Author: hannah

Around 1:30pm, Seth’s cannula was removed and he was taken off of the ECMO machine. He is down to one nurse since the other one isn’t needed to manage the ECMO machine anymore. Blood pressure is still all over the place. It was up to 220 before they could get it under control. Then it dipped down to 101. Dr ordered cold packs as Seth is running a fever. It could be neuro storming or an infection. Lab tests were taken for blood cultures which could take days to see what grows.

We were asked to give him no stimulation, no touching or even whispering. We usually say his bedtime prayers over him but tonight it was from afar. I stood over him and prayed again in silence. God hears our prayers when they are said out loud or when our cries force us to pray silently.

The nurse said the MRI will be done tomorrow.

As you may know, we are also praying for my nephew Ellis. A friend of theirs, Rachel, sent this prayer and said I can share it here.

Please pray with me: Father, we ask for your healing hand over Seth and Ellis’ mind and body. We pray over their brains. Heal the neurons. Restore what’s been hurt. Rewire, repair, and renew every part of their brains to work the way You designed it to. Strengthen them as they relearn how to breathe independently. Let every muscle, nerve, and signal from their brains line up with your perfect order.

We pray for the results of the MRI. Lead the doctors to see exactly what they need to see. We pray for good news for hope, for clear signs of healing, for doors to open for the next steps. Amen

-Darcy

Pix of Seth under a rainbow to remind us of God’s commitment to us.

We received the word that Seth’s cannula will be removed and taken off the ECMO machine this morning.

As we wait, enjoy this post from Hannah ❤️

-Darcy

The night before the accident, I was showing Seth some of the line dances I was planning to compete with in a few weeks. At first, he wasn’t too impressed with my skills — typical Seth — but by the end of the night, I think I won him over. He even said he might check out one of the country dance venues that has 18+ nights. After the accident, I wasn’t sure if I could bring myself to go to the dance event (last Friday in Tucson). Everything felt so heavy. But in my heart, I knew I had to go — for Seth, and because I knew he’d want me to keep dancing. While I was there, I shared Seth’s story with the people I met.

Before the line dance finals, the whole group gathered and prayed for his recovery, and they all said they were dancing for him that night. I also met people who had been through their own hard journeys and were willing to share their stories with me. It was incredibly moving to feel so much love and support from people I had just met. I am sure Seth felt it too!

At one point, I spotted two little kids — a brother and sister — out on the dance floor, and it made me tear up, remembering when Seth was that small and we would dance together. Now, he’s grown so much that I don’t even have to duck when he spins me!

For those who may not know, Seth is the 2019 World Swing Dance Champion. He poured his heart into reaching that dream and he’s so proud of it. We even have his trophy — called “the opus” — sitting right in his hospital room.

Attached are memories of Seth and I dancing (notice how he keeps growing and I stopped LOL) and wearing his merch at the dance competition.

-Hannah

3:00am Seth went down for a CT scan. It was a 5 person precise process to transfer him and all the equipment downstairs.CT showed nothing new in terms of brain bleeding.

6:30 am X-ray was done and another one is planned for this afternoon, in regards to maybe taking him off one of two chest tubes.He’s still having BP issues, so in addition to BP meds, he was given Fentanyl in case t’s pain related.

Specific prayers for today:

1) More rest for Seth

2) Better managed BPs

3) Clearer neurological answers

4) Continued lung improvement

Student Life picture in yearbook of Seth and Anika in front row at a game. He is great at cheering people on, so now it’s our turn to do so for him.

-Darcy

Today has had its share of ups & downs since this mornings update about neuro-storming. Day time challenges were mainly due to blood pressure fluctuations (first too high, then too low, then too high again, etc) and a high pulse rate. They are also working to increase his Heparin dosage to a higher therapeutic level. Once that level is reached, Seth will get another CT scan to verify no bleeding has restarted.

Today’s victories include an increase in his lung tidal volume (above 400 cc), reduced reliance on ECMO (1/2 sweep), and decreased Oxygen to room levels (~21%). These numbers are encouraging as less than a week ago his tidal volume was 20 cc, ECMO was maxed at 7 sweeps, oxygen was 40%.

