Seth is off all sedation now; although it’s still in his system so it’s still early to tell how things are. He’s still on pain and blood pressure meds.CT scan today was unchanged.A dance friend’s church made us several prayer shawls (thanks, Jim & Lise) and brought them to the hospital. The nurse found out and said it was ok to put over him. What a nice comfort to know that he’s covered with the prayers of so many and covered with Jesus’ love.-Darcy
Neurology Dr and team here. The EEG wasn’t showing remotely but it’s showing activity on screen. The EEG people came to fix the monitors on his head. His eyes are gazing right which he hasn’t seen Seth do before, so they may do another scan (it’s not scheduled yet, so maybe they will wait to see if it continues). It could be seizures or other brain related thing. Sodium is still low (144) so he ordered another bolus. We need to get his numbers up so the brain doesn’t swell more.
Specific prayers today:
That any head scans look clear
Sodium levels increase
-Darcy
Tuesday morning 4/15
WBC count yesterday eve down to 21 from 35 yesterday. Temps through the night 37.2- 37.7 (100 degrees Fahrenheit). Seth’s blood culture so far is negative, but his sputum culture from his broncoscopy is positive for gram positive rods. They have him on two antibiotics that should cover for gram pos and neg rods (most bacteria). The lab is running sensitivities on his culture to see exactly how best to treat it. They gave him some Tylenol for his temperature tonight. They are able to either take the lid off the ECMO machine to cool off the water that changes to his body temperature and/or change out some of the water to help cool him down a little.
Nurse said that he should be weaned off of Versed entirely by today, and most likely his EEG monitoring. Still will be getting Propofol and Dilaudid (sedation and pain meds).
His sodium levels on their Istat machine on the unit have been 141-142. These can be lower than the serum values they send to the lab. To treat this, so it didn’t get too low, they gave a bolus of Sodium 3%. The serum one in the evening (more accurate) was 147, and was rechecked at 0430. Range they want is 145-155. Sodium levels are done every 2 hrs, and all other serum labs are every 6hrs.
When we talked about his trach tube, the nurse said that it is going to be so much better for him. He’ll be less agitated, less likely to pull it out, and will be more mobile. Is a normal progression after being on a ventilator for a while. He could potentially stand and walk around with his trach and his ECMO machine. Also he’ll be better able to talk. They have “trach masks” that can cover the hole to allow him to speak. With a trach tube, he wouldn’t be able to do this bc it interferes with the vocal cords.
I asked the resp therapist about the breaths that it looks like Seth is taking. He is still on a pediatric mode with “rest” settings, which means lower tidal volumes. He is breathing over the ventilator and taking “baby breaths.” His breathing is faster this morning, but could be due to his fever.
His blood pressures are more controlled now. He’s on two different meds for his heart rate and BP. I was told the other day, when he comes off the sedation, it’ll be like he’s “running a marathon again.” They warned us that all his numbers could go up.
I just love how the nurses continue to talk to him and tell him what they are doing, even though he can’t respond. This morning Carel said “Seth, you’re in the hospital, but you are doing much better. You are safe and your family knows that you’re here. Your aunt is with you right now.”
I tell Seth how proud I am all the time, and I am amazed at how strong his body is. God made us this way for a reason, each one of us. Through these different times at the hospital, I am reminded of the following Bible verse, “I can do all things through Christ who strengthens me.” I got through another night while listening to Christian songs on YouTube (sorry not PitBull, Seth).
Will wait for all his different teams of doctors this morning for more updates and changes. One minute, one hour, one day at a time and healing of his cells one at a time. Seth is worth it!
6:47am – WBC count is higher this morning (27 compared to 21 yesterday). Can go up with infection/inflammation. Temperature is down to 36.9 (98.5). Carel says they could possibly do another blood culture today. But will see what drs say. Sodium is 142 (serum), so giving him a second sodium bolus. No one has rounded yet.
