I have a co worker whom is quite the amazing man, father and husband. A tragic event happened in his life in May of this year. What is to follow on daily basis is the very detailed journal he has kept of his ongoing journey that has both brought me to tears, inspired me and literally taught me how to look at life in awe.
I hope you will follow this journey with me as each day I come into work and the first thing I do is to look for his entry on what new things and miracle’s have transpired since the day before.
This is a journey of never give up, inspiration, strength and overall faith and love at it’s genuine core.
Each of these posts are in his own words and I’ve not edited
Before Caring Bridge (4/16/17 to 5/2/17)
Journal entry by Jacob — 8 hours ago
The first journal entry I made on this site was on 5/3/17. Prior to Mason and Karyn setting the site up, I was updating people via text messages. Often these were responses to one off questions as opposed to full updates.
A lot happened prior to 5/3/17, and I thought it would be cool to compile some texts from 4/16/17 to 5/2/17 to fill in that timeline gap for Lisa. I threw in one extra from 5/8/17 that I thought she would like.
Just got back from ER and Lisa is still there (they admitted her). I’m going to have Mom and Fred bring Everly to the Easter party and will head back to the hospital. Lisa had a headache the last few days and had extremely high blood pressure. Doctors thought she might have a stroke. They are having a hard time getting her blood pressure down and admitted her.
She’s at the hospital still. Stable, but blood pressure still high. Saw some calcium deposit in her brain in the CT scan so they’re going to do an MRI.
Transported to Seattle last night because of their expertise. Rough night with nausea and pain. Doing scan now to make sure everything is still alright.
[Side note: We had gone to the emergency room in Issaquah at 1AM on 4/16. We were transferred to Seattle at 9PM.
Following the scan in Seattle, doctors rushed Lisa to have an emergency thrombectomy since she had actually been having a stroke. The cerabellum damage was causing the nausea]
She’s doing well. They are just watching close to see if they need to do surgery to relieve pressure from swelling. That’s in line with what they expected.
[Side note: They took the breathing tube out this day and, as of 6/27, it was the last time she had normal food. She had cranberry juice with a thickener in it. She loved it!]
Last night Lisa had experienced some swelling in her brain (which the doctors had warned may happen) and so they performed emergency surgery to relieve the pressure. She made it through successfully and they kept her sleeping all night to heal. Today they will wake her up. I’ll keep you posted, she did really well all night.
Lisa woke up, but they had to put her back to sleep for a bit to make her comfortable while they set her up for this treatment. I believe they will start letting her wake up again now.
It is too soon to restart blood thinners but we have to. She’s getting more clots. They have her sleeping now and comfortable and are giving her the blood thinners. Now we just pray that she doesn’t bleed where they operated on her brain yesterday.
She can’t breathe without help. Mostly it’s that she doesn’t have a gag reflex right now. Based on that and how critical she is right now I’m guessing we’ll be here awhile.
Lisa made it through the day successfully. Was pretty sketchy in parts. Particularly in one situation where the doctors disagreed and had me chose the treatment plan. Luckily, the one i chose worked out. Hoping to get a few hours of sleep tonight.
Lost some left arm function over night. MRI this morning. Results were great in that the stroke isn’t on the part of the brain we were worried about. Unfortunately her swelling is trapping some fluids, so they will probably have to do a surgery to put a drain in. Surgery isn’t risky, but they would have to take her off blood thinners to do it (which is risky).
Blinks to communicate. She got sleepy just now so they are rushing her in for another surgery. Drain in head.
She flat lined prior to surgery and they revived her. They did the surgery right in the room. Hard to tell how she’ll come through. In CT scan now to find out what happened. Hoping that it’s not a new clot or stroke in the brain stem area.
Scan is back and her brain has swelled too much. The only option is surgery to cut more bone out to open up more space. Very dangerous and unfortunately our only option. She was unresponsive prior to surgery, including her pupils. They shot her with a hypertonic solution (high sodium to quickly decrease swelling) and sent her down to surgery.
Out of surgery and into CT. We may not know until tomorrow. They have to get her out of sedation. May not do that until tomorrow. Once they do, she will either respond or not. Still a chance. It’s a small one, but there is one. She should be back up here to the room any minute.
