Category: Seth’s updates

Hello everyone. It’s been over a month since we were discharged from Craig Hospital and it is way past time to do an update. After lots of tearful goodbyes to our Craig family, we took a medical flight back to Phoenix and arrived by ambulance back home. It was nice to be back in the 77 degree weather!

During that first week home, we had a drive thru welcome home parade and WOW! Over 70 friends drove by to say hi and it was so awesome! Here’s a fun video that Hannah put together to remember the day

To be honest, it’s been overwhelming, exhausting, time consuming and back breaking. But in the same breath we would do nothing less for Seth or anyone else in our family. A friend mentioned that we replaced a whole team of people that have been taking care of him since 4/3/25, so that put things in perspective.  Seth apologizes a lot that we have to take care of him but we quickly respond by saying that’s why God made parents: to take care of their kids.

Christmas was intentionally quiet which made it more meaningful. The tree and outside decorations were put up by family and friends before we got home.  People brought food and sent thoughtful cards and gifts. We took Seth to Christmas Eve service.  When Luke 2:19 was read, Mary pondered these things in her heart, I had an instant flashback of our 9 months of uncertainty and hope and I wondered to myself, is this what it feels like to ponder? To have a heart that is heavy and happy at the same time? To continue to feel like “Here we are after all that has happened and we still need God to help us each day?”

Life at home looks different now. Seth sleeps in our family room because it’s a lot of work to get him upstairs in his own bedroom.  We have medical equipment and supplies throughout the house and it takes us much longer to get ready for the day and out the door for therapies or doctor appointments.  But he makes us proud by working so hard in PT/OT which are helping him make progress in moving his arms and legs and increasing his core strength.  Next week speech and neuropsychology are added to the mix.

That being said, he is still in a lot of pain in his neck, back, arms, legs, fingers, shoulders (basically everywhere) and has cognitive issues with short term memory loss. Your prayers are still appreciated about those. His Baclofen pump was increased 5% to help with the spasticity of his left leg. We’ve started acupuncture and massage therapy. Visits from friends and family take his mind off of things, so don’t hesitate to ask for a time to stop by (for those that are waiting for me to let them know, I promise I’ll get back to you). 

For all the prayer warriors out there, please add Lucas to your prayers. His mom gave me permission to share that he was in a motorcycle accident in October a few miles from where Seth’s was and underwent 8 surgeries and suffered a brain injury.  Although Seth and Lucas’ injuries are different and their recovery will be different, the thing they have in common is that they were at the same ICU, LTAC and Lucas is now at Craig Hospital on the same floor and wing that Seth was! And, what I understand is that he is being followed by the same team too! So, for those that are following this update that took care of both of them, thank you!!!  You are amazing and we love you! God’s got you, Lucas!

Thank you again to those that check up on us and keep encouraging us. It means more than you know.

~Darcy

Yesterday, Seth and I went on an outing with some other families and staff to the mall. If anyone wants any constructive criticism to help make their business more wheelchair friendly, please let me know. It was quite an experience to be confronted with blocked or small aisles, heavy bathroom doors, and other obstacles which would make me rethink ever going in certain stores again. But I digress. 🙂

Our last update mentioned Seth getting a GI EGD test and results showed nothing of concern. The next day, the doctor felt there was not an immediate need to stay for Friday’s ENT appointment, so (drum roll please), we are officially coming home!

On Thursday, Dave packed the car to the brim and is now at home finishing up some modifications for better accessibility at home.

Seth and I will fly back on Tuesday, Dec 9th.

While we are extremely happy to be coming home, we also know that seeing everyone we’ve missed all at once will be a little overwhelming. To make things easier, we’re putting together a simple welcome-home car parade this Saturday, 12/13 from 10-11am. Friends, family and supporters can decorate your car or have posters, drive by and wave (please avoid honking). We will be on the driveway waving back.

Please message us if you need the address. Once we’ve had a little time to settle in, we’ll start arranging visits for those that missed Seth.

Please pray for a safe flight and a peaceful transition from hospital to home.

~Darcy

We were blessed to have some visitors since the last update 20 days ago. Thank you to those that visited us and brightened our day with familiar faces and a remembrance of home.

Last week, we were told that our discharge date mid-November has been delayed. The Dr would like the Baclofen pump put back in before we leave Craig (to replace the one that was removed 6 weeks ago due to complications). We have been waiting for a surgeon to have time to do it, but today, we got word that surgery may happen this week but still nothing on the schedule as of yet.

This pump would drastically help the tone of his arms and legs which would make mobility and rehab so much more beneficial.

