Author: hannah

11pm (Thurs) Temperature is 99.5, and was low grade last night as well nurse said. They are giving him Tylenol to help with some tremors/shakes that he’s been having (that I haven’t noticed this evening). Is probably helping to keep his temps down. His BPs and heart rate are better tonight than I’ve ever seen. His heart rate had been 100 or higher and it’s in the 70’s tonight. Nurse said he’s still on multiple BP meds. But I’m still so proud of him!

Seth’s sputum culture from a previous broncoscopy tested positive for cocci (Valley Fever- fungus) and nocardia (bacteria). The nurse tonight said that we would all probably test positive for Valley Fever if we were tested, but may never show symptoms. It can manifest itself more when we are immunocompromised.

He is on an anti-fungal medication and an antibiotic to treat both of these.Earlier this evening Seth received another unit of blood when his hemoglobin level went below 8 (his was 7.8). They still do routine blood work on him every 6hrs through his arterial line, and his coagulation labs more frequent than this.They have yet to do a CT scan since they started the Heparin. The nurse said that he is receiving a “neuro dose,” meaning that they are going cautiously slow on titrating it up. Need to get two therapeutic levels before they’ll do the imaging.

He still has been requiring albumin for volume replacement most shifts. This evening he hasn’t required it yet.He is tolerating the adult mode on the ventilator and his tidal volumes are around 320-330.

0345 (today) Got his morning chest xray a little earlier. Tidal volumes 380-407 this morning (great). I think he looks like he is retracting less. Still is tremorous. He hasn’t had Tylenol since last night. Nurse isn’t sure if it helped or not. Nurses doing passive range of motion this morning with his feet, hands, arms, and legs to keep his muscles going. First time I’d seen them do this with him to this extent. He has washcloths in his hands to keep them from clamping down. He got a shave with his bath today. Hemoglobin was 8.2 this morning, so better! His coagulation labs are getting close. They were 0.1 below therapeutic range. Will recheck @ 0800.

Seth’s ECMO sweeps are at 2. His blood gases have been stable, but they have not been able to wean beyond that just yet. 0630 Dr Yu came and examined Seth. Goals: To get CT done, continue to wean ventilator settings and ECMO. Has not seen chest xray report this morning.

Prayers for the day

1) Seth’s body to respond well to the anti fungal and antibiotic he’s on

2)Therapeutic coagulation labs

3) Motor movement & increased responsiveness

4) Good chest xray results

5) Seth and his family to feel Gods loving arms around them

6) Continued prayers for Seth’s cousin, Ellis in Malaysia who they may try to take off sedation today. His MRI results were good, as well as brain pressures, and no further seizures. Praise God!

I heard this on the radio on my way into the hospital tonight. When I looked it up, and watched the music video, it reminded me of the army of people Seth’s had in the waiting room and the even bigger army praying for him, and our even bigger God!

-Kerry

Cell by cell.

-Darcy

1  Praise the Lord, my soul;
    all my inmost being, praise his holy name.
2 Praise the Lord, my soul,
    and forget not all his benefits—
3 who forgives all your sins
    and heals all your diseases,
4 who redeems your life from the pit
    and crowns you with love and compassion,
5 who satisfies your desires with good things so that your youth is renewed like the eagle’s.

Lord God,

You are worthy to be praised and your blessings & mercies are uncountable. 

Yet we ask for your healing miracle to be given to Seth & Ellis. Only you, Lord, understand what needs to be healed. Only you can grant healing in the way that Seth & Ellis needs. Please, Lord, grant this to our son.

Grant this to your servants, Seth & Ellis.  We pray in Jesus name, Amen. 

-David

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.

-Darcy

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.

-Aunt Kerry

Psalm 147 (selected verses)

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.

In Jesus name we pray, Amen.

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

PS, Picture for cuteness 🙂

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.

(Inspired by Psalm 6.2-3)

-David