She is a rock star. Made it out of surgery and is awake. Can blink answers. Unbelievable. The doctors are even saying shes amazing. Pray for increased mobility, decreased swelling, no clotting. I’ll report back tomorrow.
Seriously, the doctor was shocked. Obviously things are still very serious, but I feel like the luckiest guy in the world right now.
The surgeon came in and was floored. He said it’s a miracle. Still a risky day ahead though.
Doing blood thinners today and hoping that yesterday’s surgery doesn’t bleed. She’s getting pretty angry at the breathing tube which is pretty tough cause I can’t do anything to make her feel better about it.
She’s doing well. They haven’t started the blood thinners yet. Doing so shortly.
No major events today. First day since Sunday at 1AM! We’re going to try to get some sleep tonight. I think I’ve probably gotten about 12 hours since Saturday.
Hoping we can make some progress on the breathing tube tomorrow. It is the most uncomfortable thing for her.
Night went pretty well. Fought off a little fever, but otherwise just got some rest. They have her partially sedated to help her relax. Goal for today is to make progress on removing the breathing tube. She hates that thing (who wouldn’t).
Today they need to see if she can swallow. Also hoping she starts moving her hands and feet, but we just won’t know yet.
Major progress! A full day with no major setbacks. We got a little sleep too. Probably 5 or 6 hours, off and on.
Day went well. She did well on the breathing test, but it’s 50/50 whether she’ll be able to swallow right now. They are letting her rest up and will try to pull the breathing tube tomorrow morning. Pray she can swallow. If not, they will put a little thing in her throat instead which would still be way more comfortable. That would have to happen Monday.
One time on Tuesday or Wednesday when we thought she was stable I quickly went home and showered and packed some clothes.
Days all kind of blend together
Unfortunately Lisa couldn’t breathe on her own once the tube was removed and they had to put it back. They sedated her to keep her calm and relaxed. They will do a trach tomorrow in order to remove the tube so that she’ll be more comfortable.
She actually can breathe on her own when the tube is in. The tube goes through her vocal cords. Once the tube is removed, she can’t control her vocal cords and they clamp up. Can’t know if it’s permanent or not yet.
Big news for the day is that the doctor got Lisa to move her left thumb on command! Was a big deal since she hadn’t moved any extremetries since about 3 days ago. That’s a good sign. Other than that she rested all day. Excited to get that tube out tomorrow since I think it will significantly increase her comfort.
Big day today! Breathing tube out at around noon. Everly is doing great. Had a sleepover at a friend’s house yesterday. Going to be at our house and going to school all week. Have family members and friends trading off days. All Lisa approved of course.
Getting a blood transfusion now. Nothing concerning for the doctors, just will give her additional energy and help prepare her for the minor surgery (to remove the breathing tube and place the trach).
Hasn’t moved her thumb again, but she’s been sedated and tired. I wouldn’t expect it again until after surgery today when she collects her energy and comfort. Side note, I have used the public restroom for teeth brushing, changing, etc. It’s gross, so I’ve been snagging these super strong cleaning wipes from the room. The nurse today was like….ummm you’re supposed to wear gloves with those. They’re super bad for you I guess. Haha..no idea!
If she is super stable I may head home for a short time Wednesday to shower and switch out clothes. Also to hang with Everly.
Surgery went well. She’s still completely knocked out to rest. Looks great (as always though).
Lisa woke up a bit. She can smile, but is super sore. Still moving her fingers too.
Surgery tomorrow to get feeding tube in her stomach. Then they can remove the one going through her nose.
She’s doing ok today. Moves left toes and fingers a bit. Reflex in right leg. Been fighting a fever so not much rest last night. Surgery today to get the feeding tube in her stomach. Pray for no blood clots which is always the biggest risk now with these surgeries.
Sorry, late on my update for the day. She had a successful surgery and is now resting. She has no tubes on her face anymore and looks way more comfortable. She was able to move fingers and toes on her left side. She had some reflex in her right leg. All big steps!
I went home today really quick while she was in surgery. Gave Everly a bath and cut her nails. Then played a game of yahtzee with her. Switched my clothes out, grabbed bills, showered.
She’s doing well, but is very very tired. Routine CT scan at 4AM so it’ll be an early morning.
CT scan showed a bit of bleeding, but not enough to be majorly concerning. They do need to stop blood thinners for another day because of it. So we’re back to lots of prayers for not clotting. Other than that lots of resting.
