I’m in the half reclined chair in Seth’s room. It’s pretty quiet and I’ve slept through nurses coming in and out but yet I woke up instantly after a couple hours of sleep feeling like I’m wide awake. I think my body is adjusting to being ok with a couple hours of sleep at a time. Some random things went through my head, like, how do they wash the unit floor clean when nurses and doctors are here 24/7? How do they dispose of biohazard items properly (do they burn it or bury it)? Why does the cafeteria close at 2am (doesn’t the night shift get hungry, too)? All these things are not important but my brain is stuck on them for an answer. I need to force myself back to sleep but decided to get up and tell Seth of all the people that send their love and are praying for him- and to keep fighting for us.
2 am – Nurses came in and mentioned his heart rate and oxygen levels look better and that it did the same thing at 2 am last night. Maybe there was a reason I needed to wake up at this time to hear that?
8:15 pm Second chest tube was placed as they were thinking first one wasn’t working effectively. X-ray shows that it was placed ok. They will do another X-ray in the morning. Sodium levels were going down a bit after they switched back to fresh flushes (good). Tomorrow we can discontinue wearing gowns, gloves and masks which were for precautionary measures.
For the past couple days, we’ve received meals which we brought into the healing garden for a family meal. I’m getting some help at work and even had someone go home to feed the bunny and did my dishes that had been left for a week. All these little things and your messages mean the world to us! Picture is of simultaneous images of our window looking up (notice the balloon shadow) and his friend waving down below).
-Darcy
Lord God, the great physician,
Look upon our child Seth with your merciful healing. Restore his lungs and give him the breath of life once again. Rest his heart that it would heal and be strong. Protect his mind and grant him peace & comfort in this time.
As evening approaches, we leave him in your healing hands.
Dr gave us another update. They are still concerned about his Rt pneumothorax (air in the pleural space outside his lung that can affect his lung expansion) They changed out the drainage system to see if that would help earlier. It was hopeful, but they got another chest xray which showed a slight improvement, but is still there. So they are going to reposition his chest tube today. There is still a concern for his sodium levels, but currently is 169, which is down from 175 from last night (good) He’s back to more free water flushes to help draw that out. His Pentobarb was dropped in half from earlier. This is the medication that “turns his brain off.” They plan to possibly half it tomorrow again. They don’t want to keep him on this too long bc of its effects. It has a long half life, so it could be in his system for 72-96 hrs or longer once it’s off. Still progress! Feedings are still going slow. His gut is being slowed down by all the medication as well, so they are watching that closely to not cause complications like an ileus. His ventilator settings were turned down to “rest settings” so that the ventilator does all the work for his lungs. So continue to pray for his Rt lung specifically, lower sodium settings, feedings tolerated, and that Seth continues to tolerate being weaned off meds. God is good!
-Aunt Kerry
Pastor Pautz stopped by and gave us some encouraging Bible verses. This one is from a Christmas hymn, but applicable for the season we are in.
After spending the last 6 nights overnight at the hospital, we convinced Darcy to spend the night at their air bnb. Got a few more questions answered. He has 4 nurses tonight. One to manage his patient care, one to manage his Ecmo machine, a neuro nurse to manage his phenobarbital (seizure med) and pupil exams, and one learning Ecmo. Normally he would have just 2 nurses. So lots of extra hands to better care for him! His nurses sat right outside his room all night, so that was comforting. They’ve really all been great answering my questions.
He’s on a continuous phenobarbital drip for possible seizures since 4/8. Not abnormal for a head injury. The neuro nurse came back in and said she couldn’t find this in his chart, so she’d ask the dr this morning. They are continuing to monitor his EEG brain waves and watch for seizures.
His CT scan done Wednesday night on his way to the new unit did not show a blood clot (so no pulmonary embolism).
He’ll be on contact and droplet precautions until sat probably, when his virus should be gone. They said the adeno virus is like a cold. We aren’t sure if he ever had that H flu after all? He continues to be on antibiotics and a steroid. No fevers. His Ecmo machine has a heater on it that helps to regulate his temperatures and ensures that the blood returning back to the heart is warmed.
