Seth is continuing to fight and is showing Gods presence once again. His ECMO machine has been on the lowest possible setting for almost 24 hours now. This means he has been breathing adequately on his own with the help from the ventilator. If his blood gases continue to be in a good range, the surgeons will start thinking about removing the ECMO machine and possibly one of the chest tubes. His blood pressure continues to be a balancing act, but is closely monitored and treated by his very talented nurses and doctors. Cell by cell. Prayer by prayer.
-Ben
As we anticipate Seth being taken off the ECMO soon, he will be getting his first MRI. This will give us a better look at the extent of his brain injury. Please, please start praying for good news on the scan and for his brain to heal. The doctors keep reminding us there are a lot of unknowns in Seth’s recovery. But we know that God knows what his future holds. All of Seth’s days (and our own days) are in His hands. Something I read today says it perfect: We have nothing to fear and everything to hope in because of Jesus.
It was a very relaxed day, per his nurse Ryan this evening. His lung X-ray this morning looked better overall. Seth had an ultrasound done on his right arm this afternoon because it appeared more swollen than the left, They did an ultrasound and found a clot that they need to monitor. As a response, they will start him on IV blood thinners. They will start at low dose, and then do a CT scan to see how it is affecting the brain.
Dr. Malakoff from neurology came and held his fingers in front of Seth’s eyes to see if he would blink. Seth blinked the first time, but on subsequent attempts, he only gave a partial or weak blink. The doctor wasn’t sure if that was a true response. He eventually deemed it a non-response at this point.
Seth’s eyelids are open like normal right now. He’s also grinding his teeth a lot. They gave him pain medication earlier to see if it was due to discomfort, but he continued to grind his teeth. The nurse said he can’t wear a mouth guard due to the risk of swallowing it.
His kidneys are working well. Today, he’s putting out almost too much urine again, so they gave him some albumin earlier and again tonight. If his fluid volumes get too low, it affects the ECMO machine.
Yesterday was the best day for his blood pressures, but today they’ve been chasing them again. He’s on 3–4 blood pressure medications to help keep them lower.
His tidal volumes are much better on the ventilator today, upwards of 313 tonight. There isn’t a max target for this number, as long as his blood gases and oxygen levels are good. His “sweeps” on the ECMO machine are down to 4 now (they were at 6.5 two nights ago). This is all positive and part of the process of weaning him off the ECMO.
It’s gonna be a good night. I told Seth, “Jesus loves you.”
We are grateful for another stable day for Seth. His lung tidal volumes have been between 120-140 ml today; double what it has been. Furthermore, his SpO2 values were between 85 and 94 and his Xray showed a little better aeration in the lungs. Otherwise, not much news, no changes in doctors orders.
A few days ago, I had mentioned how applicable the song “I Need Thee Every Hour” is during our time in the hospital. However, I thought that the song needed a slight change to be “I Need Thee every Second.” A good friend, Tom Bernthal, saw my suggestion and created a new rendition to it with some specific prayers for Seth included. Below is a link to the song and the comforting lyrics.
– Darcy/Ben
I need You every hour, Most gracious Lord; No tender voice like Yours Can peace afford.
I need You, oh, I need You; Every hour I need You; Oh, bless me now, my Savior! I come to You.
I need You every minute Your cross, my shield; No foe can snatch me from The love that Jesus sealed.
I need You, oh, I need You; Every hour I need You; Oh, bless me now, my Savior! I come to You.
Seth needs You every second He is Your precious lamb; Baptized into Your Name, Safe in the great I AM.
I need You, oh, I need You; Every hour I need You; Oh, bless me now, my Savior! I come to You.
I need You every moment Send angels near; Let not the evil one Come whisper fear.
I need You, oh, I need You; Every hour I need You; Oh, bless me now, my Savior! I come to You.
I need You every cell— Each breath, each beat; Restore what’s hurt and lost, Lord, make Seth complete.
I need You, oh, I need You; Every hour I need You; Oh, bless me now, my Savior! I come to You.
Nurse Lynne said Seth is doing so much better today! His vitals are much more stable and oxygen levels in the 90’s (were 70’s yesterday) They think he’s responding well to the antibiotics and the broncoscopy he had yesterday.
Seth’s sodium level is in the 140’s. They are still checking it every 2 hrs. They don’t want it to drop too fast. Parameters are 145-150 now. He still is getting his Esmolol for his BP because it was high yesterday, but have been able to wean it down a lot today. Will be adding Propranolol today, so they can get him off the Esmolol. Precedex that was added yesterday for sedation probably helping. Will get blood culture and sputum culture preliminary results back later today.
The Neuro team says his CT scan from last night is stable. They are opting to not start the Heparin drip for now, because his ECMO circuit is still running ok. If it’s needed to help the ECMO, they are okay to start it.
Dr Chu rounded and also said that he’s happy Seth is doing better today! He’d like to have a tracheotomy tube placed today before all his sedation gets weaned off. This will be his new airway that will be more comfortable for him and can stay in longer while we wait for him to wake up. That will be done in the next few hrs.
Pray
Safe insertion of trach No seizures as he comes off sedation Good lab results Negative culture results Stable vitals
Dr Chu asked this morning “what is one thing that Seth likes to do?” Ben told him he liked Pit Bull and that he is a world champion swing dancer. He was impressed and stated he did not expect that from an 18 year old. He then told Seth “ok, we got to get u better, so u can get back to dancing again!”
Seth’s sodium level is 140 (great!). They are still checking it every 2 hrs and doing free water flushes. She thinks the order will get changed today, so maybe change to every 6hr checks with his other labs. He still is getting his Esmolol for his BP because it was high yesterday, but have been able to wean it down a lot today. Precedex that was added yesterday for sedation probably helping.
Neuro drs rounded. They feel like the CT scan is stable. He had 2 small bleeds last week, one on each side? His ECMO circuit is running ok, but if needed later, they are ok with starting heparin. Will start weaning Versed today, 0.1 every 2 hrs. Yesterday they had told me that they would be watching him closer for seizures with the weaning. Adding a beta blocker for BP.
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.
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.
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.
