Today, Seth is moving to stage two on the ventilator. There are 12 stages of weaning the ventilator off, but can be anywhere from a 6-12 day process depending on how he tolerates it. I know stage 2 doesn’t sound exciting, but to us it’s a huge milestone!
Hannah put pictures back up in Seth’s new LTAC room.
I stopped by work yesterday, and talked with a someone whose son had a disability so he understood the hospital scene and family dynamics of taking care of a loved one. We talked about how surreal it was that when we walk out the hospital doors, it is life as usual for everyone else. We’ve been granted a new perspective on things, some heartbreaking and some comforting. God, on the other hand, has perspective on everyone and everything-past, present and future. That’s probably why the Bible is filled with verses of how much He loves us and takes care of us in our day-to-day normal lives or when we are in crisis mode or when we are celebrating in heaven.
Your homework today is to tell at least 5 people how much they mean to you.
Specific prayers today:
Success on weaning off the ventilator
Little and big miracles to start following commands
An update on some others we’ve been praying for:
Thankful for: Ellis’ lumbar puncture showed no signs of infection!
Trey to be leaving for a more extensive rehab center!
Seth’s MRI from yesterday showed no change from the previous one. The good news is no abscesses from bacterial infection were seen in the brain.
Around 4pm he was moved from the Medical ICU to the Long-Term Acute Care (LTAC) facility. It is a specialty-care hospital designed for patients with serious medical problems that require intense, special treatment for an extended time.
We are thankful for all the doctors and nurses and literal teams that took care of him in the ER, 4th floor Trauma ICU, 5th floor Medical ICU, and now LTAC. We are forever grateful for each and everyone of them. (Fun fact: It’s National Nurses Week right now)
Whatever your profession is be encouraged to view each day, each joy and each trial, as being part of God’s bigger plan for your life and the world.
My cousin, Ashley, shared with me, God has a sovereign plan. We sometimes have the opportunity to be a part of it.
-Darcy
Picture is of Sophie the therapy dog I saw today. So cute!
Yesterday I had asked for prayers for poop (gross, I know). An x-ray of his belly was done to make sure nothing was blocked (its been 4 days since his last BM). Prelim results said there was no blockage but looked like a lot of gas. They stopped his tube feed for the night in hopes that helps get things moving.
Early this morning, Seth pooped twice (yay!) but he also threw up twice (not-yay!)
8:00am Dr noted from X-ray there may be an ileus, a lack of movement somewhere in the intestines that leads to a buildup and potential blockage of food material. (Fun fact: our intestines are about 28 ft long!) They will be suctioning his stomach to relieve any pressure of the build up of gas or liquids.
MRI still hasn’t happened to see if Nocardia is causing brain abscesses. It’s been almost 24 hours since it was ordered (ugh!)
If you would like one of the awesome bracelets that say “Prayers for Seth” contributed by friends Jeff and Sarah, please message one of us and we will send you one or more (for free of course). Picture is of friends showing off their bracelets. Upload yours to our photo collection!
Specific prayers:
Fever and physical relief, good MRI results.
Healing and comfort prayers for Ellis, Trey, Silverio, Danita, Ranjini, Janelle, Frank, Joyce, Sam, Caleb, Vincente, Jesse Jr, Derek, Lindsey, Betty, Steve, Anna, Michael, the families of Todd & Lex.
These are many of the families we’ve met at the hospital, each with a different story, different care, different prognosis. The thing that is NOT different between us all is our God that created and holds the earth and universe together, is the same God that knows us before we were born and continues to love and hold us in His hands. We trust in His promises!
Infectious disease Dr just came in. Mystery disease, Nocardia likes to cause small abscesses in brain so Seth will get another MRI with contrast (the first one not done with contrast). This will help determine what treatment needs to be done. Depending on schedule of MRI, moving to rehab, Select may (?) happen tomorrow.
Also, we need to pray for poop again! I’m sure when this is all over, he will appreciate how you all are praying for that. 😁
For those following our nephew Ellis, here is his update (Picture is of their family):
6:25pm update – We met with 5 doctors, including GH’s three pediatric neurologists, today. Dr Vicki, who we just met at this meeting, is the head of pediatric neurology for all of Malaysia.
The brief synopsis is that Ellis is still having seizures. The lumbar puncture is off the table for now, but they say they that are already giving him everything they can even if they knew the results of that test. He will be receiving a new more aggressive seizure medication and will be starting a ketogenic diet – high fat and lower carbohydrates is supposed to be beneficial in these cases. He has had a fever so they put on a cooling blanket to lower his body temperature (in addition to antibiotics for that). What all that means is more waiting and more praying.
I’m sure you’re all tired of reading updates. I’m tired of writing them. For today, the prayer requests remain mostly the same:
-For the new meds to work quickly
-For the seizures to end and not do damage to his brain
No big events the past 24 hours. Occasional fever keeps being an issue. The antibiotic, Bactrim, is not responding to the mystery lung bacteria confirmed as Nocardia, so the pharmacy will come up with something else. He’s been given a bit of insulin a couple times when his blood sugar gets too high.