7:11am – “Doogie howser” stopped by today. He’ll be rounding with Dr Chu later. Will look at chest xray results. No bubbles on chest drain, so does not appear to have any more “free air” in that pleural space. Versed is at a really low dose 0.2mg. Will watch for heart rate and BP to go up as he comes off more sedation. Waiting for sensitives to come back from his broncoscopy sputum sample and watch temp. Will continue to follow sodium levels today. Overall said, “from a lung and ECMO perspective, he’s doing really well.”
Carel was singing/humming the song “Hero” to him this morning
We are happy to report that it’s been an uneventful day since Seth had his trach tube inserted this afternoon. It’s so good to see his handsome face again and that mustache and beard that he loved!
They continue to wean his Versed down. They added Propofol for sedation as well, which has a shorter half life. Someone on this can wake up within mins of turning it off. So their goal is to get him on something that won’t stay in his system so long.
After chasing his high sodium levels are days, it is now a little low, so they are watching that.
Interesting fact, Seth is the only one on ECMO at this hospital right now. So he has two nurses (& an orientee) whose only job is to take care of him. He has lots of different teams following him that check on his progress throughout the day. We love it when they ask about Seth and his interests. They are amazed that he’s a world champion swing dancer!
-Aunt Kerry
PS, Zoe the therapy dog came through the waiting room today. Seth always wanted a dog but we got guinea pigs and a bunny instead. He’s going to crack up when he reads this and sees these pictures! 😁
-Darcy
Seth’s tracheotomy went well! The nurse said he’s doing great!! He looks so much more comfortable now.
Now they are going to put the feeding tube down his nose instead of his mouth. Yum. I told them to make it double cheeseburger with extra pickles flavored.
We have a MealTrain set up now. Text or message one of the Meyers for the link.
-Hannah
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.
-Aunt Kerry
Quick update before doctors make their rounds. During the night, the EMCO alarm went off because of coughing and a bath. Nurse was told to hold off on IV for now. Oxygenator numbers are about the same as yesterday. X-ray taken. WBC 36 yesterday, now 26 (Yay! Keep praying for that!) Sodium @ 4am 150.
Nurse from yesterday is back. She just brought me a warm bagel, cream cheese and OJ.
Please see the new 5th floor prayer board. The unit is full of patients not just these 4. Most likely we will add to this list as we meet more families in the waiting room.
Todd – Will be put on a waiting list for a liver due to autoimmune complications
Vincente – Has cancer
Silverio – more to come
I hope to give an update on 4th floor soon.
-Darcy
6:20pm
Bronchoscopy done. Tried clearing as much as they could out of lungs, but Seth didn’t like it so couldn’t clear completely. But got enough to sample and test; won’t get results for a couple days.
More often than not, people on ECMO are started on IV blood thinners earlier so machine can work properly and give the best oxygen. But with Seth’s brain injury, that was in question. The machine level was a bit lower than yesterday so neuro deemed it ok to do CT.
If CT looks good, they’ll start on IV Heparin. Based on discussion w/ neuro team, they can start on low dose and go from there.
Waiting for radiologist to determine results of CT scan
No clots shown on ultrasound (yay)
Specific prayer: Good CT scan, that antibiotics keep working hard, healing lungs!
Pix is of the sunset tonight while eating outside the cafeteria. God shows his beautiful creation even in the midst of despair.
-Darcy
The Lord is my shepherd, I lack nothing.
2 He makes me lie down in green pastures,
he leads me beside quiet waters,
3 he refreshes my soul.
He guides me along the right paths
for his name’s sake.
4 Even though I walk
through the darkest valley,[a]
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
6 Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
They are fine with his SPO2 readings because the ECMO settings he is on that is taking care of all of that. They could possibly do another Broncosopy later to help clear his lungs. That is using that scope to get down in his lungs better. They send a sputum culture, but if they could get in his lungs deeper, they would send another. WBC count went from 17 to 28 today. So worried about infection somewhere. Will follow the blood culture and sputum culture and watch for bacterial growth there.
Update: Fellow ICU Dr said they are going to do broncosopy now.
-Aunt Kerry
Specific prayer: Healed lungs and no infection!