SUNDAY - FEB 24 2019
TUE - FEB 19
2/16/19, Saturday, more... Other than Saturday's Tracheostomy and MRI, everything else stayed steady... wakeful, initiating all breathing and vital signs remain good. Rediscovering her mouth and tongue now that the Endotracheal tube has been removed.
2/16/19, Saturday, more... MRI showed little change and have a consult in for Neurosurgery, to see if they see any reason to intervene. Otherwise likely to go back to Long Term Care at Select Tuesday, or at least sometime soon after.
2/17/19, Sunday... Very good day. Moving along getting used to the Trach and weaning off any support/supplement the ventilator was providing. Probably back to Select Monday or whenever otherwise ordered (still waiting for that on Tuesday) .
2/18/19a, Monday... Still @ WFH in ICU1 (2nd floor). Will eventually return to Select, but no timeline for that yet... Lynne's doing good. Not sure when transport back to Select will occur... maybe Tuesday, or who knows. Trach has made a big difference for Lynne. Now off the ventilator, but still supported with some oxygen. Vitals stable and good.
2/19/19, Tuesday, Probably safest to call before visiting, just to make sure where we are.
THURS - FEB 14
NOT GOOD NEWS
We're at WFH ICU2 (2nd floor). I'm afraid Lynne's liver may be failing, and that most likely means discontinuing treatment and looking at palliative care. I'm waiting on one more check on the lab values before I make a decision, but I'm struggling with it. Keep me and Lynne in your prayers!
And then the next Dr says he will do another MRI and depending, may still recommend doing a tracheostomy, but forego the PEG/Stomach feeding tube, and let her liver do whatever it will now or some other time. Vitals and breathing and wakefulness are still going strong. I'm all about optimism, but this rollercoaster is rugged! Seems like Hope is still vying for a place in line though!
WED - FEB 13
2/13/19 p.m.... Currently arranging transport to West Florida Hospital, ICU5 (on 2nd floor) sometime this evening. Not sure how soon the transport will occur. Not sure when they'll remove the endotracheal tube, place a tracheostomy, feeding tube, etc, either, or how long they'll hold her there before returning to Select Specialty Hospital (I'm assuming). More as I know more.
FROM 2/13/19 a.m....
PT has Lynne sitting in a chair right now and looking out the window into the trees and sunlight, very alert! It's a good morning!
Tuesday Feb 12
2/12/19... Lynne had a similar day to yesterday with responsiveness and wakefulness. Ammonia was slightly elevated, but not an issue that would cloud her wakefulness. Didn't get PT attention to sit bedside or in a chair today, but did get some limb exercise. Will probably be scheduled and transported sometime in the next 24 hrs to West Florida Hospital for removal of the endotracheal tube and placement of a tracheostomy and probably also a different sort of feeding tube. Then likely back to somewhere in Select Specialty Hospital. Nothing certain on any of that yet. I'll update on our changes of location as soon as I'm aware. Thanks for your continuing prayers!
Monday Feb 11
AM The PT Team put her sitting on the side of the bed for a 1bit and got some good eye responses to look in various directions. Now she's been seated in a rolling reclining chair beside the bed, upright and for 1-2 hours before maybe back to the bed. All very responsive compared to trying for that purely lying in the bed. Whoopee!
The Physical Therapy Team put Lynne sitting on the side of the bed for a bit and got some good eye responses to look in various directions. She was then seated in a rolling reclining chair beside the bed, upright and for over 2 hours before getting back into the bed. All very responsive compared to trying for those responses purely lying in the bed. Whoopee! By the end of the day though, she seemed pretty tuckered out, but still responded to some commands, wiggled her toes just a little, but seemed agitated, maybe at the endotracheal tube still in place, or possibly by some confusion/disorientation that might mean her ammonia got elevated... will see in lab results sometime Tuesday. If it's elevated ammonia, that clouds determining what about her wakeful state is stroke and what may be caused by the ammonia issue. Might be in for a Tracheostomy in the next day or so, because that Endotracheal tube must come out. Hope for the best on that prospect, but at least w!
akefulness is close at hand. Thanks for your continuing prayers!
SATURDAY, FEB 9
2/9/19, day 23... More toward wakeful overnite and this morning! Gittin' 'er Done, a little at a time! HOPEFUL! Lynne was trying hard today to attain wakefulness, but didn't quite get there. She would open her eyes wide, turn her head toward the sound of voices, and even lift her head a little. I expect she'll make some progress overnite as the seizure medication continues to leave her system. Still breathing on her own with some supplement of oxygen and her vital signs continue to be good. I'll have her glasses handy if that helps her get her bearings at any point in waking up.
FRIDAY, FEB 8
2/8/19... I think Lynne made progress toward waking up today. She moved her head toward familiar voices numerous times today with her eyes at least partially open. The medical team says she should be waking up, and they further reduced the seizure medication trying to help that along. Lynne's liver metabolism isn't the most helpful with that, but it's still in the game, along with her continuing to breathe on her own (supplemented by some oxygen) and maintaining respectable vital signs. Had an EEG about 4:30-5:30 this evening and the Neurologist was on hand to observe that seizures really weren't a continuing issue right now and the latest CAT Scan didn't show any significant change, so the Brain Bleed has stabilized. He's still expecting Lynne to wake up. That said, if she doesn't pull that off by mid week next week, his prognosis will likely dim. Thank you for your continuing prayers and thank you for your support just to keep up with Lynne and her roller coaster ride!
I forgot to mention earlier, but visiting hours are 8a-10p with the exception of 6p-8p which is report/shift change and associated prep for and after that.
