Category: Seth’s updates

Doctors told us MRI results showed a pocket of fluid around catheter. The next day there was a catheter dye study which showed that the catheter going into the spine hadn’t moved and the Baclofen was getting to where it needed to go. Then there was an appointment to extract the fluid. When the seroma filled up again, he had yet another procedure to put a drain put in. Unfortunately, the lab results of the fluid showed the presence of Cerebral Spinal Fluid which means that there is spinal fluid leaking through the catheter entrance point into his spine. They wrapped an abdominal binder around his torso to apply pressure to the site in hopes to promote the leak to close up on its own. In the meantime, we have to keep a close eye on his behavior and/or any pain or nausea as it might be an indicator that the leak is becoming harmful. There are other steps they can take to stop the leak but we hope they don’t have to go to those measures.

Hannah came in late Thursday night and here is what she shared of her time with us:

Friday- I flew in late last night so I surprised Seth in his room. He was thrilled! Mom and Seth went to the foot doctor in the morning where the staples were removed and he was casted for AFOs (Ankle & Foot Orthotics). One more week and they can do more weight bearing therapies, as tolerated. For lunch, Craig had food truck Friday! We said, “We’ll take one of everything!” The bummer of Friday was that the aquarium outing was cancelled for the second time at the very last minute due to the stat drain needing to be put in (it was cancelled the first time on his birthday due to some other health issues).

Saturday – This morning, we went to the T-rec room and made cinnamon rolls in the shape of an S (for Sethy, of course!) and made smoothies (Seth picked strawberry, banana & orange). Later, we painted on fabric where Seth drew shapes (heart, circle, smiley face) and painted his name (and drew masterpiece portraits of me and Ben) with a modified glove paintbrush. I also brought a skein of yarn to crochet a beanie for Seth (he picked the color). With half a skein left, I made matching hats for all of his stuffed animals which he and everyone got a laugh out of. It was also my first time spending the night in the room with Seth. I hadn’t been able to up until this point because I always had Annabelle with me (that’s right, she had a weekend with Dad this time! I missed her so much!) We both slept through the night fairly well and I can put it in writing that Seth says I don’t snore!

Sunday 8/22 – A day of rest. We watched church and gave Seth communion. We looked through the photo album made with love by friends and family. I left in the afternoon and will miss Seth so much!!

Please pray specifically for the CSF leak to heal on its own. For increased appetite and less fatigue. Thank you, God, for another day of healing!

It’s been almost a week since I’ve updated on Seth. Time flies by and stands still at the same time.

Thursday-Received Phenol injections in his upper front and back muscles. How I understand it is the Phenol solution is injected into where the nerve branches out into the muscle, damaging the nerve insulation, called the myelin sheath. This stops the signals which break spasticity (when muscles are too rigid or stiff) in hopes that new sprouting of peripheral nerves occurs. In layman’s terms, it damages the nerves to sprout new ones!

Friday-In OT, we worked on hand stretches. The tech told him, “You didn’t learn how to dance in one day. Just like using your fingers, it’s going to take practice.” Seth got to take an outing to a barbershop and get a haircut for the first time in over 4 months. The barber has his own recovery story of being in a motorcycle accident, so he knows how much such a little thing as a haircut is important.

Saturday & Sunday – No therapies on the weekend. They tell us it’s for resting up from the week, but I feel it just makes us more stir crazy. We watched church service on the tv. He sang along to the hymns and read along with the responses. Just like we are in the perfect place for recovery, we are in the perfect place in God’s hands. Seth had some friends, who were in town for a dance convention, come visit. It was good to see his face light up talking about dancing with them.

Monday – His left arm is now casted. It was brought up that there is a big lump on his back where the Baclofen catheter is. Labs look good so they don’t think it’s an infection.

Tuesday – MRI of his Baclofen site both with and without contrast. No word yet of his results. Seth’s best friend, Ryan, and his dad came to visit on their way to MN. They brought a McDonald’s double cheeseburger which made him extra happy. Those that have visited remind us of home and that is good for Seth and our family to have. We have been at Craig for exactly 2 months now. Dave and I are celebrating our 30th Anniversary today (along with Kerry and Jason, since we had a double wedding). It is said that marriage takes three-you, God, and me

Specific prayers today: Good results of the MRI. Prayers for Chris who we met in the MRI waiting room. He has brain cancer with an uncertain future. With Jesus though, his future IS certain!

