Attending ICU dr said there is still a leak in lung. They turned down vent settings so his lungs aren’t doing anything until the “tear” heals. They may consider a tracheotomy at some point as it may be more comfortable than the ventilator tube when he’s more awake. Yesterday, he was being given small doses of meds for low blood pressure and today he’s being given small doses of meds for it being too high. They are managing it for now without a drip.
Tube feedings will be increased.
Dr did a brief neuro exam. Nurse said he’s a good doctor and is who she’d want to take care of her kids.
Neurosurgeon just popped in, EEG shows less “bursts”, but more intermittent activity. His sedation med, Versed will be tapered down to half in the next 10 hours (.1/hr). If in the next couple of days they can’t do a MRI, they will do a CT. They will monitor for seizures because Versed could be masking them now. Dr will be coming in to do an ultrasound of extremities to look for blood clots.
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.
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.
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 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.
