Author: benmeyer

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!

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

-Endurance and perseverance for us

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!

Seth is continuing to fight and is showing Gods presence once again. His ECMO machine has been on the lowest possible setting for almost 24 hours now. This means he has been breathing adequately on his own with the help from the ventilator. If his blood gases continue to be in a good range, the surgeons will start thinking about removing the ECMO machine and possibly one of the chest tubes. His blood pressure continues to be a balancing act, but is closely monitored and treated by his very talented nurses and doctors. Cell by cell. Prayer by prayer.

-Ben

As we anticipate Seth being taken off the ECMO soon, he will be getting his first MRI. This will give us a better look at the extent of his brain injury. Please, please start praying for good news on the scan and for his brain to heal. The doctors keep reminding us there are a lot of unknowns in Seth’s recovery. But we know that God knows what his future holds. All of Seth’s days (and our own days) are in His hands. Something I read today says it perfect: We have nothing to fear and everything to hope in because of Jesus.

-Darcy

PS, For those that want some interesting facts about the wonderful brain that God created, check out https://answersingenesis.org/human-body/brain/?srsltid=AfmBOophQbYBls29at_hk-B4nlj8pgo1YZN88NuYF9x_GVbl6McEAE5N

It was a very relaxed day, per his nurse Ryan this evening. His lung X-ray this morning looked better overall. Seth had an ultrasound done on his right arm this afternoon because it appeared more swollen than the left, They did an ultrasound and found a clot that they need to monitor. As a response, they will start him on IV blood thinners. They will start at low dose, and then do a CT scan to see how it is affecting the brain.

Dr. Malakoff from neurology came and held his fingers in front of Seth’s eyes to see if he would blink. Seth blinked the first time, but on subsequent attempts, he only gave a partial or weak blink. The doctor wasn’t sure if that was a true response. He eventually deemed it a non-response at this point.

Seth’s eyelids are open like normal right now. He’s also grinding his teeth a lot. They gave him pain medication earlier to see if it was due to discomfort, but he continued to grind his teeth. The nurse said he can’t wear a mouth guard due to the risk of swallowing it.

His kidneys are working well. Today, he’s putting out almost too much urine again, so they gave him some albumin earlier and again tonight. If his fluid volumes get too low, it affects the ECMO machine.

Yesterday was the best day for his blood pressures, but today they’ve been chasing them again. He’s on 3–4 blood pressure medications to help keep them lower.

His tidal volumes are much better on the ventilator today, upwards of 313 tonight. There isn’t a max target for this number, as long as his blood gases and oxygen levels are good. His “sweeps” on the ECMO machine are down to 4 now (they were at 6.5 two nights ago). This is all positive and part of the process of weaning him off the ECMO.

It’s gonna be a good night. I told Seth, “Jesus loves you.”

-Aunt Kerry

We are grateful for another stable day for Seth. His lung tidal volumes have been between 120-140 ml today; double what it has been. Furthermore, his SpO2 values were between 85 and 94 and his Xray showed a little better aeration in the lungs. Otherwise, not much news, no changes in doctors orders.

A few days ago, I had mentioned how applicable the song “I Need Thee Every Hour” is during our time in the hospital. However, I thought that the song needed a slight change to be “I Need Thee every Second.” A good friend, Tom Bernthal, saw my suggestion and created a new rendition to it with some specific prayers for Seth included. Below is a link to the song and the comforting lyrics.

– Darcy/Ben

I need You every hour,
Most gracious Lord;
No tender voice like Yours
Can peace afford.

I need You, oh, I need You;
Every hour I need You;
Oh, bless me now, my Savior!
I come to You.

I need You every minute
Your cross, my shield;
No foe can snatch me from
The love that Jesus sealed.

I need You, oh, I need You;
Every hour I need You;
Oh, bless me now, my Savior!
I come to You.

Seth needs You every second
He is Your precious lamb;
Baptized into Your Name,
Safe in the great I AM.

I need You, oh, I need You;
Every hour I need You;
Oh, bless me now, my Savior!
I come to You.

I need You every moment
Send angels near;
Let not the evil one
Come whisper fear.

I need You, oh, I need You;
Every hour I need You;
Oh, bless me now, my Savior!
I come to You.

I need You every cell—
Each breath, each beat;
Restore what’s hurt and lost,
Lord, make Seth complete.

