From Erin: Reuben and I met with Dr Hwang, Ellis’s pediatrician this morning. His EEG indicates encephalitis. He responded favourably to his first small dose of Immunoglobulin (IVIG) so they will increase the dose and give it to him over the next four days. She said when she came into his room this morning he opened his eyes and looked at her (much better than yesterday, which means the seizing stopped, he is on antiseizure meds right now and for the near future). She wasn’t happy with him being that awake though and told the nurses to increase his sedation by a bit to help his brain rest. The MRI results from yesterday are good and indicate no swelling in the brain – a very good thing to hear. The nurses in the ICU told us we couldn’t be in the room with him but Dr Hwang said that that was nonsense and we can stay with him, but not for prolonged periods of time. Dr Teh, the pediatric neurologist, will be in around lunch time (which means 1-2pm here) to meet with us. He works at GH (the govt hospital) but comes here daily to see patients. So overall a relieving report for us as of this morning. Thank you everyone who has been praying and please continue.
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.
We will have an update on Seth later, but right now we need lots of prayers for our nephew, Ellis (age 11), in Malaysia.
From my sister, Erin: Ellis has been admitted to our hospital due to fevers since Monday evening. At first treatment with antibiotics he seem to be getting better but his fevers have been coming back due to some infection in his body. Tests have ruled out Covid, dengue and other common viral infections. Erin has been with him last night and reported that he has not been quite responsive and may have had a seizure and had received medication and been observed by medical staff. We’re not sure what he has. So we’re asking you to uphold him in your prayers. We trust in the Lord and the comfort in Him that He alone can heal and restore Ellis.
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
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 rejoice on this easter morning that Jesus defeated powers of death and given us new life in you! In your earthly life, you gave a forecast of what is to come as you performed miracles, heal the sick, raised the dead, and through these gave your people a glimpse of your power and that which is to come in heaven. On this easter morning, we ask for your miraculous healing to be upon Seth. Continue to heal his brain, his mind, his heart & lungs, and all his body that he would grow stronger each day and return to his normal life serving you in christian joy. We ask this in Jesus Name, Amen.
