Happy Easter family and friends! Much better news this morning on a respiratory standpoint. Seth’s tidal volume (the amount of air moved into or out of the lungs in one breath) is much higher. Yesterday it was in the 40’s-50’s, this morning around 5am it was hovering around 100, and at 7:45am it is around 120! Interesting fact: A healthy adult male’s normal rate is about 500ml of air per breath, and if you breathed in and filled your lungs it would be about 1000 ml. So everyone take a deep breath with me! Today is the last day on antibiotics. His white blood cells are still high but they aren’t too concerned about it right now.Yesterday they started tapering off and is now off the Dilated IV but giving Oxycodone 10 mg x 4 hrs. His blood pressure was elevated early this morning so they did give him a bolus of Dilated and a blood pressure medicine.They wanted to wean him off the strong Dilated IV to get a better picture of how he is doing neurologically.
In the weeks before the accident, we were watching Sight & Sound’s state-of-the-art theatrical productions of the Bible. I was even talking about taking a trip to Branson to see a show. Today and tomorrow (through 4/21), Sight-sound.tv is offering a free streaming of JESUS. Filmed in front of a live audience, you are invited to gather with the ones you love to witness some of the most awe-inspiring, miraculous events in the gospels as the story of Jesus’ life unfolds on your screen. Please watch it if you are able.
There are no new updates from this afternoon. We’ve been doing a lot more talking and reading to him. Please pray for a peaceful, calm night tonight, for ALL of us.A dear friend who lost her son, Andy, to cancer on Dec 14th, 2024 shared the Lord’s prayer with me. The extra context makes it even more personal as I pray it.Our Father (who loves us more than we love our own children), who art in heaven (where you are God and you have places prepared for us), Holy is your name. Your kingdom come (and dwell in my heart), your will be done (and may I alway trust your will and know it is good and perfect) on earth (here with Seth, here in this storm, here with others who have illness and injury) as it is in heaven (where angels and the saints and Andy live in your glory). Give us today our daily bread (and thank you Lord for the riches and blessings you provide each day to sustain us – body, mind and soul) and forgive us our sins as we forgive those who sin against us. Lead us not into temptation (make our faith strong so we are not tempted to doubt your power, your will or your love) but deliver us from evil (free from accident, illness, injury, our sinful nature). For yours is the kingdom (prepared for us for eternity), ALL the power and ALL the glory forever and ever. Amen.-Darcy
Instead of changing out just the oxygenater circuit they replaced the whole ECMO machine. Seth has always had the attitude of buying something new instead of repairing/fixing the problem, so I’m sure he is happy about this. All went well, SPO2 has increased from 60’s to 82. BP 126/50 HR 120.Pray for continued healing cell by cell.
5:10am BP’s higher the last few hours. Nurse gave him his Labetalol last night, and his “as needed” Hydralazine for BP this morning. In addition, she gave him an extra dose of Dilaudid to see if it was pain related. Nothing seemed to help.
Also this morning, his oxygen saturations are lower. While he’s on ECMO, they are tolerant of him being in the mid 70’s. Right now they are low 70’s to upper 60’s. Output from chest tube drain is down overnight. Usually puts out 250ml-300ml of fluid. Overnight had 125ml. Unsure if it’s related to his oxygen saturations.
Doctor at beside looking at ventilator settings, and nurse suctioned his trach. Nurse said it’s been a “dry suction” every time, meaning that he has minimal secretions. Waiting for xray to come do his routine chest xray. Attending doctor also came in. Thinks that they are going to need to change out his ECMO oxygenator this morning. Due to him not being on blood thinners (other than SQ Heparin) there can be small clots that form in the cartridge and tubing (which have been there is Seth’s case) that can affect how the ECMO circuit runs. They’ve told us to expect this. He’s on a higher sweep setting since yesterday, meaning how much CO2 is being pulled from his lungs. His Lactate is good this morning, so we know that he’s getting enough oxygen to his tissues right now (most importantly). If his tital volumes drop on the ventilator before they change out the ECMO circuit, they may try another broncoscopy to help clear his lungs. Nurse is going to give him his BP meds a little earlier and more Dilaudid for pain before they move him around for his xray and bath.Xray came and did film. Doctor looked at it, and said it is consistent with how it’s been. So now changes there. Waiting still for other doctors to round. Right now, his BP is better 116/46 and his SPO2 sats are 79-81% (also better).To change out his oxygenator, they’d have to disconnect his ECMO tubing and attach new tubing and a new circuit. The process is quick so he’s not off of it very long. No timeline given when it’ll be done.