Right now, to compensate having no pump, Seth is on 3 different muscle relaxers with the side effect of drowsiness and fatigue. These side effects can make therapy sessions less effective because he’s too tired to actively participate. Regardless of the muscle relaxers, he has still been in a lot of pain. Anyone that has been in pain knows that it can be deeply discouraging both physically and mentally to want to keep motivated.

A recent highlight Seth had was getting to drive an off-road cart in Recreational Therapy. Cast #18 was put on his left arm today. Thankfully, this one is removable but still needs to be on the majority of the day. Dave and I finished a weekend of Independent Living which meant we had 48 hours with as little nurse intervention as possible giving meds and doing daily living activities as if we were home already.

Specific prayers this week- That surgery is scheduled and that God guide the surgeon’s and team’s hands for a successful outcome with no complications. That pain turns into progress and that we are able to come home sooner than later!

This week was a fairly good week for Seth. His wheelchair was fitted with a joystick in the front with the goal of being able to maneuver it himself. Of course, Ben didn’t hesitate to go outside a couple times for Seth to try it out. Ben encourages him to try new things that are hard but yet compassionate when hard is just too hard for now. His hands and arms are still in splints and a cast, so he’s been in pain and hasn’t slept well because of it. Speaking of casts, #13 comes off tomorrow-and more than likely replaced with another one. Serial casting helps muscles that have tightened after a brain injury. Switching and adjusting the casts every few days works better than having it on for a longer period, hence providing continuous muscle stretching and better flexibility.

Another positive thing that happened is that we got our off-campus pass privilege. Although we can’t get off campus via van, we can take Seth on a walk outside of the hospital perimeter by ourselves. Our first off campus adventure was walking to the Starbucks down the street-it was a happy moment for all of us (see pix of what was written on his cup).

Seth’s IV antibiotics are finally done! Actually, his midline fell out as his nurse attempted to hook him up to his second to the last dose. Thankfully, since he had been on IV antibiotics since 8/29 they decided to not put in another line and he could be done with all of that.

Two new rehab activities have been added to his therapy sessions. One is called an Erigo, which is a tilt table that uses electronic stimulation to promote stepping reflexes. The second is the Xcite machine which sends electrical signals to specific muscles to passively exercise and retrain them for strength and functionality.

Please pray specifically for brain healing and memory recollection and a ten-fold increase of strength and movement of arms and legs. God’s got you, Seth!

~Darcy

As of the last update, we were waiting for a decision on getting Seth’s Baclofen pump removed. The doctor explained that surgery was likely imminent since he was having so many recurring issues especially with the catheter site filling up, and each time they drained the fluid, it could have introduced more bacteria. The previous culture didn’t show meningitis but because he was started on 2 IV antibiotics right away, it could have skewed the culture.

Thankfully, Seth was in a pretty good mood and was able to have a week full of therapies. His AFO’s (Ankle, Foot Orthotic) finally arrived. These will fit into shoes to keep his foot in the right position to help in more weight bearing therapies.

Although Seth’s memories prior to the accident are pretty impressive, the ability to retain short term daily memories is still a struggle. His speech therapist told him, “Don’t say, I don’t know. Say, let me think about it. So, your brain doesn’t give up.”

Seth was finally whisked away on Friday 9/12 at 4:30pm. Surgery went well and the doctor said that he did see something around the pump, maybe an infection which they have sent for labs. Dave and Ben went to the recovery room and found the nurses surrounding Seth’s bed watching his dancing videos on YouTube. He will tell anyone that he meets that he is a dancer and to watch him on YouTube. The ipad & stand that they were watching on had a sticker that said “Distraction Therapy” which is hilarious to me. When we got back to his room, he was on 24 hour flat bed rest which was no fun, for him or us.

This weekend and today he has been in a lot of pain and not sleeping well. The thought is that he is going through Baclofen withdrawals since the pump is no longer administering the medicine directly into the fluid around the spinal cord to act on the nerves to reduce the severity of the muscle contractions, stiffness, spasms and pain.

Yesterday, we joined a gathering in an education room where a patient was live streaming the sermon from his church in California. Although the hospital has a chapel, there are no formal services, so word of mouth has spread and the group gets bigger each week to join him. A couple from his church’s worship team even flew out to lead the service in song.

My take away of Sunday’s message is that our world is broken, broken hearted and broken bodied. I am comforted and strengthened to get through every single day with mercies anew because of the hope and promise of a future with our Savior. There is nothing else earthly to depend on. God tells us he is the healer of broken hearts and broken bodies and we will delivered from the afflictions that this world puts upon us.

