Seth will be leaving tomorrow for Craig Hospital in Englewood, Colorado. He will be admitted into their LTAC (Long Term Acute Care) which we pray leads into their Disorder of Consciousness program. Craig is a world renowned hospital that specializes in neurorehabilitation and research for those with brain injuries and spinal cord injuries. We pray their expertise will help Seth recover faster. Darcy will go with Seth on a special medical charter flight. Dave will either drive or fly up a day or two after and Ben will follow in a week or two.
Please pray for safe travels and for Seth’s healing in this new facility. We know God is with us wherever we go.
Today is another healing day, cell by cell, neuron by neuron, and step by step (as mentioned by a fellow dance friend).
I feel like Seth’s storms seem to be a little less frequent, but his body is routinely, and as needed, filled with meds to control pain, blood pressure, heart rate, muscle relaxers, laxatives, and low grade fevering.
He still needs your prayers to get through every single minute.
For those wondering, there is someone with Seth 99% of the time during the day and 100% of the nights there is someone that sleeps on a chair that extends into a sort- of-bed next to him. Unlike the day limit of 2 people in the room at a time, the night shift is one person and can be nerve-wracking sometimes. Although it’s much less chaotic than the first month of being in the ICUs, they are not relaxing nights. Every night Dave and I pray Luther’s evening prayer to Seth, which includes “Let thy Holy angels be with us, that the wicked foe have no power over us.” One of the early pictures we brought in to the trauma ICU room was a picture of an angel over a hospital bed that I found on Pinterest*. I have no idea what angels look like but I thought this one at least helped me vision this prayer a little better.
Through my faith and what I know Seth’s faith is, I have no doubt that God is with him through all of this, 100% of the time, because He tells us, “I am with you always, to the end of the age.” And that’s a promise I will hang on to.
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!
This morning, Seth was put in a cardiac chair for a few hours while he and Dave watched church online. That was good news since his BP and HR didn’t tolerate it for the past 4 days. Tonight, he’s needed some extra meds to control these so please pray for a peaceful, restful night, for the storm in Seth’s brain to calm and for signs of increased responsiveness.
We are so blessed to have such a wonderful support system of family and friends of Seth’s, but also those that have never even met us or him but continue to stay updated and pray.
Today, 27 family and friends gathered at Seth’s alma mater (thank you, ALA!) to decorate 65 pages for his memory book. We’re so grateful for everyone who joined us and also for those who couldn’t make it but still sent in pages. Everyone brought so much creativity, and even people who had never scrapbooked before made amazing pages. We hope to scan them all so everyone can see, because every single one is extra special to us.
We may do another scrapbooking day later this summer but you can also make pages on your own time. Feel free to use your photos of Seth or grab some from our shared Google Photo Album
For those who don’t know, Seth and I (Hannah) have a photo booth business, so I brought one of our booths to the event and we recorded video messages for Seth. We’re putting them together into a movie he can watch. If you’d like to be part of it, your message will be a bright spot in his day and a voice he’ll be so happy to hear. Please film your video horizontally and speak from the heart. Whether it’s funny, sweet, serious, or simple, it all matters.
Need ideas? You could:
Share a favorite memory with Seth
Tell a silly or fun story
Say something you are praying or hoping for
Describe Seth in one word
Let him know what you’ve been up to
Say what you’re excited to do with him again
Thank you for helping us fill his days with friendly voices and love. You can upload your videos here.
I’m going to start with specific prayers this time. Please pray that Seth’s pain, neurostorms, high BP and HR subside.
It’s been a rough couple of nights and days. It seems like a little progress forward and then progress back.
Today, I went though all the cards, Bible verses, notes and super cute pictures we’ve received from so many of you. These comforting words and encouragement were needed in the beginning and still applicable now in week 9.
One such set of notes was from a 7th grade class in NV that has been praying for Seth and Ben. I love all their messages but one had a picture that has been on my mind all day. Seth’s grandpa is a doctor and I know he would agree with it too.