He has the same nurses today as he did yesterday. The nurses are saying that the intensivist can make their recommendations to change the oxygenator out, but it’ll be up to CTS (cardio thoracic surgery) that manages it and would have to make that final decision. It would be about 15 secs that the Ecmo would be disconnected. It’ll have to be changed out at some point, it’s just a matter of when.
7:43am His internal medicine said from their standpoint, he’s “about the same.” They were happy his sodium levels are stable, his BP and heart rate are being managed off the Esmolol drip, & temps are stable. His WBC count is still elevated, but has been consistently this way. They’d be more concerned if they saw a spike in this, or if his temps went up (but they have been normal). Will be on a 10 day course of antibiotics. Expecting chest tube to come out in the next 2 days. They don’t see an air leak, but want to make sure that the hole is sealed well so his lung doesn’t collapse again. They looked at clots in his ECMO circuit. Said if we have questions today, their office is down the hall and they’d be happy to come. Waiting for CTS to determine what to do about his oxygenator.
7:58am The internal medicine drs this morning called the “hole” in his lung more of a “fistula.” Treatment is the same, but a fistula is more of a passage or tunnel-like connection between his airway and the pleural space. So to me, probably why they are being more conservative and why the lung took longer to heal.
8:24am The CTS nurse practitioner came by and had surgeon on the phone. They will change circuit out this morning after they do some of his morning cares.
-Aunt Kerry
Specific prayer today:
Lungs to be healed
Antibiotics to keep working
Safe ECMO replacement when needed
Trigger warning: Picture is of the ECMO machine. You’ll notice two tubes on the left. The darker is the unoxygenated blood being taken from a vein in his neck which goes through a honeycomb box, called an oxygenator that puts in oxygen. The lighter tube is the oxygenated blood returning to his vein. The technology that God has given us wisdom to figure out is amazing!-Darcy
PS, Hannah, Ben and Seth have always liked the show Phineas and Ferb (pix). Every time someone says “oxygenator”, it reminds me of the character in the show who is always making a machine/invention that ends with -ator. I’m sure Seth would find this humorous too.
Some praises to report!Nurse said that Seth has been off his Esmolol (BP drip) since this morning and his BP is being well managed on 3 oral BP meds. Currently it is 101/47.His sodium levels are within normal range now (141-142). They are checking every 6 hrs now instead of every 2 hrs. He has normal parameters as well (instead of keeping them higher). They are doing 30ml flushes scheduled still, but no sodium supplements.They increased the inspiratory pressures on his ventilator to try to push his lungs a little. They want to see if he’ll tolerate a little bit higher pressures in his lungs. Goal is to increase his ventilator support and decrease the Ecmo support. If he tolerates the higher pressures overnight, they may discontinue his chest tube #2 tomorrow. His blood gas they just drew “looked good.”Neuro wise, nurse said that his cough is stronger today, he’s been responding hemodynamically to his cares (vital signs change when they turn him etc..), and he’s opening his eyes. All good things. Still waiting for him to respond to commands.He’s still on antibiotics. The repeat culture that they drew from his third broncoscopy is still negative from 4/13 (second one was positive). Temperatures have been good.Tomorrow they may start him on oxycodone for pain and try to get him off his Dilaudid drip.I read him “The Tale of Three Trees” tonight. It’s been a peaceful “Good Friday.” I told Seth tonight that Easter is in two days. God is good!-Aunt KerryPS, Thank you to those that are sending meals or other means to do so. These bless us in body and spirit in more ways than you know. We have received many lovely cards and thoughtful gifts from people we know and from people we have never met. Our hearts are humbled by the outpouring of love.
Today, there was a generous donation of kettle corn (thanks OMG! Kettle Corn) delivered to the teams of nurses in the unit and a couple families in the waiting room. (Lots more delivered than what shows in the picture. On a side note, OMG! means Our Marvelous God!). Thanks for thinking of them and making their day a little sweeter!
We also received a beautiful handmade ceramic cross from a friend. It is even more meaningful to receive it on Good Friday, the day we remember our Savior dying on the cross for us.-Darcy
415am Ventilator keeps alarming. Respiratory rate increasing. Gave a .25 bolus of dilated (for pain) to get the ventilator to do its job (he’s already on 1 mg IV). At the start of the shift he was maxed out @ 300 mg of Esmolol (for BP). It’s been decreased to zero. We wanted to get him off of it as it’s a dilator of blood vessels and it affects the ECMO flow.
10am Dr said brain is stable, will just be lung and ecmo doctors now. He’ll do another brain scan on Monday just to check.