Seth is now getting his sleep back and he is peacefully snoring. Although still considered unresponsive, he is giving us hints that he hears us. For example, he sometimes opens his eyes when one talks to him. But this is not consistent yet. The neurologist also said that he has some response to a pinch, but still considered a minimal response.

Seth needs continued prayers for:

1. His body can handle decreased ECMO & normal oxygen.

2. That ECMO can be removed soon.

3. That he can tolerate an MRI soon.

4. That God heals his brain, heart & lungs.

-David

They are starting to put Seth on a normal sleeping schedule. He was given 3mg of Melatonin tonight. There is no sign of pneumonia so at some point they would like to take chest tubes out.I told Seth to make it a healing night. Good night.

-Darcy

Some changes transpired through the night around 3:00am. Seth’s pupils became larger from 5-6mm to 8mm. Still reactive. Since he had a head injury they still check his pupils every hour. Intensivist was called, and he came and assessed Seth. Still having tremors in arms and legs and extremities more stiff, right more than the left side. Order received to get a stat CT scan of his head to cautiously rule out a head bleed. Will get a portable EEG done for a minimum of 2 hrs to check for seizures.

Nurses also noted that he’s been awake a lot the last few hours. Dr said he’s concerned about him not getting sleep. Seth could potentially be delirious and his sleep cycle way off. Valium was given to help Seth relax. He did close his eyes and snore for a little bit, but didn’t last long.

Team took Seth down for another CT scan. It was read right away and intensivist came back and said there was no concern on the CT. Not seeing any seizures either. Wanted Neuro Dr to come evaluate. Heparin is safe to continue. Neuro Dr came in. Did a thorough exam. Concerned that Seth has very spastic muscles, positive clonus (hyperactive nervous system) and is twitching. Good that brain stem is working, he responds to noxious (irritating) stimuli, and pupils are reactive. No clear answer clinically what is going on, and a “very strange case.”

Neuro Dr and intensivist recommending that they get his BP more under control . Will start a Nipride drip again on top of other BP meds. Neuro Dr will consult with oncoming dayshift providers. May consider some sedation to help his body to rest more. This could all be related to his brain injury, but reassuring that imaging is stable. Neuro to decide about sedation today because they also don’t want to mask his neuro symptoms. Needing him to rest more than he is, and seems overstimulated by everything.

Blood gases look good this morning. Sweep turned down to 1 on his ECMO. So lungs are looking better, and pulling good tidal volumes. Can be a slow process to wean. Anticipating an MRI once he’s off ECMO.

-Aunt Kerry

If you haven’t seen late last night’s update, please read.Dear Lord, Calm the storms within his cells and tissues. Amen

-Darcy

I’m at Seth’s beside, looking at his yearbook from his senior year of hs. What a handsome guy he is! The Bible verse he chose was Psalm 119:105 “ Your Word is a light for my feet, ever shining on my way.” Jesus is still shining bright in your life for sure! It is evident in all the healing that has occurred in your body!

Good news from today is that Seth was able to get his CT scan done! He had therapeutic coagulation results. Praise God! The CT scan was stable, meaning no further bleeding, so they are more comfortable continuing his Heparin drip (to thin his blood). The coagulation labs will continue to be done, to make sure his Heparin levels are therapeutic. They also decided to do a CT scan of his chest while he was already going down for imaging. He still gets daily chest X-rays, but the CT is a more comprehensive test. It showed that his lungs are much more open and aerated than his previous one, but still continues to show some lung injury and a small amount of fluid in pockets of his lungs.

Overall, much improved, but the lung injury is the reason why he’s on ECMO. They’ll continue to wean as he tolerated. His tidal volumes on the ventilator are 360-390’s, so very good!

-Kerry

The past few days, Seth has had tremors/shivers. They don’t know if it’s from an underlying fever or the result of something neurological.

In one of the prayers for my nephew, Ellis, someone wrote, “Calm the storms within his cells and tissues”. As in Mark 4:39-41, if Jesus can rebuke the wind and sea with the words Peace. Be Still, then we can be assured that God has everything under control, even in the midst of our most violent of storms.

Specific prayer tonight:

Calm the storms within Seth and Ellis’ cells and tissues.

-Darcy

PS, For all those praying for Danita, she went back to surgery today and was moved back to trauma ICU. Please pray the same prayer for her.