And for those that don’t yet want to be prayed for, I’m still praying for you! 🙂

-Darcy

Seth’s team is amazed at his progress each day. If you know Seth at all, he is an amazing guy so this doesn’t surprise us. His right whole arm cast was removed after which the therapists connected his arm to an E-stimulation machine. This caused his arm to fully contract and extend. They focused on his bicep and triceps, but the machine can run up to 12 channels at once, allowing control of 12 different muscles simultaneously. This approach could be a powerful step toward helping Seth rebuild coordination in his arms and legs. Instead of being locked in a flexed position, his right arm can now be moved with ease by the therapists. He still has a cast around his fingers for a few more days, after which the team will begin casting his left arm. Although the casting process is extremely beneficial for Seth—helping to stretch and restore his range of motion—it is also uncomfortable. Please pray for comfort and relief from pain during this process.

Because we are with him around the clock, it can be easy to miss the changes, but Seth’s cognitive and speech abilities have improved remarkably. His short-term memory grows a little stronger each day and his quick wit cracks us up.

Seth took his first field trip out of the hospital to Andy’s frozen custard. The T-rec plans outings and activities for the patients and their families accompanied by a nurse and staff. This was the perfect outing for him because he LOVES custard-especially chocolate with peanut butter.

Darcy took a very quick trip back to Phoenix and with the help of Hannah, Anika, and Sammy, prepared a special meal to deliver to the first responders who were on scene on the morning of 4/3. We will forever be grateful for their courage, quick action, and compassion during such a critical time. Their dedication made all the difference — and we’ll never forget it.

Update: Luu’s surgery was postponed at the last minute but had it today and everything went very good! Jay is back from the other hospital and is on antibiotics for the infection he acquired in his baclofen pump.

-Ben

Over the weekend, Seth has more frequently been experiencing a lot of anxiety. These anxiety attacks consist of things he normally wouldn’t say, OCD, and confusion of his surroundings and about his past, present and future. We are told this is normal for brain injury patients and a part of the healing process.

Seth’s cast was removed and another one put on that extends his whole arm and fingers. The Dr has started the long process of weaning him off the Fentanyl. They increased the Baclofen pump another 10% and he got dry needling on the left arm today. His depth of breath is getting better as seen in music class. All his years in choirs and love of different types of music have been instrumental (pun intended) in this type of therapy. The movement in the top half of his body is getting much better and we are currently working on isolating muscle groups. Ankle surgery (tendon lengthening) and upper body Phenol injections are on Thursday.

The big noteworthy update mentioned last week is that Seth is now in a power chair. It has a joystick for us to drive and it will take a few days for us to get the hang of it as it is very touchy. We are hopeful for the day when he can control it himself.

We have started opening a few birthday cards a day in the times when he is feeling ok and are incredibly thankful for every single word of encouragement. You all are amazing!

The best part of today was the tech stayed to pray with us for a bedtime prayer.

Specific prayers this week are for increased purposeful movement in Seth’s body. Healing of his brain-cell by cell and neuron by neuron. And calmness of his mind.

Thank you everyone!

-Ben & Darcy

Tuesday 7/29 – Seth had his 19th birthday today. After a very difficult weekend, he was still not feeling well, so most of his therapy sessions and special activities were cancelled. By late afternoon, he felt well enough for about an hour to attend a birthday gathering in the cafeteria. His nurse, also named Hannah, was so kind to help reassure Seth and us that she would be there for him in case he needed some help. Grandma Treece had mailed decorations and Anika, Slash, and I (Hannah) helped set up with Crumbl cookies (thank you, Judy!), brownies, Aussie Bites, a veggie tray, and lemonade. Several members of his nursing and therapy teams stopped by, along with other families we’ve met who are also here with their sons and daughter with traumatic brain injuries. It was incredibly moving to see everyone come together in support of Seth. We never imagined celebrating his birthday in a hospital, but we’re grateful to be here, together, safe, and surrounded by care. It’s more than just his 19th birthday, it’s a true celebration of life, miracles, strength, and gratitude for every moment we have together.

Since the day did not go as planned, Seth did not have the energy to open over 50! birthday cards and gifts that were sent. Thank you so much to everyone who mailed something to make his week feel special. We will be going through them over the next few days. We even got a big box of kettle corn (thanks, Maryn!) to share with the team taking care of him.

Wednesday 7/30 – Hannah, Annabelle and Anika left today and Ben came back from Phoenix. Seth was feeling better today and was able to eat some applesauce and some dinner. He hasn’t been able to hold anything down since Sunday, so it was nice to see him perk up. The tendon lengthening surgery has been postponed until 8/7. Monday, he got a new cast on the right arm to help stretch it out since it’s been contracted up to his chest for a long time. Tomorrow, they will take it off and put another one on for an even bigger stretch. Today was also another music therapy session. He and the leader sang Barbie Girl together. She said it was the first time any one has asked for that song. Another amazing thing he started doing was whistling. We are so proud of you, Seth! Every day is a healing day! Our next post will include an interesting update, so stay tuned!

