Labs still showed that Seth hadn’t reached therapeutic levels of Heperin in order to get CT scan. An AT3 test was done to test if he has a resistance to the Heperin. Blood test came back normal, so they will just wait a bit longer. He’s being given more antibiotics for stuff in his lungs. His BP was low so they gave him more fluids to help pressure. We will take today as a healing day.
Tuesday night, Seth was recognized and prayed for at Arizona Lutheran Academy’s Senior Night baseball game at Tempe Diablo Stadium. He will love knowing there was swag for him! He’s usually making the swag of himself for us! (Pix attached of Hannah wearing a shirt and necklace that he made of himself for Christmas gifts). Thank you to the team moms that helped organize this! The link below is of a news clip aired on AZ Family of that night:
Specific prayers:
Good coagulation labs
Healing lungs
Increased neuro response
Seth’s cousin Ellis who is fighting a life threatening virus and bacterial infection in Malaysia (pix attached)
-Darcy
PS, My mom’s Bible study today was God telling Moses and Israelites to march forward through the sea. “God doesn’t operate in the realm of man’s thinking. He doesn’t always show Himself in accordance with our sense of wisdom or logic or ideas of what is right. He calls us to believe in Him & in His promises and He expects US to expect HIM to work things out according to His plan. God is God. He has us on His heart and mind. He’s given us His inviolable promises” and we trust in Him. Whatever “Red Sea” you are facing, know that God is with you before, during and after.
Seth’s coagulation labs are not within therapeutic range yet to proceed with the CT scan. His Heparin drip will continue to be titrated up until they get his labs where they want them. His nurse thought that his right arm looked less swollen today (good).
They attempted to change Seth’s ventilator mode from pediatric to adult settings with higher flows, but he did not tolerate it. Just tells them that he’s not ready to be weaned off of ECMO yet. They’ll try again possibly tomorrow. His tidal volumes are better each day, in the low to mid 300’s.
Neuro said that when they are able to get him off of ECMO, he’ll go to a rehab for strengthening and rehabilitation.
Prayers for tonight:
-Therapeutic coagulation labs
-Stable CT results (when they are able to do it)
-Continued healing for Seth’s brain
-Peace and rest for Seth’s family
–Our nephew, Ellis… that the drs would find out what is wrong with him to know how best to treat.
Praise the Lord. How good it is to sing praises to our God, how pleasant and fitting to praise him!
He heals the brokenhearted and binds up their wounds.
Great is our Lord and mighty in power; his understanding has no limit.
Lord God, We give you thanks for the blessings of healing that you have provided thus far. The medical teams, the marvels of medicine, and the life sustaining miracles for Seth are truly an answer to our prayer.
We also lift up Ellis tonight who is in need of your merciful care. Guide those providing his care that they may discover a positIve course of treatment for him.
Continue to grant bith Seth & Ellis an extra measure if your healing and resore their health according to your unending grace.
Late yesterday evening, one of the Intensivists came in and said that his RT arm ultrasound did actually show more than a superficial clot. They consulted the Neuro team again, who agreed that it’d be safe to start blood thinners. Heparin drip started. Sent baseline coagulation labs just prior. They will closely watch his coagulation labs every 6 hrs to see if he’s tolerating the Heparin (and that blood has the right amount of clotting factors, and doesn’t get too thin).Intensivists rounded again at 5am Looking at the P- Venous pressure on his ECMO machine that shows that this is slowing down. Likely that Seth is just volume depleted again. He received 500mg of Albumin through the night total, but drs want to give him 500mg more to replace the fluid he’s lost. He’s put out over 2L of urine tonight, and is in the negative for fluids lost in the last 6-7 days. Did a bedside ultrasound to check his cannula and everything looked good there. Drs are happy that he’s on Heparin now to help the machine run better.
No adjustments made to “sweeps” on ECMO machine (how much CO2 is being pulled off his lungs). Still has been at 3 since about 11:15pm last night. They can tell if he’s tolerating the wean by his blood gas results (looking at PH and CO2 levels). Will continue to check those every 6 hrs.
