Category: Prayer board for others

Next week, Apr 3, will be the one year mark of our family’s life altering day and the beginning of a long healing journey, 5 weeks in ICU’s, 5 weeks in an LTAC and 6 months at Craig Hospital in Colorado. We are incredibly thankful for family, friends and strangers who have kept our family close to your heart.

In February, Seth ended up in the ER for possible complications of his Baclofen pump. Because his first pump had complications and ended up being removed, we didn’t want to take any chances. Thankfully, the MRI didn’t show anything too concerning so we will just keep an eye out for any other symptoms. A CT brain scan shows he has an enlarged 3rd ventricle which will be rescanned in 6 months for any changes (fun fact: the brain has 4 ventricles responsible for producing and circulating cerebrospinal fluid). He received some Botox to weaken specific muscles to improve range of motion and had his Baclofen pump refilled which involves removing the Baclofen currently in there and injecting a new batch and then it’s reprogrammed (this is supposed to happen every 3 months).

After starting PT, OT, ST, RT therapies at Swan and Rehab Without Walls, we are now at Barrow Neurological Institute twice a week but soon will start a more intensive program to be 3-4 times a week. They are working on strengthening his core to sit, stand and walk with assistance and equipment. His memory is still short but we are learning strategies to help him retain bits and pieces of the day. He is dependent on us for activities of daily living which is hard work physically and emotionally but we are thankful for the progress he’s making every day.

We finished a bathroom remodel of taking out a bathtub and replacing it with a walk-in shower. This was a huge improvement so that he can be rolled into the shower much easier.

Getting out to familiar places in the community, church and visiting with friends have been important to him mentally. He gets frustrated with how his body and mind can’t do the things he used to so we try to keep him encouraged and active like he always was.

Some of the highlights and pictures since the last update are:

Night to Shine, Tim Tebow Foundation celebration event for those with special needs.

Dancing at the Greater Phoenix Swing Dance Club. Video of Hannah and Seth here:

Visiting his grade school and high school.

Looking through and adding his own pages of the scrapbook many of you helped put together.

March is Brain Injury Awareness Month. This month recognizes not only awareness of TBI’s from accidents, falls, concussions, etc, but from strokes, tumors, lack of oxygen, etc. Seth’s TBI included DAI (Diffuse Axonal Injury- the shearing/tearing of the brain’s long connecting nerve fibers from when the brain shifts and rotates inside the skull) and anoxic brain injury (when the brain doesn’t get enough oxygen). These severe diagnosis’ along with other things he went through are why we prayed for healing cell by cell. Since we’ve been home, we’ve participated in outings with We Move Forward-a local brain injury survivor and family support group and we have a membership at Ability360, an incredible sports & fitness center specifically designed for individuals with disabilities.

During that first month while Seth was in the ICU, We took Annabelle for a walk in the stroller and Hannah said, you don’t realize how bumpy the sidewalk is until you take a walk with a sleeping baby. I’m going to add to that and say, you don’t realize how bumpy a car ride is when you are in a wheelchair (fun fact: Seth’s power wheelchair is 429 lbs!)

Last year, Easter came 2 weeks after the boys’ accident and I remember it being an incredibly sad day for me. Seth’s body was hurting and we didn’t know what the next minute or hour or day or future was going to hold for him. The only thing we did know, deep in our hearts, was that God so loved Seth, that he gave his only Son that because Seth believed in Him, he would have eternal life.

Seth has been thinking about his faith a lot, asking questions like, Do I have enough faith? Did this injury make me lose faith? Has this injury made my faith stronger? I assume that he is looking for constant reassurance of God’s promise at the same time his body and mind are being tested. Please pray for peace that goes way past his and our own understanding.

One year ago, Ben was also affected and hurt in this accident. He is a walking miracle and I thank God everyday for sparing his life too, so please continue to pray for peace for him throughout all of this.

And lastly, prayers are needed for Seth’s cousin, Ellis in Malaysia. He’s experienced more seizures and the doctors are still figuring out the right medications.

