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.
Heart rate and BP spiked a few times tonight. HR in the 130’s, and BP systolic would go up to 150-160’s (up to 190’s 1x). They would like it less than 150 systolic. They think it is related to pain because after giving him extra doses of Dilaudid, his numbers would come down. Started giving oxycodone again as needed for the same reason (help with pain). He has a very large catheter in his Rt neck for the ECMO, a broken clavicle, and 2 chest tubes. So lots of reasons for discomfort. They also gave him a few doses of Labetolol to help lower his BP when it gets up higher. They say this can be common when coming off the Pentobarb, or “coma” med.
Will also see it when he starts getting weaned off the Versed.
Another thing that they watched and treated was his high urine output. He was putting urine out “by the gallons” the nurse said, or over 4 liters in 4 hrs. They think it is related to his high sodium levels and all the “third spacing” he has had. Now that his sodium levels are decreasing, his body is starting to finally release all that extra fluid he’s been storing.
Sodium levels tonight have been 158, 161, and 167. Going the wrong direction despite him not getting anymore sodium anywhere. These levels are being checked every 4 hrs.
To treat his excessive urine output, they gave him two doses of albumin for volume replacement. What this does is help restore blood volumes. The ECMO machine was showing “chugging, and lost flows.” So they needed to speed up the flows on the ECMO machine by giving his body more volume for it to work effectively. The Albumin did slow his urine output down. It was more the rate at what he was diuresing that was the concern. Ultimately they want him to get rid of the extra fluid in his body, just not so quickly!
A doctor rounded around 11pm and and checked the chest tube drain. She said it still had an air leak. Made aware of extra Dilaudid doses given tonight, and excessive urine. Going up on feedings tonight to 30ml/hr. Will repeat his chest xray in the morning again.
Per nurse, will most likely start weaning Versed (sedation) tomorrow. Is still a very high dose. His continuous Dilaudid dose is a more normal amount. He could potentially start showing seizures coming off Versed because it can mask any seizures while he is so sedated. They will start weaning during the day when more doctors are around in case of this. He is still on Kepra for seizure prevention, but they can give him other meds if needed.
They still are drawing multiple labs on him through his arterial line every 4-6 hrs. His potassium level was a little low (3.7) at 1am, so they have given him a few potassium supplements. Normal is 3.5-5. Repeat was 4.1 (yeah!)
Temperature went up to 37.5 at 0300 (99.5F). Has put out 5L of fluid by this time as well. He has not been on a diuretic for a few days.
He has not needed any blood, but I learned that they always have blood on hold for him. The order expires after 3 days, so they renew that at midnight on the third day.
Blood sugar this morning was 83. A little lower than what they want, so they are going up on his feedings to 40ml/hr. Blood gas showed improvement. His PH is 7.39 (good), CO2 is 55 (improved) but Bicarb still elevated. The nurse said it could be because his lungs are still acidotic, and because of all the urine he’s had out.
The nurses here have been great and tell them when they are doing something. I liked how one of them
tonight in her sweet voice would say “I’m going to do this, my friend,” “you are safe Seth,” “you’re okay friend,” etc. [P.S. Hannah here–the nurse a couple of days ago told Seth “Hi Seth, it’s your nurse Nalamie. It’s 2pm on April 10. You are safe. Your big sister Hannah is here with you. She loves you very much.” And I loved that! Hoped he did too <3]
Fun fact, a code ”stork” here means someone is delivering a baby outside the L&D unit. In this case, it was in the front lobby tonight!
Overall, Seth is still very stable. It’s such a balancing act with everything in the ICU. They’ll fix one thing, which then will lead to needing to fix another thing, and another. I’m amazed at how much autonomy the nurses have, and all their resources readily available. He is down to 2 nurses now whose sole care is Seth (instead of a third neuro nurse).
To act on the high sodium levels, they are back to doing 1 cup of free water flushes every hour. Next check is 0800. His total urine output tonight was 5.9 liters (a lot!). They would expect to have to replace his electrolytes with all the urine he is spilling. Blood sugar at 0600 is 84 (Good) They want this >60. Kidney and liver function still looks good.