-Hannah and Darcy

The past few days have been pretty rough for Seth. Friday started off with a Baclofen pump increase, tilt table, arm splint fit, and transport to the connecting hospital for a consult with an orthopedic surgeon for tendon lengthening (this Wed). He threw up his breakfast and meds 3 times with the last time, causing a Code Blue to be called, which is the color that Seth’s face turned due to choking on his vomit. Thankfully, Aunt Kerry was there followed by the awesome nurses and supporting team to take care of him. Stat CT, labs, EEG, and EKG all were ok. They put an IV back in to start him on fluids. We are thinking that the increase of his Baclofen pump might have caused the nausea and headache. Saturday, he had an X-ray to check for any bowel issues (all good) but stayed in bed and slept a lot. Today, he looks like he’s feeling better, so we will try and get him up in the chair and slowly start food again.

Wednesday, we had a home modification meeting with the PT and OT to talk about what accommodations need to be made when we bring Seth home in a wheelchair. This includes thoughts about transportation, lifts, ramps, bedroom and shower modifications and more. Fun fact, for every 1 inch of steps, we need 1 foot of ramp to have a safe and accessible slope.

For all of us there will be a time when we are ok until we are not ok. What modifications would your life need as you anticipate Jesus bringing you home?

Specific prayers today that Seth gets his energy and appetite back and as always, healing within each cell and neuron in his body and brain.

~Darcy

Seth had his first music therapy class which he was given a harmonica to help with breathing exercises and he knew the lyrics to a song that the therapist played and sang along with her. As opposed to the physically and mentally demanding PT, OT and Speech, this therapy is way more fun but yet gives a whole brain workout.

The Baclofen pump and Botox are helping. On Thursday, the plan is to get a temporary cast on the right arm and a splint on the left, to help stretch out the muscles so he can be more comfortable.

For those wondering, Seth’s brain is in a waking up period. When we arrived at Craig Hospital he was labeled a 3 (out of 8) on the Rancho Los Amigos Scale, which determines the level of cognitive functioning. Now he’s between 4-5. I tell him every day is a healing day!

Seth is in a state of post traumatic amnesia called anterograde amnesia, which refers to the inability to form new memories or have a hard time remembering current things after the accident, while still being able to remember things from beforehand. The doctor says the brain is trying to protect itself–maybe as a kindness to himself.

He was cleared for a level 6 diet which is small & bite-sized foods. Just last week, he was cleared for pureed foods, so this is a wonderful step. His first trial of level 6 today was macaroni and cheese (good choice, Seth!)

We’ve already received some birthday cards and are saving them for next Tuesday! Thank you everyone!

-Darcy

Seth’s pump started giving him 100 mcg of Baclofen after his surgery a week ago and it’s been increased an add’l 20% twice which makes it 144 mcg. A handheld device is put against his abdomen which programs the pump to give the right amount into his spine in a 24 hour period. Thursday is a spasticity appointment to determine Botox and/or Phenol injections into some extremely contracted muscles.

Tuesday was a big day! Seth’s trach was taken out AND he was given the green light to have pureed foods for his meals! (He’s still being given a special formula via tube feed for extra calories.) He also did a good job on the tilt table (twice before it was unsuccessful due to his high BP). We played some of his favorite music that we could tell he was singing along with.

Thank you for checking on his progress. Each day is a healing day!

Specific prayers: Pray for good results of the pump and injections so that he can start using his body and can taper off some of the other meds he’s on. Please also pray for little Baby Beckett and his parents. He was born early and is in the NICU in Phoenix. Jesus loves you Beckett!

-Darcy

It was good that there were no therapies this weekend since Seth is still recovering from surgery, He’s been in some pain so he stayed in bed most of the time. We were able to take him to the garden today for some Vitamin D. They will increase his Baclofen dose in the pump tomorrow.

Seth continues to WOW us everyday. Even though it’s just a whisper, he will tell us where he’s hurting. When Dave adjusted his head, he said, “Good job!” He recognizes people and pets. He responds to comments such as us saying, “Ben is in the cafeteria,” and he answered, “That’s not unusual.” He even asked to order a pizza and wanted to see his car. After I prayed with him over his cramping foot, I said “God’s got you,” in which he responded, “I know.” Even through the daily struggle, he is still polite and kind and witty.

We’re collecting birthday cards for Seth’s upcoming birthday on July 29! If you’d like to help make his day extra special, please send a card to the address below. For those that have sent him mail already, thank you! Every note, drawing, or kind word means the world as he continues his recovery.

Mail to:

ATTN: Seth Meyer

Craig Hospital

3425 S Clarkson St

Englewood, CO 80113

Pix attached: For those that remember a previous post about seeing therapy dogs at the hospital in AZ, today I saw a therapy cat! Waffle, our bunny needs to step up her game!