Seth continues to fight, making small but meaningful improvements each day. Yesterday, the speech therapist came by to test his eye tracking. She slammed cabinet doors and played a few rounds of “peekaboo” with him—and noted some progress. He’s started looking to his left a few times a day now, which is huge, considering that’s something he’s hardly ever done before.
We’re also seeing more facial expressions from him lately. My personal favorite is when his eyebrows furrow and he looks angry—probably because I (Ben) had the nerve to put on the Bee Movie for the tenth time. I can just imagine him thinking, not this again.
His blood pressure and heart rate are still being managed with dermal pain patches and a not-so-fun cocktail of medications. But even amidst all that, Seth hasn’t needed to use his trach for breathing these past couple of weeks. It’s been capped off and he’s been breathing on his own through his nose, with just a bit of oxygen support. The pulmonologist wants to keep the trach in place for now, just in case, until Seth becomes a little more responsive.
Another encouraging sign—Seth has started making facial expressions in response to pain. As difficult as that is to see, it’s actually a step forward, since he hadn’t really shown those kinds of responses before.
I remember back in the ICU when the team was worried because he wasn’t sleeping at all. Now, the medications he’s on are helping him sleep around 80% of the day. And honestly, I’m thankful. His body and brain need that rest to heal, to rewire. He’s getting the relief he needs.
God’s got you, buddy.
In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety. Psalm 4:8
-Ben
You’re invited to help us create a memory book for Seth! We’ll be making scrapbook pages filled with love, stories, and photos to share with Seth. Join us on June 8 at 2pm in the ALA gym lobby. Snacks and supplies will be provided. Feel free to bring your own pictures. Please RSVP to one of the Meyers if you plan to come.
Seth has been doing well during the night and day with the adjustment of meds for pain and muscle relaxers. They sat him up in a chair for a couple of hours yesterday. A special cardiac chair is used to help with circulation. Today they put him bedside but they set him back down because his BP was rising. We know he is still neurostorming by the symptoms that he experiences: high heart rate and blood pressure, sweating, rigid muscles, abnormal posturing and fever. It can last for minutes or hours.
We don’t know what triggers it but can include changes in meds, being uncomfortable or repositioned in the bed, or from environmental stimuli (loud noises or alarms)-which is why we’ve had so many no or low-stimulation days.
~Please continue to pray for healing of body and mind. Please pray for those that take care of Seth and keep him safe and stable.~
On Apr 28th, Seth was taken off his ECMO* machine. We are thankful for the technology and care he received for the 19 days he was on it. In my opinion, this was one of the most frightening periods of Seth’s time here. It was the last medical option that could be done for him.
Our friend, Sammy, shared the story of his Pastor and wife’s heartbreaking story of their newborn daughter being placed on ECMO because of a viral infection and complications.
They said goodbye to their 10-day old, sweet daughter, Child of God, Gemma, but in the depths of their grief, Gemma’s mom started a non-profit to provide comfort and practical care items to families whose children are on ECMO at Phoenix Children’s Hospital. I’m sharing this with you because so many of you provided us with such items while Seth was in the Trauma & Medical ICU’s and we feel blessed beyond words how much this helped us.
Please learn more about Gemma’s Relief Project and how they help other families during such critical and uncertain times with their children. https://gemmasreliefproject.org/
-Darcy
*ECMO, short for Extracorporeal Membrane Oxygenation, is a life support system that provides temporary support for the heart and/or lungs in critically ill patients. It uses a machine outside the body to take over the work of the heart and/or lungs, allowing them to rest and potentially recover.
Seth’s doctor adjusted his pain meds with an additional muscle relaxer. This will be a try it and see what happens-kind of thing to get his BP and HR under control. The doctor said he can tell he’s in a lot of pain even down to his toes. He slept a lot today. The OT assistant reminded me to keep talking to him, tell him about our day and what’s going on, play music and read to him. He may be confused what is reality or what is a dream.
I pray that Seth’s dreams are peaceful. Wouldn’t it be awesome if his dream is one like Jacob had, watching angels going up and down a staircase to heaven with Jesus at the top, saying, “I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you.”
