 update:

Kayson underwent surgery for a tracheostomy on December 18. Since then then medical team has been unable to wean him from sedation because his airway collapses when he becomes agitated and has caused him to have several episodes where his stats have dropped and a code blue is called. The airway collapse is due to severe bronchomalacia. ACH referred Kayson to Johns Hopkins All Children’s Hospital last week to Dr. Smithers. He is the leading surgeon in the country for this area of expertise. It is a huge answer to prayer that Kayson has been accepted as a patient by him. Kayson will be transferred to St. Petersburg, FL on Monday, January 13. He will undergo further testing to determine which procedure will benefit him most. Once the procedure is determined, surgery will be scheduled. Right now we do not know how long Kayson and family will need to stay in Florida. Thank you all for the continued prayers and donations!

It has been awhile since we did an update. Kayson got to come home from the NICU in August, and had been making good progress at home. Kayson tested positive for rhinovirus on November 2, and on November 5 he was airlifted from Mercy Fort Smith to ACH in Little Rock. Kayson originally left in stable condition, but experienced a serious episode where his oxygen levels and heart rate plummeted. Thankfully, his medical team managed to stabilize him again. In the past 72 hours, Kayson has shown some improvement but remains in critical condition. The doctors confirmed that his heart is moving in a positive direction, and the drops in his stats are not seizures but rather his lungs clamping down. His left lung is collapsed, and there are several collapsed areas in the right lung due to excessive pure oxygen displacing nitrogen. Currently, Kayson is intubated and will stay that way until his lungs improve. There's no clear plan for his recovery yet, and we're uncertain how long we'll be in Little Rock, but we’re holding onto hope for Kayson’s healing and for his medical team.please keep Kayson, Tyler, and Pacie in your prayers as they navigate his hospital stay.

5/7 update: We got 2 big surprises Sunday: First, Kayson got moved to a new pod! His new pod is for babies who are well enough not to need such a high amount of care. Second, he got moved down from 3 liters of high flow oxygen to 2 liters! Of course this happened after his mommy posted a new update. He got visits and cuddles from both grandmas and his grandpa Passmore over the weekend. Today they moved his orogastric feeding tube to his nose (now a nasogastric tube) in preparation for him to begin attempting to bottle feed. He has come so far in the 2 weeks he’s been at Children’s and we are so proud of him! We are not sure how long Kayson will stay at Children’s, but the plan is still in place to take him to Nemours Children’s Hospital in Wilmington, Delaware, this summer. They have a world renowned group of doctors who specialize in treating children with skeletal dysplasia.

4/29 update: Kayson can wear clothes now! He has been moved onto a nasal cannula and has been taken off of caffeine, which will hopefully settle his heart rate a little. Both of his grandmas got to love on him over the weekend too!

Update on 4/25: Kayson was transferred to ACH on Tuesday, April 23. Since the transition he has made so much progress! He is out of an enclosed isolette incubator and is in an open isolette. Tyler and Pacie got to give him his first bath and he absolutely loved it. On Wednesday, April 24, he was moved down from the continuous mechanical vent to a cpap vent. He has such willpower and fight. Pacie and Tyler spoke to the geneticist ACH on Wednesday, April 24, and they are confident Kayson has Spondyloepiphyseal Dysplasia Congenita (SEDc). This is a rare genetic disorder with an incidence of 1 in 100,000 births a year. It results in short stature and skeletal anomalies that primarily affect the spine and long bones of the arms and legs. ACH believes Kayson will be in Little Rock for almost 2 months. We appreciate all of the love, prayers, and support you have given Tyler, Pacie, and Kayson.

Update on 4/21: Kayson will soon be transferred to Arkansas Children’s Hospital in Little Rock to receive more specialized treatment to help wean him from the cmv vent.

There have been many of you asking for ways to support Tyler, Pacie, and Kayson. It has been such a blessing that Kayson has remained stable enough to stay in the NICU at Mercy Fort Smith.

Kayson is on target to be discharged from Mercy in mid May. There is a plan in place to travel to Delaware this summer to Nemours Children’s Hospital for testing and an initial consultation with skeletal dysplasia specialists.

Getting a diagnosis can be a long and expensive process, but will allow Tyler, Pacie, and the doctors to create a path of treatment as Kayson grows and continues to develop.

Your prayers for Kayson, Pacie, and Tyler are so cherished! If you are unable to donate, please continue to pray for this sweet family. If you decide to donate please be assured that your donation will go directly to expenses associated with Kayson’s visits to Nemours Children Hospital.

“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13