Keep your hearts and minds “steady and ready” for such a time as this.

Specific prayers: Please pray for pain management and sleep!

-Darcy

BIG Bold prayers needed for Seth!

It’s been a while since my last update as we’ve had a lot of unknowns and challenges that I haven’t had the brain capacity to put them all in an update. As a friend mentioned, it’s so much easier to write good news and progress than struggles and new complications.

The last update was that Seth had a blood patch to stop a CSF leak on 8/27. On 8/30 the catheter site of the Baclofen pump had filled up yet again and complained of his neck and head hurting. Along with a fever, these are symptoms of possible meningitis. Antibiotics were started.

On 8/31, Seth was transferred to Swedish hospital neuro ICU for monitoring and possible surgery to remove the Baclofen pump if that was the source of infection and why the catheter site continues to fill.

9/1- Still in ICU, but feeling better, fever and WBC had gone down. Surgery is postponed due to the meningitis not being confirmed yet and if we can avoid a surgery that would be best.

9/2 – Fluid drained again and samples taken for Beta 2 Transferrin (CSF) and meningitis (still pending). Moved to 7th Floor neuro unit. The next few days were LONG and sleepless and the care wasn’t up to the standards we had at Craig.

9/5- Cultures for meningitis are still “culturing” but we were finally able to go back to Craig! Praise the Lord!

9/6 – Midnight-Seth started complaining of head and neck aches again. At 4:30am, the symptoms persisted and was accompanied by high blood pressure 180/107 and 101.6 fever. At 10:45am, BP was 160/91 and 103.6 fever and nausea. Unfortunately, the WBC are on the rise again. Yesterday, the antibiotics were changed so the doctor changed them back to see if that is the issue.

As of writing this, we are waiting for the primary on-call doctor’s opinion on all of this and if we need to go back to the ICU.

Of course, in between all of this, there has been anxiousness, uncomfortableness, sleeplessness, miscommunication, no communication, and lab results that take forever. He has missed a week of therapies which haven’t helped him physically or mentally, too.

Ending on a positive note, Benjamin turned 25 this week. We know that it was a far from ideal way to spend his birthday, but I hope he knows what an incredible son, brother and friend he is and he is VERY much loved to infinity and back.

Kerry and Jason were here last weekend when all of this started. We were amazed by a beautiful double rainbow which reminds us that God is here with us in this place. One of the nights that Dave spent the night, Seth woke up and called for Ben. Dave got up and said, “I am staying with you.” Seth responded, “That’s all I need.” I’m comforted that Seth knows he is safe and surrounded by love in these extremely difficult days. I pray for all of you, that you know that Jesus is “all you need” too.

Specific prayers include healing of symptoms and wise decisions from each doctor over his care. We continue to need BIG bold prayers for miracles on top of miracles for Seth’s healing and recovery.

-Darcy

It’s been a rough week for Seth.

Mon – The fluid collecting at the catheter site still hadn’t subsided. The drain had been closed since they didn’t want the cerebral spinal fluid draining. Mobility was limited and he was exhausted and still had no appetite.

Tues – The drain that was placed in the fluid pocket on Friday was removed to prevent a source of contamination or infection.

Wed – A blood patch procedure was done in which a small amount of his blood was injected into the epidural space to naturally form a clot to seal the leak. (Fun fact: The epidural space provides a cushion for the spinal cord and protects it from injury-pix attached). The fluid that had accumulated was drained to create a new baseline if it should leak again. Unfortunately, this meant that he was on 24 hour bed rest only laying flat down and could only be fed through his tube.

Thurs – It was a LONG 24 hours for all of us but at 11 am Seth was in his wheelchair and we went straight outside for some sun. He also got his left full arm cast off and now only has elbow and hand splints to wear. He has been in multiple casts for both arms for over a month. OT is impressed with the progress his arms, wrists and fingers have made.

Craig Hospital has a Peer Mentor Program in which former patients come to visit, tell their story and encourage others that are currently going through their own difficult journey of healing inside and out. We have met some wonderful people. One such young woman who sustained a brain injury from an accident 12 years ago painted Seth a lovely picture of a desert scene (and of course included a bunny!) 12 years ago, her life’s plan to help others changed in a way that no one expected. But her purpose didn’t change and she continues to make a difference— in a different and more beautiful way.

Attached is her stunning picture and heartfelt message of HOPE for us and really to anyone going through the rough days.

Specific prayers today: That the blood patch continues to be successful and there are no more issues with the Baclofen pump.

-Darcy