On the day of Seth’s accident, I asked a friend to bring me a notebook so I could keep track of what was going on (thanks, Claire!) Pages were filled with minute and hourly reports of vital stats of ICP, PO2, SP02, HR, BP, sodium levels, meds, X-rays, CTs, procedures, nurses he had, doctors that stopped in, visitors, food that friends brought, etc. There are very detailed and well written accounts but my notes seem to be my own version of shorthand and sometimes was just a couple words because I needed to go on to the next point. It’s interesting to look back on where he was 8 weeks ago to where we are now. Another day, I’ll talk about some of the miracles we’ve experienced and how much he really has progressed.
We are on our 2nd notebook now. The notes are much shorter because there’s not much more to report other than he’s still battling neurostorms and pain which are causing the high BP and HR. Please continue to pray for relief, regeneration, and healing.
I walk by this sign several times a day and continually think of all the people written in these notebooks (and many, many more that aren’t written down) who had a part of keeping Seth alive and keep our family supported and encouraged. I hope they (and you all) know how much we are forever grateful. This sign not only applies to nurses, but every human being; and it means to me that our attitudes and actions can significantly change someone’s life and leave lasting impressions even when we don’t realize it.
There was a water leak in Seth’s room, so he was moved to a new one. At first, we weren’t too excited to pack everything up and relocate, but this new room feels bigger (or maybe the layout just makes it seem that way) and it has a view of the helipad. We’ve been trying to catch a glimpse of helicopters landing or talking off these last two months.
One of the things I enjoy is hanging up the pictures in Seth’s room. We have so many now that it takes over an hour to get them all up. When Seth is awake, I show him the pictures one by one and tell him the story behind each one.
While putting them up this time, I was struck by how many rooms these same pictures have been in. Many still have bits of tape from the TICU room, the MICU room, the first LTAC room, and now the second LTAC room. It reminded me of Joseph’s story in the Bible. His life took him from the pit to Potiphar’s house, then to prison, and finally to Pharaoh’s palace. Many of those places were not of his choosing and may have seemed like a step backward, but God had a plan. Each place prepared him for the role he would eventually play in saving thousands from famine.
We believe God has a plan for Seth too. No matter how many rooms he may be in, God knows the full story. And someday, there will be a room prepared just for him and for each of us. Not one with tape marks, but one built to be our forever home.
Right now, Seth’s brain needs time to heal. There is not much the doctors, nurses, or we can do aside from managing his vitals while his brain goes through this storming process. What we can do is continue showing him love and providing gentle stimulation, always under the careful guidance of his care team.
We are allowing visitors who are close to Seth to see him, hoping to jog some of his memories. If you would like to visit, please text one of the Meyers so we can coordinate a time. Neurostorms are unpredictable, so if we say no to visitors that day, please don’t take it personally. We also ask that no one show up unannounced.
If you would like to send a video message instead, we would be happy to play it on Seth’s TV. Just send it to one of the Meyers.
Lastly, we’ve filled the room with everything we need. While we are so grateful for the gifts, we kindly ask that no more be sent at this time. Printed photos are still welcome and appreciated.
You’re also invited to join us for a special event as we create a memory book for Seth on June 8 at 2pm in the Arizona Lutheran Academy gym lobby. We’ll be making scrapbook pages filled with memories, stories, and photos that we can read to Seth and bring with us to rehab. If you have printed photos of moments with Seth, please bring them along. We’ll also have a selection of photos available for those who don’t have prints, along with supplies like paper, scissors, and glue. Snacks will be provided, and everyone is welcome. Please RSVP to one of the Meyers if you plan to attend.
If you’re not in town, you can still be part of the memory book by mailing us your 12×12″ scrapbook page. Be sure to use a stiff envelope so it doesn’t get bent. Text one of the Meyers for the mailing address. We can’t wait to see what you create.
Thank you again for your love and support. We feel it every day, and we believe Seth does too.