4:15pm No bronchoscopy today. They will reevaluate tomorrow. One of the devotions I read is about 3 different kinds of tears we have and each has it’s own chemical make-up. First is continuous tears that keep our eyes moist so we can see clearly. Each time we blink, fluid oozes from the glands above the outer side of each eye. It washes away dust and germs, has lyzomes to prevent bacterial infections, and special oils to help reduce evaporation. The second type are reflex tears, which contain a lot of antibodies which protect from irritants, ie onion you are cutting, smoke from campfire and pollen. The third type are emotional tears ie sadness, frustration or being overwhelmed with joy. They contain hormones caused by or related to stress or pain. Some of these actually leave the body when you cry, so having a good cry really does help.Psalm 56:8 reads: You number my wanderings; put my tears into Your bottle; are they not in Your book? This verse emphasizes God’s awareness and recording of the sorrows and hardships of believers. It assures them that even their tears and struggles are not forgotten by God.To God be the glory of how much he cares for you!-Darcy
Devotion exerpt from Without Excuse, the Compelling Evidence for Creation
According to the nurse it’s been an uneventful day with no doctors orders other than increasing a blood pressure med. He’s on 3 different ones in tablet form (crushed and put into water) and one on IV. Neurology lowered the sodium goal from 145-150 to 140-145 (currently 142). Sodium tablets have been decreased. So, yay for a better day!Dave brought some books from home to read to Seth. I hope he is enjoying listening to 1001 Cool Jokes. Another one is the Tale of the Three Trees which happens to be the perfect book as it’s Good Friday tomorrow. Here is a link to the summary but I suggest you get get the book with the full story: https://biblicalviewpoint.com/2021/12/10/the-tale-of-three-trees/
For those of you following the list of patients and families around us, I’d like to give a few updates that we know about. Danita now has a blood infection but is off her breathing tube.Trey’s mom reported he has opened his eyes and has followed a couple commands.Silverio was given last rights 5 (?) days ago but now is doing better from an infection in his stomach.Jesse Jr was awake but can’t feel his hands. He had surgery to put a plate put in his face. I’m sad to report that Todd passed away last night at 10:20pm. He wasn’t able to be put on the liver transplant list. We now look forward to meeting Todd in heaven. Others we met just once or never met: Vincente, Wendy, Lex, Derek, Lindsey, Michael. We will keep praying for them though.We know of 2 more people on Seth’s floor that need extra prayers, Gwen, and the man in the room next to Seth. He has Valley Fever and has been there for at least 3 weeks.Last one, please pray for a 16 year old boy, Caleb in WI. He was in a motorized scooter accident with severe head trauma and had a craniotomy right away. They are past the 72 hour swelling mark which in our case seemed like 72 years. I’m following his Caring Bridge updates and he is progressing well. They hope to have his breathing tube removed tomorrow and his CT scan looked good. Pray for continued progress and healing.All of these people have different reasons they are here and each case is extremely complicated in it’s own way. We are thankful for the teams of doctors and nurses that are caring for them.
Dear Lord, we thank you for the gift of doctors, nurses and all those in healthcare. We pray for their wisdom, compassion, and strength as they care for their patients. Guide their hands and minds, grant them perseverance in difficult cases, and help them to find direction and satisfaction in their work. We ask for your blessings and well-being upon them, their families, and their patients. Amen.
-Darcy
Psalm 55
Listen to my prayer, O God, do not ignore my plea; hear me and answer me. My thoughts trouble me and I am distraught because of what my enemy is saying, because of the threats of the wicked; for they bring down suffering on me and assail me in their anger.
My heart is in anguish within me;
Evening, morning and noon I cry out in distress, and he hears my voice.