Dr looked at the wall of pictures and commented he is glad we are all here for him.Tomorrow is still the plan to go to the step down unit in Tower 2. Seth has made such great progress while he’s been here and we are ready to help him move on to the next step!
On the morning of the accident, 4/3, one of our church members also ended up in a different hospital due to previous falls and brain injury. Over the following days, his wife and I were texting because our “men” were in the ICU, or intubated or awaiting CT scans at the same time. Even though our situations were different, there was comfort and encouragement between us since we both knew how we were feeling. Denny passed away on 4/21 and his funeral was yesterday. The sermon was about Denny being amongst all the others that went before him rejoicing around the throne of God. The final hymn was “Go, My Children, with My Blessing” -which is such a God thing because I was going to make a post about this specific hymn.
I’m one of those moms that saved A LOT of art work from my kids’ elementary school days. I can’t remember how long this one has been hanging on my pantry door but it has been there a long time! It must have been a memory work assignment of Seths (you’ll notice his initials in the corner).
It’s a comfort to me that Denny and Seth and all of us are given this same promise: Go, my children, with my blessing, Never alone.Waking, sleeping, I am with you; You are my own. In my love’s baptismal river. I have made you mine forever. Go, my children, with my blessing – You are my own.
-Darcy
PS, For those that remember my post about sweatshirts needed for the 9th floor patients, Denny’s wife gave us his sweatshirts to be of good use to others. ❤️
Seth had a good night. X-ray looks good so he will get remaining chest tube out. BP & HR pretty good. At the moment his fever is down but still an issue.
I woke up from a dream that the mystery lung bacteria (besides the Valley Fever and Staph) was finally figured out and was called Harvest. About 10 minutes later as I was telling the nurse about my dream, Dr came in to check on him. The mystery bacteria is confirmed to be Nocardia, a type of bacteria that is found typically in standing water, decaying plants, and soil. Now they just need to figure out the sensitivity of it to determine what antibiotic will help.
It’s another healing day! Cell by cell. Neuron by neuron.
I’ll leave you with this beautiful song to reflect on today. I appreciate the music that has been forwarded to me. I have a hospital play list with them all for Seth.
Today is another healing day. Cell by cell. Neuron by neuron.
I’d like to make this update a public service announcement for those with children over 18. Please be proactive and have them sign a Healthcare Power of Attorney, Living Will, and Mental Power of Attorney.
Seth signed these forms in January and without them, we, as his parents, and him being over 18, might not have been given power to make medical decisions on his behalf or be able to access his medical records. On the morning of the accident, I grabbed the forms on the way out the door to the hospital. As I was putting them in a bag, I prayed out loud asking that his condition wouldn’t be serious enough to use them, but also thanked the Lord that we had them ready. I never thought we’d use them but I’m relieved we were prepared.
Each state may have their own forms, but Arizona’s forms can be found on the AZ Secretary of State’s website (You can choose to register them or just keep them for your own records).
A Financial Power of Attorney would be a good one to add as well. 🙂
Being spiritually prepared is what the passage Luke 12:40 talks about. “You also must be ready, because the Son of Man will come at an hour when you do not expect him.”
A Clay Jar publication author, Ed Jarrett writes, What if, instead of warning you, Jesus just knocked on your front door and invited you to move to the place he had prepared for you (John 14:2–3)? Would you jump at the opportunity, going without hesitation? Or make excuses why today would not be a good time?
The truth is, we do not usually get any warning. Instead, we are told to always be ready. That does not mean I should sell everything and sit on a mountain waiting for him. It does mean that I should live each moment as if, in the next moment, I might be standing before him.
Always be ready, looking forward to that day when he takes us to be with him forever.
Seth still had a fever overnight. His remaining chest tube may be clamped today and his BP meds adjusted. The PEG tube looks good so they will start feedings today. Seth would ask for double cheeseburger or Raising Canes flavor, if he could.
Did you know that today, May 1st is National Day of Prayer?
Since my sister is overseas, they have their own way of updating Ellis’ condition through Whatsapp, and we can see how their friends and family are praying for them. One church in Malaysia did a prayer walk though Penang pouring their hearts to God for healing for both boys. Another group included 75 members of his uncle’s Nepali ministry fasting and praying. When Seth visited Malaysia, he attended one of their meetings.
We are thankful for ALL of you that continually pray with us here in AZ, all over the states, and all over the world.
Specific prayers on National Prayer Day:
-Seth’s fever & BP to subside and be able to communicate with us.
-That Ellis’ seizures will permanently stop so he can get a lumbar puncture done.
-Healing for their brains- cell by cell AND neuron by neuron.
-Healing and God’s comfort for Trey, Danita, Jesse Jr, Ranjini, Janelle, Caleb.