Psalm 27 (selected verses)

Hear my voice when I call, Lord; be merciful to me and answer me. Do not hide your face from me, Do not turn your servant away, Do not reject me or forsake me, God my Savior. I remain confident of this: I will see the goodness of the Lord in the land of the living.Wait for the Lord; be strong and take heart and wait for the Lord. Lord God, Grant us patience and endurance. Grant us peace. Grant us faith. Most of all, grant Seth healing.Hear us Lord! Be merciful to Seth. Do not hide your face from him. We are confident in your goodness and we wait for your answer.

In Jesus Name, Amen.

-David

11pm (Thurs) Temperature is 99.5, and was low grade last night as well nurse said. They are giving him Tylenol to help with some tremors/shakes that he’s been having (that I haven’t noticed this evening). Is probably helping to keep his temps down. His BPs and heart rate are better tonight than I’ve ever seen. His heart rate had been 100 or higher and it’s in the 70’s tonight. Nurse said he’s still on multiple BP meds. But I’m still so proud of him!

Seth’s sputum culture from a previous broncoscopy tested positive for cocci (Valley Fever- fungus) and nocardia (bacteria). The nurse tonight said that we would all probably test positive for Valley Fever if we were tested, but may never show symptoms. It can manifest itself more when we are immunocompromised.

He is on an anti-fungal medication and an antibiotic to treat both of these.Earlier this evening Seth received another unit of blood when his hemoglobin level went below 8 (his was 7.8). They still do routine blood work on him every 6hrs through his arterial line, and his coagulation labs more frequent than this.They have yet to do a CT scan since they started the Heparin. The nurse said that he is receiving a “neuro dose,” meaning that they are going cautiously slow on titrating it up. Need to get two therapeutic levels before they’ll do the imaging.

He still has been requiring albumin for volume replacement most shifts. This evening he hasn’t required it yet.He is tolerating the adult mode on the ventilator and his tidal volumes are around 320-330.

0345 (today) Got his morning chest xray a little earlier. Tidal volumes 380-407 this morning (great). I think he looks like he is retracting less. Still is tremorous. He hasn’t had Tylenol since last night. Nurse isn’t sure if it helped or not. Nurses doing passive range of motion this morning with his feet, hands, arms, and legs to keep his muscles going. First time I’d seen them do this with him to this extent. He has washcloths in his hands to keep them from clamping down. He got a shave with his bath today. Hemoglobin was 8.2 this morning, so better! His coagulation labs are getting close. They were 0.1 below therapeutic range. Will recheck @ 0800.

Seth’s ECMO sweeps are at 2. His blood gases have been stable, but they have not been able to wean beyond that just yet. 0630 Dr Yu came and examined Seth. Goals: To get CT done, continue to wean ventilator settings and ECMO. Has not seen chest xray report this morning.

Prayers for the day

1) Seth’s body to respond well to the anti fungal and antibiotic he’s on

2)Therapeutic coagulation labs

3) Motor movement & increased responsiveness

4) Good chest xray results

5) Seth and his family to feel Gods loving arms around them

6) Continued prayers for Seth’s cousin, Ellis in Malaysia who they may try to take off sedation today. His MRI results were good, as well as brain pressures, and no further seizures. Praise God!

I heard this on the radio on my way into the hospital tonight. When I looked it up, and watched the music video, it reminded me of the army of people Seth’s had in the waiting room and the even bigger army praying for him, and our even bigger God!

-Kerry

Cell by cell.

-Darcy

1  Praise the Lord, my soul;
    all my inmost being, praise his holy name.
2 Praise the Lord, my soul,
    and forget not all his benefits—
3 who forgives all your sins
    and heals all your diseases,
4 who redeems your life from the pit
    and crowns you with love and compassion,
5 who satisfies your desires with good things so that your youth is renewed like the eagle’s.

Lord God,

You are worthy to be praised and your blessings & mercies are uncountable. 

Yet we ask for your healing miracle to be given to Seth & Ellis. Only you, Lord, understand what needs to be healed. Only you can grant healing in the way that Seth & Ellis needs. Please, Lord, grant this to our son.

Grant this to your servants, Seth & Ellis.  We pray in Jesus name, Amen. 

-David