6:42am Nursing is going to bring up getting a CT scan sometime due to his bolt coming out and his Pentobarb being stopped. Just not an easy thing with ECMO to get to CT. Chest xray this morning showed improved lung expansion on the Rt side! So more than likely that hole is closing up.
Prayers for today:
1) Lower sodium levels
2) Improved Rt lung on xray
3) Urine output within a normal range
4) Normalized vital signs
5) Decreased pain for Seth
6) No seizures when he starts getting weaned off of Versed
-Aunt Kerry
Crosswalk Kids made some cute drawings for his room a couple of days ago. These are some of Aunt Kerry’s favorites.
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.
Friends Jeff and Sarah had bracelets made for Seth ~thank you~ Orange is the color of his work shirt. I’m surprised Seth has never made personalized ones of himself to give to all his friends and family for Christmas already.
Seth’s friend, is writing a devotion series for Lent. I thought I would share one with you.
Devotion by Will Knightly
So you also must be ready, because the Son of Man will come at an hour when you do not expect him. Matthew 24:44
Do you ever pull a prank on someone, and they say that they’ll get you back when you least expect it? Probably. I know I have, and I know I’ve said that. However when it comes to Will Knightly, I know a good amount of people who are still supposed to get me back, even if they’ve forgotten. Don’t take this devotion as a reminder, though. I’ll think about it every now and then so I’m still on guard.
Jesus is going to make His return too when we don’t expect it. When God tells us to be ready, he means to remain in the faith. When Christ comes, there is no “grace period,” because that’s what we are in right now. When He makes His triumphant return, He will know if you believe or not. So be ready! Believe in Christ, and remain studying Scripture, going to Church, and worshipping with your fellow believers!
Prayer: God, please be with Seth and his family. Help me to stay in the faith, and remain ready for your arrival. In Jesus’ name, amen.
Seth has had a more stable day yesterday and today. After they inserted a second chest tube last night, they did another xray this morning. Essentially fluid in his lungs looks the same. His Rt pneumothorax maybe slight better, but still there. They know his chest tube #2 has an air leak in it, they think he has a hole in his right lung. Dr turned down his ventilator settings and wants to give it a few more days on these vent settings before they would consider a surgical procedure to fix it.
WBC count still a little elevated (14) but it could also be high because he has a lot going on in his body.
Other biggest thing is that they were able to turn down his Pentobarb again today and he should be off of that later today. This is the medication that puts his brain in a coma (turns it “off”). This is great news that he’s tolerating the weaning. They will not adjust his high doses of Versed and Dilaudid (sedation/pain) today. The Pentobarb has a long half life, so can still stay in his system for 72-96 hours or more.
Antibiotics will finish today. No fevers. Bicarb and CO2 levels still elevated, but his PH is good (7.41), so they are okay with it given his ventilator settings.
Echo results yesterday showed that the Rt side of his heart is still enlarged. Will take time, and has just been working extra hard to compensate for his lungs.
Urine and kidney function is good. They are being a little more aggressive with their stool regimen because of all the meds he’s on that can slow his gut down. He had a large BM last night though, so is good. They are planning on increasing his feedings today more, as he’s been tolerating them.
He’s on a Vasopressor to keep his BPs down. At the moment, they are trying to put a new arterial line in so they can continue to closely monitor his BPs and draw his frequent labs. These lines just only last so long before they need to be replaced.
Current sodium level is 159, so much improved today! Normal range is 140’s.
We praise God that the last two days have been less “eventful.” Continue to pray for healing for Seth’s lungs and body, and for rest for the family. The days/nights at the hospital are long. They have an Airbnb down the street currently that they are living out of (besides their cars). They appreciate all the love and prayers and support from their “village.”
Seth had a bath. I’ve never thought about it, but the bed has a scale. He weighs 76 kg (167.55 lbs). Ten days ago he weighed 73.7 kg (162.48 lbs). Sodium 161 (better), X-ray just taken. Filter changed on EEG. It may be some background noise that they filtered? There is a little bit of fiber build up in ECMO but the numbers look good. If too many fibers build up, they exchange the box. But we aren’t there yet.
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.