-Darcy

Many of you have asked how we are doing and get an update on Seth since it’s been a while.

The past couple of weeks, Seth has had difficulty swallowing liquids as well as having digestion and constipation issues.

Monday, he had a Modified Barium Swallow test which showed a potential weakening of the swallowing muscles. The purpose of the Baclofen pump is to be more efficient in relaxing muscles and to help in spasticity so swallowing complications are an uncommon but understandable side effect. Right now, the Baclofen pump is set at 388.7 micrograms, delivering 16.2 micrograms an hour into his spinal fluid. It’s still a small amount considering some people can have their amounts in the thousands.

Fyi- deglutition, the act of swallowing, is such a complicated act, and requires split second timing and coordinated effort of dozens of muscles, the central nervous system, and five cranial nerves. What a marvelous process God created in us!

An esophagogastroduodenoscopy (say that 10 times fast) aka exam of the upper GI track will be done on 12/2 to see what else may be going on to affect his esophagus or other issues. After the results of this, we hope to have an official discharge date and be home very soon!

Sunday’s sermon message from Mark 2 was about four men that lowered their paralyzed friend from the roof to be healed by Jesus. Before healing the man, the first thing that Jesus did was to forgive his sins. It wasn’t to minimize the hurt of earthly or bodily problems as those might be temporary but the problem of sin had an eternity consequence and that was Jesus’ mission before anything else.

And in thinking of the men that carried their friend who couldn’t carry himself to Jesus; we should consider everyday a Thanksgiving for those in our lives who bring us closer to Jesus and carry us spiritually, emotionally, and even physically when we are weak.

For those wondering how things will be when he comes home, Seth will need a lot of help from us. He will come home in a wheelchair. He will need help in just about every aspect of daily living. He will need continued therapies for his body. He will need his family and friends to keep him motivated and encouraged for the next phase of recovery.

For all the prayer warriors here, please pray for a friend’s relative, Josh who had a golf ball sized glioblastoma removed from the center of his brain this summer. Recovery is long and tough in so many ways and we pray for strength and healing through this.

Also, an urgent request to pray for a young woman, Onnikka. She works on a ranch in Nevada and Tuesday she was in a horse wreck while working and has suffered significant brain trauma. She was life-flighted to a hospital in Reno. She just turned 21 last week. She has multiple brain bleeds and remains unresponsive. The brain bleeds are so deep they cannot drain them. The family is in the 72 hr waiting period which we know too well is terrifying and gut wrenching. Please be with those caring for Onnikka and for the life-saving procedures that she’s going through right now for she needs miracles upon miracles that only God can provide.

This has been a hard year for us and for many, many others. Life can change at a moment’s notice, so please take THIS moment to share these words with those you know:

I’m glad you’re in my life. You matter to me. Thank you for who you are. I love you.

To adapt Mother Teresa’s words- Simple words, but they leave echoes.

And for those going through anything and everything, we reflect that:

Love becomes more urgent.

Kindness becomes more meaningful.

Gratitude becomes more natural.

And the people we care about become even more precious.

(Author unknown)

I am thankful for all of you who have followed Seth’s progress, for hospitals and doctors and nurses and therapists, life, and continued healing cell by cell, neuron by neuron.

-Darcy

Today, Nov 3 has been exactly 7 months (214 days) since the accident. I haven’t shared any pictures thus far of Seth but I thought I’d post something from the first 2 weeks in the ICU before and on ECMO. Each minute and hour were critical and life saving decisions were made by the amazing doctors and nurses. Steadfast prayers and miracles have brought him through 5 weeks on 2 ICU floors, 6 weeks in an LTAC, and now 4.5 months at a brain injury rehab center. The progress he’s made in these 7 months have been quite amazing considering one doctor in the ICU told us he had “no miraculous intervention”. In hindsight I was upset that he said that but honestly, he was right; he didn’t have it, because only God could provide that.