-All the doctors, nurses, and teams involved in everyone’s care.
For those that aren’t believers in Christ or think prayers are just words and can’t help, ask what is the alternative? Our short lives here on earth may not end up how we or our families want them, but God gives us hope of an everlasting peace that is beyond our human comprehension. He is our loving Father, Creator, and Sustainer, both on earth and in heaven.
Phil 4: 6-7 Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
It was a big day for the Meyer family. Through the peaks and valleys, we are leaning on faith in God to help get them through this storm.
We toured a different tower and floor in this hospital that has a “clinical illness recovery hospital” to help bridge the gap between ICU and a rehab. The soonest they’d move Seth is early next week. It’ll be a good transition we think, but difficult to think he won’t need the intensive ICU unit after what he’s been through.
We also had a meeting with all the teams, including the neuro doctors about Seth’s MRI results. His results are better than what they were expecting, given his injury and his initial CT scan. He has a grade 2 injury, which means his corpus callosum is affected, which connects both hemispheres of the brain. Essentially there is a disconnect between the right and left side of his brain. This gives the doctors information why he is not responding and also how we can better help him recover. His brain stem that affects his consciousness, his processing centers, among a lot of other things were not affected either, so that is also very reassuring.
That is the good news of it all. He will have a long and hard recovery, and we won’t know exactly what that’ll look like. With his young “plastic” brain, the doctors said they are cautiously optimistic that with intensive therapies and rehab, it is possible for him to relearn a lot of the things he used to do automatically like with his speech and cognition.
His lungs are still operating fine being off the ECMO, and his spleen should continue regenerating.
Seth also had his PEG tube placed this afternoon which went well, so that is where his tube feedings are going through. He looks much more comfortable. We give God all the glory for His hand and big miracles in all of this. Thank you for your continued prayers!
At this beginning of all this we prayed to God asking if it was his will to move mountains for us. We have seen first hand that he has been answering our prayers cell by cell and we continue to pray that it is his will to continue to move even more mountains. A verse that we hold dear to our hearts is Psalm 46:10a “Be still, and know that I am God.
A reminder that God has plans far greater than we realize both on earth and in heaven.
Please continue to pray for our nephew Ellis, that he remains seizure free so they can do the further testing they want to do, and that his brain is fully healed!
Last night: Seth is more medically stable. He has one nurse that takes care of him and another patient instead of the 2-3 per shift he had only for himself when he was on ECMO. He is tolerating being just on the ventilator. They are able to do less frequent pupil checks and labs, so hopefully he’ll get better rest. He is still on Dilaudid for pain, a muscle relaxant to help his muscles relax, and another medication called Gabapentin for his teeth grinding (which the nurse thought was helping).
This morning: Seth had a good night. His nurse said that she had to hold his BP med through the night because it was on the lower side. Only this morning did she have to give him some after he had had his bath. He feels warm, but his highest temp last night was 37.4. There is not a chest xray ordered today. The nurse said they may not do it every day now. They had to when he was on ECMO to check his cannula. His Heparin has been off since yesterday evening because of the PEG tube procedure today (this will be in place of his NG tube), but the plan is to resume it after that.
We are planning on meeting with the neurologists today to go over his MRI results.
Happy to report there is not much to report!
Today is a day that the Lord hath made, let us rejoice and be glad in it! We will conquer whatever questions, uncertainties, and little giants we have to today. God is on our side, and loves us all ❤️!
Pray for….
-Clear answers where to send Seth after the ICU
-Clarity about his MRI results
-Rest and healing for Seth’s brain and body
-Continued management of his BP
-Peace for his family knowing that God is the one in control of everything.
Aunt Kerry
Ellis’ update:
Ellis is on a continuous EEG monitor and the results are almost the same as yesterday – still instability in the left side and some of the back of his brain. He is very sedated and has been otherwise stable for the past 24 hours since he was transferred here. They want to do a lumbar puncture on him to get more definitive answers about what is going on in his brain, but he needs to have been seizure-free for 48 hours before they do that procedure. A CT scan is also a possibility soon. The plan is to begin lowering his sedation which would complete the 48 hours of brain rest – but that might depend on any seizures between now and then.
Pray for:
-No more seizures
-A lumbar puncture able to be done
-Continued rest for his brain
-Pray for his brother, Jesse, as he is having a hard time.
-Pray for the 1 year old with heart problems that Erin met
-Pray for the 2 month old baby in the bed next to Ellis (this is a government hospital and so he doesn’t have a private room).
I greatly appreciate all the messages that are there when I wake up, throughout the day, and that come in as I lay down my head. These keep us strong and our eyes upon Jesus. This one was sent to me this morning. It doesn’t only apply if you are sitting next to a loved one in the hospital; it’s for whatever you may be going through, the smallest worry or the greatest despair.
“The peace of God be with you today. Waiting. Patiently waiting. God is there. He knows. He sees. He hears. He loves. He saves. 🤍
John 16:33 I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