His blood gases are improved, but they continue to draw labs from his arterial line every 6hrs to check his kidney and liver function, red blood cells, WBC’s, and blood gases. A continued concern is that his sodium level is high. Tonight it was 173 around 0100. Yesterday as high as 170. They switched him to a different type of IV fluid solution called D5W (dextrose 5%) instead of the free water flushes in his OG tube to see if this will help bring it down. Their goal is to keep his sodium level >150, but no more than 160.
They are turning him every 2 hrs, assessments every 4 hrs, pupils hourly. These have remained stable, meaning they are both reactive and within a certain range of each other. The best part of the night is when they gave him a bath around 215 while they played Seth’s favorite music from “Pitbull.”
Seth is still on plenty of sedation including Versed, but no longer the paralytic medication. Also Oxycodone & Dilaudid (pain and sedation). Pentobarb is being given to keep his ICP pressures down in his brain. He got his bolt taken out yesterday afternoon, so they are no longer monitoring them, so they can focus more on his lung recovery. The goal is to wean him off this after 24-48 hrs. Then they will slowly reduce his sedation meds, so that he is awake while on ECMO. They prefer patients to be awake on ECMO, which would be him opening his eyes and then going back to sleep.
The respiratory therapist said they took him off of Nitrous oxide tonight, which is good that he’s not needing it! This is a vasodilator that dilates the blood vessels in your heart and lungs to get more oxygen. They are more tolerant for lower oxygen levels. They’ve been around upper 80’s to low 90’s. May not exactly match up with levels on the ECMO machine. Seth is still on a ventilator, but the settings are low for muscle memory, so that his lungs don’t forget how to work. The ECMO machine is still doing all the work for his lungs. Seth’s heart is still strong and pumping blood like it should be on its own w/o support.
Kidney function remains good, and he’s putting out plenty of urine. He is still on a diuretic and a low dose of blood pressure medication. His liver enzymes are a little elevated, but they are focused more on his PT/INR levels to be within range (for blood clotting)
They started tube feedings tonight around midnight at a slow rate to make sure Seth’s gut stays healthy. Meds can slow his intestine motility, so they’ll start slow. Still having bowel movements, and they’ll expect more now that he’s on tube feedings.
His Ecmo machine is checked hourly to ensure that no clots develop in the tubing because they don’t have him on blood thinners anymore (that normally patients are on to prevent the tubes from getting clogged from extra coagulation). This is to help protect his brain from more bleeding.
He has been having daily chest X-rays, so had another this morning. Showed pneumothorax as before, but needs to get read from radiologist. Chest tube still on right side.
Things to pray for today:
1) Improved chest xray results
2) Lower Sodium levels
3) No clots in his ECMO circuit
4) Continued stable pupil checks and vital signs
5) Continued stable blood gases (Lactic acid 1.3 this am- good)
6) Rest for Seth and the remainder of his family
Update 7:15am
ICU drs just rounded. Right sided pneumothorax is worse, but they aren’t sure why bc his chest tube seems to be functioning. Overall, aeration is a little better. Ecmo settings good. Need to continue to treat his high sodium levels. They’ve gave him so much sodium from a neuro standpoint to help his brain. Need to ask the neuro team about seizures. His WBC count is still elevated, but it has been. He has 2-3 more days of antibiotics, and still on steroids. Will repeat the echocardiogram today to check his heart. Overall, a little better aeration of his lungs on the chest xray.
Update 7:20am
Neuro came in. Sodium is still 172 (they want it 150-160). Pupils still reactive, which is good and is all they expect right now. He is on so much Pentobarb that turns his brain off essentially. So they don’t expect any movt’s from him or neurological signs until a minimum of 72 hrs once it is turned completely off. It’ll need to be weaned slowly. The drs will decide what to do today. They have not seen any seizures since he has been here, but the Pentobarb can also mask any as well. It is a very strong drug.
– Aunt Kerry
We continue to ask for just family at the hospital. Thank you.
Three years ago we went to the Answers in Genesis Creation Museum and Ark in Kentucky. It must have impacted Seth a lot because he’s always wanted to go back and possibly work there.
A friend forwarded this video of what God has made and is an interesting view of what he watches over every minute. From the vast universe to the nucleus of our cells, God created it all with precise detail and all for a purpose. Keep praying cell by cell.
