Dr came in he said hole in lung has healed up and it’s been a few days. He says pneumothorax is slightly worse today but better than several days ago, he expects it to go back and forth. He said that he thinks the lungs at this point are not the limiting factor at this point and he is optimistic they will heal. They did ultrasound of his liver and spleen today just to check (results pending). He also said Seth looks like he is coming to himself and is starting to show facial expressions. His respirator shows that he is breathing 70 ml of air. We need that to start hitting triple digits.
Removed EEG, so that means they can shampoo his hair sometime.
Ideally, sedatives will be worn off within next day or two and Seth will be awake and conscious. He’ll likely be very disoriented and not himself. After getting to assess his brain while awake, they’ll move forward on what to do and whether or not to keep him off sedation. Nurses and Drs also noted that Seth is blinking a lot more with his eyes closed since last night.
On another note, orange chicken is being served in the cafeteria today. Seth would enjoy that!
2:15 am Seth’s blood pressure dropped significantly in the 90s systolic. In a moments notice, 7 people were in the room. Echo done-ok, X-ray done-ok, Chest tubes-ok, ECMO-ok. Sodium 143. He was given epinephrine and sodium twice. BP then spiked (217/95) and eventually stabilized with BP med. They were perplexed why this happened when everything else looked ok.
7:00 am Propofol (for sedation) is off and is only on Dilated (for pain). There may some “neuro storming” which is his brain reacting to everything and responding to stimuli.
8:00 am Resident Dr said his BP has bounced back from last night’s drop. He’s making good urine, blood culture came back negative, but bronchoscopy showed culture is growing some staph (he’s on 2 antibiotics now and they will adjust when they get a clearer sensitivity result for staph).
WBC is 27 (yesterday it was 20); as long as he’s not looking clinically worse, they are ok with it for now.
Cell by cell.
Today is another day that the Lord has made!
-Darcy
I saw this flyer in the restroom asking for items for the behavioral health floor. If anyone is doing any spring cleaning, please consider them.
2:15 am Seth’s blood pressure dropped significantly in the 90s systolic. In a moments notice, 7 people were in the room. Echo done-ok, X-ray done-ok, ECMO-ok. Sodium 143. Given epinephrine when it was down.
I didn’t share this before, but tonight it needs to be told. Two days ago, a technician was humming while she was drawing a blood culture. The nurse and I asked her what it was and she “Lord, if I need you”. There is a song titled, Lord, I need you but that wasn’t the tune I felt I heard her hum. I did some online searches, and to me, it instead sounded like the familiar hymn, I Need Thee Every Hour.
Fast forward to today. We found out there was a piano in an area of the hospital and Seth’s friend, Anika was willing to play for us. She played and sang a lovely song. Then she asked if we had a hymn request and as we were thinking she said, “How about I Need Thee Every Hour? I couldn’t tell if my heart stopped or was about to jump out of my chest, but I knew this was a God moment.
A total stranger hummed a prayer over Seth two days ago and today that same prayer was mentioned, played and sung by his dear friend. Never underestimate how God can put you in someone’s life and you don’t even realize it.
The only thing I would change about this song during this time at the hospital and at Seth’s bedside, would be to change the words from, I Need Thee Every Hour, to I Need Thee Every Second. Our last 13 days here have been measured by getting through second by second, minute by minute and hour by hour. And cell by cell. Please listen to my new favorite song, I Need Thee Every Hour :
-Darcy
Update: Sodium levels are lower than we want. The EMCO is still working good without him being on an IV blood thinner. Our nurses are wonderful!
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.
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! 😁
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.
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
