12/12/25 update

Day 22 - After 20 days in the PICU, Mason was moved to the general pediatric wing. We are still dealing with withdrawal symptoms as he is weaning off medications. This process will take time for his body to metabolize the medications appropriately. He has finally smiled a few times the past few days - mostly for dad and FaceTiming with our dog Teddy but is pretty stoic, grumpy and restless otherwise. We continue to have GI issues and difficulty with absorption of medications and nutrition. The lack of absorption is also impacting his wean off the sedation medications. This left us no choice but to place another PICC line for Mason to receive IV nutrition while we wait for his belly to wake up and hopefully tolerate feeds, though it’s possible that he will have to continue IV nutrition indefinitely if his belly doesn’t begin functioning again. There is of course the risk of another infection with the new PICC line and we are concerned about that. Due to his many complexities, we have minimal choices on how we proceed. During his stay in PICU and some of his lab work, they unexpectedly found that Mason has an inability to create cortisol and is struggling with adrenal insufficiency. We had a training this afternoon with his endocrinologist to learn more about the adrenal insufficiency, how it may be impacting Mason and the new medications we will begin to support hormone production. There have been a lot of discussion and decisions that are being made behind the scenes on how we can best support Mason in the time that we have left with him and the future still feels imminent and uncertain but we are managing one day at a time. Eric and I will have to complete an additional training around Mason’s increased needs this upcoming week and we hope to begin feeding trials this weekend or early next week to see how he responds. We are surprised by Mason’s resilience through the past several weeks especially after being told multiple times that he may not recover from this infection and the repercussions of the infection on his body. We see how the Lord is working in and through this trial and we are SO beyond thankful for the continued prayers and support.

MASON UPDATE: 12/4/25

This past week has been a mix of progress, setbacks, and steady determination.

On Friday, the team planned for possible extubation, with sedation being gradually reduced in preparation. Unfortunately, on Saturday, his chest x-ray showed worsening lung status, and he began to struggle more with blood pressure stability.

By Sunday, it was clear he still wasn’t quite ready. The team shifted focus to continued respiratory support and breathing trials to help strengthen and assess his readiness.

On Monday, he was able to be extubated in the early afternoon and was switched to a BiPAP oxygen mask. We were told that if he were to fail from airway complications, it would likely happen within the first hour, whereas cardiac-related difficulty would likely appear within six hours. Thankfully, he made it through that window, though the day still required intense support. We also created a memory craft with Maggie due to the uncertainty of his outcome.

Tuesday early morning he transitioned to high-flow oxygen, continued withdrawal medications, and ongoing respiratory therapies. Tuesday was one of the hardest days. He is experiencing significant withdrawal from narcotic medications, leaving him very irritable and uncomfortable. His gut function has slowed and right now we don’t know if this is purely medication-related due to being on narcotics for so long or a sign of progressing heart failure. The medical team explained we may not have clarity for some time on why his gut isn’t waking up. Several attempts were made to place an ND feeding tube, but unfortunately, all were unsuccessful.

On Wednesday, he had a calmer, more stable day. We were originally told a GJ feeding tube might be placed, but the procedure has now been rescheduled for Thursday so that anesthesia and ENT can be present to support him safely, especially if his airway or sedation becomes difficult. We are grateful for a day of steady breathing, and even more grateful that he was able to sit in a chair and snuggle with dad — a moment that meant everything to us.

As of this morning, he’s having continued difficulty with managing his cough and oxygen levels due to the cold he has had in addition to his body recovering from the sepsis. He was able to get the GJ tube today, but we are waiting to see if he is able to absorb his medications.

We are so thankful for every small step forward and for all the prayers, love, and support surrounding our family. Please keep them coming as we continue to take this one day at a time.

ORIGINAL POST

Mason is a joyful 10-year-old boy with Mowat-Wilson Syndrome — a rare condition with only about 400 known cases in the world and Mason is the only person in Spokane with this diagnosis. He has spent much of his life in and out of medical care due to his many complexities, but these last two months have been the hardest his family has ever faced.

Earlier this year, the family learned that Mason had entered congestive heart failure and that his condition is inoperable. They were given a 5-7 year lifespan. About a month ago, Mason had a PICC line inserted to help manage additional health struggles. Then on Thursday, November 20th, he suddenly spiked a fever. With a PICC line, that means an immediate trip to the ER. He was admitted right away, and in the early hours of November 21st he experienced a life threatening cardiac event due to being in septic shock and the Graham family received the call no parent should ever get — they were told Mason may not make it through the night.

Since that moment, Mason has remained in the PICU: sedated, intubated and on a ventilator. Due to having a compromised airway, there is uncertainty if Mason will be able to maintain his airway safely after extubation and re-intubation is extremely difficult. His future is heartbreakingly uncertain, and his parents, Eric and Kelsey, are living every moment at his bedside praying for Mason’s comfort with what the coming days may bring.

During times like these, many people reach out asking, “How can we help?” And while that comes from a place of deep love, it can be overwhelming for a family walking through crisis to even know what to say.

This is how we can help.

By coming together as a community to lift them up, to ease the burden, and to let them focus only on loving their son.

Eric and Kelsey have been unable to work full time while caring for Mason around the clock. With decreased income, financial stressors grow heavier each day. There is also a fear no parent should ever hold — that funeral expenses could soon be part of their reality.

If you feel led, we would be honored for you to join us in helping this incredible family. Every donation, every prayer, every share makes a difference.

Let’s surround them with the love of Jesus in a way they can feel in their hands and in their hearts.

Thank you for supporting Mason and the Graham family.