I need You, oh, I need You;
Every hour I need You;
Oh, bless me now, my Savior!
I come to You.

Nurse Lynne said Seth is doing so much better today! His vitals are much more stable and oxygen levels in the 90’s (were 70’s yesterday) They think he’s responding well to the antibiotics and the broncoscopy he had yesterday.

Seth’s sodium level is in the 140’s. They are still checking it every 2 hrs. They don’t want it to drop too fast. Parameters are 145-150 now. He still is getting his Esmolol for his BP because it was high yesterday, but have been able to wean it down a lot today. Will be adding Propranolol today, so they can get him off the Esmolol. Precedex that was added yesterday for sedation probably helping. Will get blood culture and sputum culture preliminary results back later today.

The Neuro team says his CT scan from last night is stable. They are opting to not start the Heparin drip for now, because his ECMO circuit is still running ok. If it’s needed to help the ECMO, they are okay to start it.

Dr Chu rounded and also said that he’s happy Seth is doing better today! He’d like to have a tracheotomy tube placed today before all his sedation gets weaned off. This will be his new airway that will be more comfortable for him and can stay in longer while we wait for him to wake up. That will be done in the next few hrs.

Pray 

Safe insertion of trach
No seizures as he comes off sedation
Good lab results
Negative culture results
Stable vitals

Dr Chu asked this morning “what is one thing that Seth likes to do?” Ben told him he liked Pit Bull and that he is a world champion swing dancer. He was impressed and stated he did not expect that from an 18 year old. He then told Seth “ok, we got to get u better, so u can get back to dancing again!”

Seth’s sodium level is 140 (great!). They are still checking it every 2 hrs and doing free water flushes. She thinks the order will get changed today, so maybe change to every 6hr checks with his other labs. He still is getting his Esmolol for his BP because it was high yesterday, but have been able to wean it down a lot today. Precedex that was added yesterday for sedation probably helping.

Neuro drs rounded. They feel like the CT scan is stable. He had 2 small bleeds last week, one on each side? His ECMO circuit is running ok, but if needed later, they are ok with starting heparin. Will start weaning Versed today, 0.1 every 2 hrs. Yesterday they had told me that they would be watching him closer for seizures with the weaning. Adding a beta blocker for BP.

-Aunt Kerry

Drs all rounded at the same time. Overall, they say he’s where he should be. So making more changes today in the right direction, despite all the activity tonight.

Neuro Dr said they’d start weaning Versed today (sedation). They will also try to “wake him up.” Nurse said this consists of a more thorough neuro exam. It is a good thing that they think he’s stable enough to do this. EEG showing that his brain is starting to “wake up,” (praise!) but will take more time while still coming off sedation. Goal is to get him off all sedation.

Internal Medicine drs say that his xray shows no more pneumo (praise!) Just fluid & inflammation that they still expect since he’s on ECMO and he’s on “rest” settings on the ventilator still. Could be weeks before we see progress and clearing of his lungs. Will follow sodium levels every 2 hrs now. Can just be related to his brain injury still. Will check with Dr Chu regarding a CT scan at some point. Would be very difficult to move him to CT with his ECMO, chest tubes etc. and they want to make sure it’s safe before they try.

-Aunt Kerry

We are pleased to report that things are still stable. He is off Pentobarb (although there can be residual for 2-3 days). He is off antibiotics, off Oxycodone but is still on a high dose of Versed. He had a Neuro exam and had a gag reflex (good). The pupils are still reactive.

The old left chest tube was oozing a bit so they sutured it up. Sodium 158.

A friend surprised us with lots of groceries as we are staying at an Air B&B five minutes away. It was greatly appreciated more than they know!

Stacey the guinea pig and Waffle the bunny are being well taken care by my niece and another bunny family.

All your gestures of caring for us help our hearts and bodies and minds.

Today I was reminded by a nurse to drink water. I was also reminded by a dear friend, who is grieving for her own son, to get in the habit to pray for myself and lay MYSELF in Jesus’ arms. I hope you all do the same.

-Darcy

Father God,

Tonight again we lift up Seth before you and ask for your healing upon his lungs.

Help us to be patient with the healing process.  Guide those who care for him, give them clear minds to do what is best for his healing. 

In to your hands we commend his care,

In Jesus Name, Amen. 

-Dave