Quick update before doctors make their rounds. During the night, the EMCO alarm went off because of coughing and a bath. Nurse was told to hold off on IV for now. Oxygenator numbers are about the same as yesterday. X-ray taken. WBC 36 yesterday, now 26 (Yay! Keep praying for that!) Sodium @ 4am 150.
Nurse from yesterday is back. She just brought me a warm bagel, cream cheese and OJ.
Please see the new 5th floor prayer board. The unit is full of patients not just these 4. Most likely we will add to this list as we meet more families in the waiting room.
Todd – Will be put on a waiting list for a liver due to autoimmune complications
Bronchoscopy done. Tried clearing as much as they could out of lungs, but Seth didn’t like it so couldn’t clear completely. But got enough to sample and test; won’t get results for a couple days.
More often than not, people on ECMO are started on IV blood thinners earlier so machine can work properly and give the best oxygen. But with Seth’s brain injury, that was in question. The machine level was a bit lower than yesterday so neuro deemed it ok to do CT.
If CT looks good, they’ll start on IV Heparin. Based on discussion w/ neuro team, they can start on low dose and go from there.
Waiting for radiologist to determine results of CT scan
No clots shown on ultrasound (yay)
Specific prayer: Good CT scan, that antibiotics keep working hard, healing lungs!
Pix is of the sunset tonight while eating outside the cafeteria. God shows his beautiful creation even in the midst of despair.
-Darcy
The Lord is my shepherd, I lack nothing. 2 He makes me lie down in green pastures, he leads me beside quiet waters, 3 he refreshes my soul. He guides me along the right paths for his name’s sake. 4 Even though I walk through the darkest valley,[a] I will fear no evil, for you are with me; your rod and your staff, they comfort me.
5 You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. 6 Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord
They are fine with his SPO2 readings because the ECMO settings he is on that is taking care of all of that. They could possibly do another Broncosopy later to help clear his lungs. That is using that scope to get down in his lungs better. They send a sputum culture, but if they could get in his lungs deeper, they would send another. WBC count went from 17 to 28 today. So worried about infection somewhere. Will follow the blood culture and sputum culture and watch for bacterial growth there.
Update: Fellow ICU Dr said they are going to do broncosopy now.
Today is Palm Sunday. We received some palms from our church Lamb of God and from Emmanuel where Seth went to gradeschool. They are decorating the waiting room.
White blood count higher @ 18.7. Waiting on blood culture results if there is an infection.
Nurse, Stacey put on a sticker monitor on his head to monitor sedation. She tells him, “We are all taking care of you, this is all temporary”.
I’m sure she was talking about his physical care, but to me it was a comforting reminder that while our earthly life is temporary, it is through faith in Jesus that we receive the forgiveness of sins and eternal life in heaven. And Seth knows that too.
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.
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.”