Last Tuesday, we got word that surgery would be the next day. The Intrathecal Baclofen Pump surgery was done at 4 on Wednesday and we were back at Craig by 6:30pm. He is still in a lot of pain and because of his short term memory, is constantly asking why is back and stomach hurt. They will be doing the first increase of Baclofen today via-what I assume is- a smart phone that tells the pump what to do.

We are praying that healing from this surgery is the last step towards us coming home.

On Seth’s board is the quote, Seth, you’ve survived 100% of your hardest days, Keep going!

Specific prayers today for healing from this surgery, pain to subside and that there are no future complications.

Miraculous healing for all of our friends here at Craig.

Healing for Seth’s uncle, Jason who was in a bike accident yesterday and broke his clavicle in 4 places, 2 broken ribs, and has a small pneumothorax on the left upper lung.

Today is another day to give your family and friends a hug today and tell them you love them.

~Darcy

Thank you for being patient since my last update! Seth continues to work hard in his therapies.

A new one on the schedule is called Activities of Daily Living (ADL) where someone comes in to help him to brush his teeth, comb his hair, wash his face, things that we all take for granted, but for him it is to learn how to use his arms again with a purpose.

Every Tuesday is a Chill Program which is a group of young adults about the same age as Seth. Some are able to participate more than others but it’s a good way to connect and learn more about other’s interests and that they are not alone in their recovery journey. Last week they watched Seth’s dance videos– he is always happy to share those with anyone that he crosses paths with.

In PT, he was able to go on the Therastride treadmill which uses a harness to hold his weight and with the help from aids, help his legs to “walk”. It feels good to be upright and moving -psychologically, physiologically & physically. (Fun fact: Psychology refers to the mind, thoughts, emotions, motivations and behavior. Physiological refers to the internal functions of the body’s organs and systems and how they work at a cellular & molecular level. Physical refers to body structure, strength and abilities). All three of these are deeply interconnected and can either lead to negative effects or be a beneficial foundation for healing and thriving; something for all of us to strive for.

For those wondering, we are planning to come home mid-November. Seth said he is ready to come home and so are we. We look forward to seeing our family and friends again which will help us all psychologically while he continues his healing process with new doctors and therapists to help him physiologically and physically.

Specific prayers today:

For increased strength and use of his left side.

For Seth’s cousin, Ellis, who is back in the hospital in Malaysia with seizures and infection.

For Hailey, whose recovery has been brutal after SMAS surgery.

For Jacob, who needs extra BIG prayers for healing after a baclofen pump surgery.

Lord, be with them all.

-Darcy

Seth’s tendon lengthening went well today. Recovery will be about 2 weeks. Phenol was rescheduled for next week. In Recreational Therapy aka T-Rec, Seth played Yahtzee using an easy button to activate an automatic dice roller. He beat my score which is typical of him since he usually wins me in games. Everything in the T-Rec has accommodations for those with disabilities so that everyone can participate in games and activities.

The attached design was created in the 60’s for Craig hospital that depicts the “Broken Man,” a person injured and then made whole again. For the hospital, it “symbolizes the goal of rehabilitation at Craig – to help people with disabilities have meaningful lives following a spinal cord injury or traumatic brain injury.”

I think about this design a lot and if I could change one thing it would be to add a horizontal line to the vertical line to represent a cross. I think it’s a neat visualization that all of us are broken in sin but because of Jesus we are made whole again on earth and one day in heaven.

Today, I’m asking our prayer warriors to include some others we’ve met here on this same but totally different journey. I was granted permission to share some immediate details.

Luu is a 22-year-old beautiful woman who was in a motorcycle accident in March which led to a brain injury and craniectomy. Due to scheduling and other issues out of their control, she hasn’t been able to have her bone flap put back on for all of this time. Now, she’s developed hydrocephalus which means she will have surgery, Friday, 8/8 to get a shunt put in along with newly constructed bone flap.