-Darcy
Lord God,
As these trials have come upon Seth, look upon him with favor and grant him boundless measures of your grace & healing. Strengthen his heart, heal his lungs, and cause the life sustaining machines to work in unison with your healing hands.
As we retire from this day, we leave him in your hands just as we do each day.
Bolt is out. It was delayed for 20 min because they lost the wrench. It is very ironic because Dave is always looking for lost tools too after the boys use them.
The ECMO is pumping 4 liters of blood per minute.
The nurses are fabulous, they are constantly asking if we need anything or if we have questions. We have to wear gowns, masks and gloves in his room.
Pix attached is of a sign made by good friend, Jeff. It’s in our claimed corner of the waiting room.
Yesterday 2 school friends from Seth’s class stopped by to see us. They are pre-med students. I thought of all the nurses and doctors that have given their care and attention to Seth. One day when they are taking care of patients of their own, I hope they always pray for wisdom and guidance in making difficult decisions and seek to honor God in all that they do.
Neurosurgeon came in. Brain pressures are being controlled. CT didn’t show bleeding. He will take out bolt today.
ICU dr checking that circuits flowing properly, not clotting, and parameters are at goal which I think they are. There is an issue with the right chest tube, but it looks a little better today than yesterday. X-ray didn’t show any improvement but he didn’t expect there to be.
A swab from yesterday shows he has adeno virus. I’m not sure what that means yet, but nurses are wearing gowns and masks.
I just looked up and saw a couple pictures on Seth’s wall that must have been missed when we switched rooms. A nurse must have taped them up. It is an old soccer picture and the hymn lyrics that his high school principal brought by. Because we haven’t had a chance to rehang the pictures from the other room, it was nice to see these two up there.
My sister shared part of a prayer from St Patrick in the 5th century (St Patrick’s Breastplate).
Christ with me
Christ before me
Christ behind me
Christ in me
Christ beneath me
Christ above me
Christ on my right
Christ on my left
Christ when I lie down
Christ when I sit down
Christ when I arise
Christ in the heart of every man who thinks of me
Christ in the mouth of everyone who speaks of me
Christ in every eye that sees me
Christ in every ear that hears me
-Darcy
PS, I was asked to leave the room for Seth’s X-ray and while I was sitting in waiting area Danita’s husband happened to come down to check on us. As I type, she is in surgery from a complication.
Now that we are on a new floor, I’m sure there will be a new list of people to pray for.
As this has all been a whirlwind, for the next few days, we ask for no visitors at this time. It’ll be immediate family only.
First, we’d like to say how much we’ve appreciated those that have visited at the hospital. In the early days, some of you were able to see Seth and some of you were able to see him being transported from one place to another. We are humbled by the outpouring of support for those that came to cry with us, give us a hug, and sign the guest boards.
As this has all been a whirlwind, for the next few days, we ask for no visitors at this time. It’ll be immediate family only.
Please continue to add any pictures of Seth you have on the prayersforseth.com website. We are frequently looking at those to keep our spirits up.
Update as of 1:10 am: CT shows cerebral edema. It is missing some grey and white matter. With brain bleeds, it’s expected. More questions will be asked later, I’m too tired to process that info.
The Influenza H is not necessarily playing a role here. It’s more common in the pediatric population and is in the top 4 influenzas that kids get.
Seth looks peaceful right now. It’s not as loud in this new room. We hope he continues to keep fighting.
A friend shared this devotion with me. I find it comforting in what we are going through right now.
We went in and saw Seth. They were still trying to settle him in. His Ecmo machine is taking care of his heart and lungs. They are starting him on a new medication for his ICP levels (cranial pressures are high), so neuro nurses were helping with that. They found out he has Influenza H, so now we all have to wear masks to protect us and him. Darcy asked what H meant and the nurses hadn’t heard of it either. Now we wait for the answer to that question and for CT results. Other numbers looked good on the monitor.
We’re truly grateful for all the visitors who have come by—it means a lot to us. At this time, we’d like to keep things limited to just close family.
We got to see Seth get wheeled to CT again. He was laying down flat so it seemed like the ECMO and paralysis is doing it’s job. We’re currently waiting for news on the labs they drew to find the “new normal”
Keep the prayers coming for Seth! And, prayers for us too. We’re exhausted.