THURS PM Feb 7
2/7/19...There were some PA/Nurse Practitioner visits Wednesday after mid afternoon (for Nephrology/Internal Medicine and Gastroenterology) and an Infection Control Dr dropped by wanting to culture for possible source of elevated white blood cells. The EEG, to see what the brain waves show, is still in for scheduling as of Thursday p.m.. They did a CAT Scan late Wednesday, but I haven't heard yet what it showed. Thursday was really a pretty similar day to Wednesday for Lynne's eyes opening. Thursday the Neurologist said so far that doesn't reflect a cognitive response like wakeful awareness, but both he and the Pulmonologist are still expecting a wake up, so Hope is the Word of the Day! Any rehabilitation efforts will be the next challenge once we get wakefulness and there's something of a shelf life on that to regain as much as you can as soon as you can, so keep us in your thoughts and prayers toward good outcomes there. Thanks so much for all the support you've been providing!
WED am Feb 6
2/6/19... Correction on the Rm#. It's ICU Rm#5, not 6. Cuz'n Martha gave me a very thorough report of 2 Dr visits yesterday evening while I had gone home for just a bit. The Neurologist reduced or stopped much of her medications that could have been attacking the Brain Bleed, but may also have been preventing her waking up too. This morning Lynne is opening her eyes without commands and I'm pretty sure she saw me, moving her eyes toward me. I'm ecstatic, but keeping in mind the roller coaster this has been. Everything this morning seems very hopeful. Will be getting another EEG and CAT Scan today.
TUE, FEB 5
Just general info...
2/5/19... Lynne is now at Select Specialty Hospital, ICU Rm#6. Enter the Hospital front entrance, proceed straight ahead till you must turn right or left. There is a Family Waiting Room right there with 2 entrances. If going to ICU Rm#5, just make a left at that intersection and there's a metal door activation button on your left. Depress that button and the double doors to your right will open. You'll be looking at or into ICU Rm#5. Visitors in the room is limited to 2 at a time. Visiting hous are 8a - 10p. If you happen to go out of the hospital after 10p, you may have to call the security staff to let you back in. I dont expect any change in Lynne's status, but have not asked for an update yet. If there's anything noteworthy, I'll be sure to pass that along.
Oh, Don't forget to log in at the front desk, indicate the room# you're visiting and the time in/time out, and take visitors badge.
MONDAY FEB 4
2/4/19a2... We're waiting on transport to Select Specialty Hospital, anytime now. Will send new Rm# etc when we get there or I know it otherwise. Lynne opened her eyes a little on her own this morning, so that was good to see. Neurologist said though the brain bleed appears to him, based on the most recent MRI, to have increased in size from the initial MRI. He's still wondering what the cause of the bleed is, now considering that it could relate to the possibility of a small tumor not yet detected. The Roller Coaster continues, but I'm optimistic that the eyes opening, even a little, is a good sign. Certainly appreciate your continuing thoughts and prayers
SAT FEB 2
2/2/19a... Still waiting on Lynne to wake up. Vitals good, breathing on her own. Went for for an MRI about mid-day today and waiting for that to be read. Sounds like a Tracheostomy is in the plan in the next few days, just for continued safety with her airway, to be done while she's still @ WFH or possibly after transfer to Select Specialty Hospital in a day or 3 when a bed becomes available there. Your continued prayers always appreciated!
Fri. Feb 1
2/1/19... Seems like seizures are under control, antiSeizure medication still being administered, and no longer in an induced coma... no sedation, so in a postictal state waiting on her to wake up... could be soon or take Hrs, Days, Weeks, just not easily predictable. Planning to assess her for transfer to Select Specialty Hospital, maybe in the next day or 3. Planning for another MRI sometime today. Select can take over where the CCU at West Florida Hospital has been maintaining her in her postictal state waiting on her to wake up, then go into assessing her neuro responses for deficits when she wakes up and plan rehab for there or elsewhere. Select's Web link is: https://pensacola.selectspecialtyhospitals.com https://pensacola.selectspecialtyhospitals.com
Select Specialty Hospital - Pensacola
7000 Cobble Creek Drive
Pensacola, FL 32504
Hrs: 9a-10p, some limit on #s
Phone: (850) 473-4800
UPDATE TUE JAN 29
Sounds great! Today has shown improvement. Going down for a CAT Scan soonish. I'll report progress after I hear from that
1/29/19b... The Neurologist was by and seemed content to keep waiting on the wakeup to remove the endotracheal tube. Did another CAT Scan this afternoon which was basically no noteworthy change. The Brain Bleed has stopped, but there's still some residual swelling/edema. Nothing to prevent waking up. She has moved her head side to side some when stimulated, but not opened her eyes yet.
The Hospitalist was next, and has brought in the Kidney Specialist/Nephrologists to manage fluid issues, like sodium level, fluid retention/swelling/edema, etc. Still hunting the sweet spot for medication to manage ammonia, but its improving.
The Pulmonologist is happy with her breathing, all on her own, supplemented with some oxygen. When she does wake up, he'll manage removal of the endotracheal tube.
Looking continually more optimistic for a wakeup sometime soon. Then we can begin to evaluate her responses to neurological tests that will reflect any deficits the stroke may have caused and start addressing those for rehabilitation. All prayers are much appreciated as we keep marching.
UPDATE - Jan 28, Monday
The Neurologist was by and seemed content to keep waiting on the wakeup to remove the endotracheal tube.
The Hospitalist was next, just now, and given her fluid retention, the increased ammonia (been juggling to find the right dose to manage the ammonia, same as we do), the condition of her liver, and the intracranial bleed that occurred, he said her prognosis is poor.
I'm still optimistic for a wakeup so we can evaluate her responses to neurological tests that will reflect any deficits that can be addressed for rehabilitation. All prayers appreciated as we keep marching.