Jay (name changed for anonymity) is a handsome young man also in a motorcycle accident experiencing a brain injury. He got a Baclofen pump the week before Seth and last week started not feeling good. Over this weekend, the site around the pump became infected and started going into his groin & side which prompted a trip to the ER. Sunday, he had surgery to remove the pump but now has to wait another 2-4 weeks to get it back in. Thankfully they caught & treated it quickly, so the infection didn’t go into his spine.

Please pray for healing miracles for Luu and Jay, strength for their families and expertise for all those that are involved in their care.

And of course, for Seth too!

-Darcy

Friday was a good day. Seth was fitted for a custom wheelchair and the therapist even took him and me on a little tour of the therapy rooms we will be at everyday. Participation by families is key to this program of helping their loved ones go through rehab, so eventually they will be teaching us how to do things like getting him into a chair and taking him to therapy ourselves. OT brought some glasses as she thinks they may help with tracking as he may be confused by having double vision.

Today, Saturday, was a rough day managing his pain, BP and HR along with bowel and bladder issues which are affected by meds he is on.

The Dr has scheduled a procedure called Intrathecal Baclofen (ITB) test for Monday morning. This screening will show whether he would respond to longer treatment with ITB therapy. This treatment injects the drug, Baclofen into the intrathecal space (the space around our spinal cord that holds the cerebrospinal fluid) to hopefully help manage his painful muscle contractions. Please pray for a successful test so Seth can get some relief.

I’m constantly amazed how remarkable the body and it’s systems of organs and tissues have special functions that intertwine with the others to keep our body alive every second. As you pray for healing miracles for Seth consider yourselves a walking miracle, too. Please watch this music video of being a Walking Miracle and how God can turn the impossible into possible. This one is staying on my hospital playlist.

On a related note, for those that were praying for Trey with us, I have wonderful news! His backstory is that Trey was life flighted to Phx due to a horse accident and arrived in the trauma ICU the day after Seth’s accident. Their family walked the same hallway and sat in the same chairs and cried and prayed for him as we did for Seth. Trey made remarkable progress, and was moved to the same LTAC at Select and then made the trip here to Craig for rehab; Seth basically followed in his footsteps. We are beyond thrilled that Trey got to go home June 4th (his mom said I could share their picture on his last day). We thank them for their advice and encouragement throughout these past couple of very stressful months.

Also, we welcome your cards or pictures for Seth!

ATTN: Seth Meyer

Craig Hospital

3425 S. Clarkson St.

Englewood, CO 80113

-Darcy

Seth had a decent 2 nights and day yesterday, most likely because the doctor increased his pain and BP meds even more. Even with that, propping him up on the edge of the bed or in a cardiac chair still increases his BP so they have to put him right back.

Keep praying for these 6 R’s – Reconnection, Repair, Regenerate, Relief, Responsiveness and Renewal.

Dear Lord, we pray for those that take care of Seth and the creative miracles that only you can provide. Reconnect each neuron to a new and improved location. Repair and Regenerate each cell, tissue, and organ in his body. Give him Relief from pain and the symptoms it’s having on his body. Allow him increased comprehension and Responsiveness. Renew his mind, body and spirit and bring him (and us) comfort and strength. Seth is completely in your hands, Jesus. Please be with him. Amen.

We are pleased to announce that Seth’s 11 year old cousin, Ellis, is home now (pix) He was admitted the the ICU on Easter Monday with encephalitis in Malaysia due to Scrub Typus, a tick born disease in SE Asia, along with another infection. His last seizure was at the end of May. They have changed his diet, sent him home with meds and will still consult with a neurologist but they are glad to be home after 6 weeks! We love you Ellis!

Last night and this morning were continued heart rate spikes and neurostorming. The good news is that the ventilator is officially out of his room (pix). It’s not enough extra room to do a cartwheel but in our hearts we are doing cartwheels of excitement for this.

Specific prayer for healing all over his body and that if the neurostorming continues, it’s because connections and cells and neurons are working hard on restoring him to be smarter and stronger than he already was.

I have a whole list of people that I pray for daily but here are a couple of updates.

Danita was moved to a rehab on Friday but ended back at the ER yesterday and is having surgery again today.