A brand new day! I heard on KLove yesterday that Easter reminds us of the new life we have in Jesus. God continues to heal Seth’s body one cell at a time. 2200 One of his drs stopped by and the nurses talked to him outside the room. They updated him that his BP’s are a little higher (>160). At the time he was maxed out on his Esmolol. Order received to call the doctor through the night if unable to go down on this, if Hydrolozine was given (on top of other 2 BP meds he’s on) and BP was still >160. This morning he is on Esmolol 100mg instead of 300mg. Nurses said that the Neuro team would like to get him off his drip, so they may play around with his BP meds today. 2230 Last night one of the trauma nurses stopped by to check on Seth. She told him, “Seth, the trauma nurses came to check on you. Glad you got your bolt out!” 2335 Some of his electrolytes were low, so they gave him supplemental Magnesium, Phosphorus, and Potassium. Sodium levels were all good, at 148, 146, and 148. Neuro wise, he is still trying to bite on the suction when they put it in his mouth. This morning, his gaze would go to the right and to the left (as before). At 0520, he opened and closed his eyes. Nurse asked him to squeeze her hand. He didn’t respond, but she said he’s been here for a while, so he may just be too weak as well. Temp was up in the eve to 37.8, but is normal this morning. WBC count is 28, so just barely changed from the 27 yesterday. 0145 I woke up to 4 people standing around his bed. Turns out this doctor was just doing rounds. Nothing else dramatic like last night. 0525 Tidal volumes down on the ventilator (from 50-60’s to teens and 20’s) meaning Seth is taking less deep of breaths. They had to go up on the ECMO sweeps from 6 to 7. So currently, it is doing more work for him. Nurses called the doctor and she came in, who changed the chest xray to stat. Could be that they may just be mobilizing some of the fluid in his lungs from repositioning etc. Nurse checked that his chest tubes were draining, and they are. SPO2 stats still good 92%. 0610 Doctor that rounded in the middle of the night came back and said his xray looked more “whited out.” Want to do another broncoscopy now to help clear some of that fluid out of his lungs. 0635 Nurse came and got me and said they were done with the procedure. They did get some fluid and mucous plugs out. Gave him a little Propofol for sedation during for comfort (will not stay in his system long).
Prayers for today:Improved tidal volumes of lungs More signs that Seth is waking up Stable BPs Lung infection to clear
-Aunt Kerry
PS, Kerry has been so amazing with helping with night shifts, day shifts, taking detailed notes and explaining all these medical issues in layman’s terms. When doctors and nurses ask if we have any questions, we all turn our heads towards Kerry because she always knows what to ask. Kerry is my younger sister by 2 years and is a NICU night nurse, which is why she can stay up all night and keep good watch. We all love you, Kerry, and thank you from the depths of our hearts for supporting us during this time.
Seth had a pretty low key day today. Tonight they are keeping an eye on his BP that is a little elevated. He’s on 3 different BP meds and a 4th that’s given as needed to keep his BP <160 (parameter used to be <150). I’ve been told he was hypertensive before the sedation meds, so just residual effects of his brain injury.Temp is elevated at 37.8 Celsius. The nurses exchanged the water out of his ECMO machine to help cool him off more. He’s on the same 2 antibiotics that he’s been on the last 3 days. The sensitivities showed that they should cover the bacteria that was growing in his bronchoscopy culture a few days ago. So just need to be patient and let them work.Seth is still off all sedation meds, but we are waiting for them to get completely out of his system so he’ll start waking up more. Still receiving Dilaudid for pain, as well as Kepra for seizure prevention. Most meds they dilute and give him through his NG tube. Fewer drips now than before.Sodium level was 145 at 5pm, and this evening was 148. His parameter is 145-155, so right where we want it. They are checking less often now, every 4 hrs instead of every 2 hrs.He’ll have his routine chest xray in the morning. He’ll open his eyes just slightly, but not on command. He has a cough reflex too when secretions start building up in his trach tube.He has 3 nurses tonight, including another one learning how to do ECMO. One of them told me I could watch the TV in his room if I wanted (but I won’t). Waiting for Seth to tell me what he wants to watch. I think I’ll read him some poems that his friend, Emma wrote as his bedtime story.-Aunt Kerry
PS, We’ve been blessed to receive meals at the hospital which we eat in the healing garden. Tonight’s delicious meal came with a small thoughtful gift of 5 stones with Bible verses on them.It reminded me of the biblical history of David and Goliath, where David, armed with five smooth stones and his sling, defeats the giant Goliath. The stones represent David’s reliance on God’s strength and guidance rather than his own physical capabilities.May we also rely on God second by second for strength and guidance.-Darcy
Dr came in he said hole in lung has healed up and it’s been a few days. He says pneumothorax is slightly worse today but better than several days ago, he expects it to go back and forth. He said that he thinks the lungs at this point are not the limiting factor at this point and he is optimistic they will heal. They did ultrasound of his liver and spleen today just to check (results pending). He also said Seth looks like he is coming to himself and is starting to show facial expressions. His respirator shows that he is breathing 70 ml of air. We need that to start hitting triple digits.
Removed EEG, so that means they can shampoo his hair sometime.
Ideally, sedatives will be worn off within next day or two and Seth will be awake and conscious. He’ll likely be very disoriented and not himself. After getting to assess his brain while awake, they’ll move forward on what to do and whether or not to keep him off sedation. Nurses and Drs also noted that Seth is blinking a lot more with his eyes closed since last night.
On another note, orange chicken is being served in the cafeteria today. Seth would enjoy that!