Seth will get his morning chest xray soon to see how his lungs are doing. BP has been good 148/68, temp 37.1, SPO2 97%. Maybe got one extra dose of BP meds through the night, besides his usual. Tidal volumes this morning 290-328. Nurse mentioned they might check him for Diabetes Insipidus again, looking specifically at his response to the antidiuretic hormone because of his high urine outputs again. Dr rounded from internal medicine. Happy with tidal volumes. No orders received. Nurse told him that after two therapeutic results on coagulation tests, will get a CT scan. The one this morning @ 6am was sub therapeutic (not within range yet), so Heparin drip was increased, (and doesn’t count towards getting two therapeutic labs). Earliest CT would be done is on nightshift tonight. Nurse said that the last two nights, his BP has been more manageable. Brain stem reflex is still good. Meaning he reacts when someone gets near his eyes (closes them), gags with the suction catheter, and coughs when they suction his trach. Pupils still reactive, more equal tonight than last night. Will give him a calcium supplement today for a low calcium level (that he’s had before). Other electrolytes not back yet.
-Aunt Kerry
Lord, thank you for the doctors and nurses that are doing everything they can for Seth. Please give him strength to keep fighting. All is well with our souls, but we implore you to make his physical body well on earth too.-Darcy
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.”
Awesome news, EEG came back fine with no seizure activity. Seth got a shave today. Central line was taken out as they don’t need it anymore. CT scan looked stable and it looks as if the previous bleed was reabsorbed. We consider this a healing day…cell by cell, of course. The first picture is of a plane trip to Oregon last year. Seth loved to travel to far away places, mostly on family trips or to dance conventions. (Although he gets carsick so he never liked driving long distances, just like his mom). His phone showed he was tracking flight prices to Berlin but was also thinking of going back to Malaysia or anywhere, for that matter. He is a very good planner and when he has his mind set on something, he can make it happen. When I took this picture, we were joking that it looked like he was looking into the future.We don’t know what the future holds for any of us. It’s easy to trust in God when we are content or things are going good. My prayer is that your faith is continually strengthened so when your future is turned upside down, you may experience the comfort, hope, and peace that Jesus offers. That is the Easter promise.
-Darcy
PS, The second picture is a memory that popped up from almost 2 years ago to the day that he received his new passport.
O God, Heal me, Lord, for my body is in agony. My soul and my mind are in deep anguish. How long, oh Lord, how long? Lord God, help us to be patient in this difficult time. Yet we beg you to heal Seth, restore him to health, and if pleases you, grant him a full recovery according to your will. Bless him as he slumbers this night, In Jesus Name, Amen.
Had a good night, just still trying to find the right combination of oral BP meds. Leah said it can take a while. Dr stopped by around 3:15am and restarted Esmolol for his BP. His heart rate dropped with it, so they stopped it. They gave Labetolol instead IV push to bring his BP down. Dr stopped by again around 5:10am and gave the nurses an order to start a different BP drip called Nipride if needed this morning. It is a med that can be titrated in smaller increments (unlike Esmolol). Still wanting his BP <150, and he’s been running around 160-170’s off and on overnight (with a higher heart rate as well).
Seth went for a CT scan of his head this morning around 4am. There was a whole team of at least 6 people that went with him again. They are following up on his last scan done on 4/15 to check his previous head bleed. Should get the results back this morning. His tidal volumes yesterday evening were 120’s to 130’s. This morning they are 170’s to 184! RT had to adjust his parameters because he was going higher than the limits previously set (great!) He had his chest xray this morning around 5:30. He’s tired now after all the tests done this morning. Labs are being done every 6 hrs still. All looked good this morning, except he may need some extra calcium. His WBC count is still trending down (21 in the evening and 19 this am- better!) No fevers. Sodium levels all normal now (141-142).
Nurse said they are planning on doing an EEG today now that he is off all sedation. This is all precautionary to check for seizures (not that they are noticing any). His pupils are still reactive. It’s a new day, a new week, and with Easter just behind us, we rejoice in the peace and hope we have in Jesus!
Prayers for today:
BPs to be better controlled
Stable CT results
Improved chest xray results
Tidal lung volumes continue to increase
Neuro motor responses to come back
Good EEG results
-Aunt Kerry
We are adding Seth’s cousin, Ellis to our prayers today. He is being admitted to the hospital as he’s terribly sick with high fever and other symptoms.
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.
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.