We are praying for the family of Frank who is in the arms of Jesus now. He was on the 5th floor with us and then came up to the 11th floor in the same pod as Seth.

Ellis is doing much better. Here is my sister’s update on him: Physiotherapists and occupational therapists have been coming every day to work with Ellis. They’ve been working on getting him to sit up, not clenching his fists, passing things from one hand to another, writing and coloring. He’s shown us that he can read and write simple things. He can remember and recall the names of things that are important to him, like his favorite cars and his friends, and song lyrics. Then there are other things he can’t remember that we show him pictures of, like the word for butterfly or elephant, and other random tidbits like that.

Our visits with him are really precious. He has this angelic look about him and big glossy eyes that look like they are staring into your soul. He has started asking questions like, “What happened in my brain?” And “Why do I have to be in the hospital for so long?” They’re really difficult and heartbreaking questions to have to answer. We’ve been reading books to him and reading Scripture. Tonight we prayed together for Seth and the other kids in the room. I’ve been telling him about the other children in the PICU and how he’s now the kid that has been in there the longest, of all the other children there at the moment. The 9-month old baby next to Ellis needs an expensive heart surgery that they can only do at a private hospital, which they don’t have the money for. A newborn baby came in a day or two ago, and 3-year old Eijaz, who was opposite Ellis for almost 2 weeks, just left for the PHDU yesterday.

There are only 4 beds in the PHDU and it is full right now, so we have to wait until someone transfers out. It is also possible that in an emergency situation someone will need Ellis’s bed in the ICU more than he does at this point, so if that’s the case they will shuffle patients around and he could also be transferred out that way. But we always hope that no kids will need to come into the PICU in the first place! But I want to pray that we can get out of the PICU soon so that we can be with him 24/7.

Prayers for a transfer out of the ICU as soon as possible. Brain and body restoration and rehabilitation And thanks for healing thus far.

-Darcy

Because Seth is doing so well, today they are passing Stage 9 & going to Stage 10 of weaning off the ventilator. Five days ago, he was on Step 2 so we are thankful he’s always been an overachiever!

This morning a few of us went to friend, Sammy’s graduation at ASU. To be honest, as happy and proud as I am for him and his future, my heart was sad because a month ago, we disenrolled Seth just weeks from the end of his freshman year at Grand Canyon University. All that went through my head was what Seth’s future was going to look like and would he be ever be able to have this experience that others were joyously celebrating today. I had a bit of a meltdown in the car on the way back and even though Kerry was as kind as could be to ask me what’s wrong, I responded in a snappy way (being tired didn’t help).

It was quiet after that, which made me notice her radio was quietly playing Christian music. I’m not sure if she or Ben heard it but it was the ending of a hymn with the comforting lyrics, “It is Well.. It is Well.. With My Soul.” I know that was a God moment- offered to remind me that God is not only with Seth but with me, and our family.

On another side note, my friend sent me a picture of a penny she found on a hike. Just another little reminder of “In God we trust” 🙂

Specific prayers:

-Continued success of weaning off ventilator

-For Seth to start responding to us

Darcy

Update for Seth’s cousin, Ellis in Malaysia:

His tube is out! He has a mask and a CPAP machine now which will help him transition between the ventilator and fully breathing on his own. He will be on this for a couple of days, slowly tapering him off.

This update comes with a plot twist – results from a test done two weeks ago (at Island Hospital) just came in and Ellis tested positive for Scrub Typhus. This is a tick-borne disease in SE Asia. The doctors would have never guessed this and it could be what triggered the encephalitis. Since the test was from 2 weeks ago, it is possible he no longer has an active infection, but they are going to treat him with the antibiotics that can treat this out of an abundance of caution. We’ve lived here 14 years and I’ve never been warned or concerned about ticks here!

Pray:

-For a smooth, uneventful (in a good way) next few days.

-As he comes off his sedation. So far he has been responding well, but we don’t know if or how much brain damage he may have suffered.

-For full brain/body connection + restoration