They did what is basically an ultrasound of her brain to check for embuli (indicative of clotting and found some). After that they gave her a medicine that sort of acts like a blood thinner, but isn’t one. They checked later and no embuli. Now we just wait until tomorrow and keep hoping for no clots. They will do a CT scan in the morning and if the bleeding looks fine they will do thinners again.
They want to do an MRI tomorrow or Friday. The doctors are confused about her lack of movement given where the stroke was.
I’m alright. I wish we could stop having these setbacks. Her pressure readings have been high so they are taking her for another CT scan to make sure it’s not the bleeding.
CT scan was good.
Well CT scans show that the bleeding has stabilized in her brain. All else equal they would start blood thinners again. However, they are concerned that she has some sort of gastrointestinal bleeding. They want to be sure they know the source before starting on the thinners. So today we’re just praying for no clotting again. Also nothing in the GI work that would prevent them from blood thinners.
Lisa got lots of rest today. They have had her off of blood thinners all day and will continue that into the morning. They want to give the brain bleeding and any potential GI bleeding time to heal. While they do that, they monitor her arteries for signs of clotting. Doctors tried to take her off the ventilator and she almost did it. They think tomorrow or the next day she’ll be able to. For now it’s putting a bit too much stress on her body. She was also dealing with high pressure in her head today which, combined with pain killers made her sleepy. Big victories for the day were not clotting without blood thinners and doing well off of the ventilator.
Communication through blinking and she’s starting to be able to squeeze my hand with her left. Hard to communicate today though because she was so tired and on pain meds. Once she’s stable (tomorrow or the next day) the doctors want an MRI. They’ll look at it to help give us some idea of prognosis and next steps.
Lisa is doing well today. She did great off of the blood thinners, but the doctors obviously want to start them again as soon as possible. They did a CT scan to verify that there isn’t any new bleeding in her brain and we’re awaiting results. If they come back fine, they’ll start blood thinners again. Two more big things for the day: 1) more attempts to ween her off of the ventilator and 2) more attempts to ween her off of the EVD (the brain fluid drain that is currently in/on the top of her head). If she remains stable, we may get an MRI tomorrow so the doctors can give us a better idea of prognosis and next steps.
Lisa had a good day today and is super tired out. She breathed mostly on her own nearly the whole day. They turned the ventilator back on to give her a rest over night. They’ll exercise her breathing again tomorrow for the entire day. They will do that for a couple days before trying to take her all the way off again. They will do an MRI tonight, so we should get information tomorrow on prognosis. I would anticipate it still having lots of unknowns, but it will be better than nothing. No movement on the EVD (head drain) today.
Bit of a scary morning, but Lisa is resting and doing alright now. At about 6, she got some goop in her lungs and her oxygen levels went down. They were able to take care of it and she’s now basically getting a lung massage periodically. At about 8 she had a seizure. They took her for a CT scan and everything looks ok. It’s not uncommon to have this happen for patients in this area. She seems to be fine now and they are giving her some medicine to deal with it. She has a sinus infection, which they are also dealing with. Going to probably be a big resting day. Doctors looked at the MRI and will go over the results with me this afternoon.
Lisa had two more seizures today and is now resting. She recieved some associated medicine and they looked at a CT scan to make sure there was no new bleeding (there was none). Tomorrow morning they will conduct an EEG, which is a test to make sure she’s not having a continuous seizure they don’t know about. Seizures are common in this area of the hospital and generally cause no long term damage. She still did a breathing test today and did well again.
I am basically just watching her 24/7, so I’ve caught a few of these things right away and go get them. I honestly don’t even know if they would’ve seen the seizure this morning. Glad I was there.
They are awesome here, but the seizure maybe only lasted a minute or so. Only her eyes moved. So it would be easy not to see. The other thing I caught was right before emergency surgery, I put the legs on my chair down and she didn’t pop her eyes open. I knew something was wrong and got the doctor.
I was able to head home yesterday and picked Everly up from school and spent some time with her. I’m struggling with how to balance that. She needs me too. I know she’s safe with my mom though.
These seizures are a minor setback, because she’s so tired afterwards and won’t respond to testing. They are going to do that test all day to see if they can catch one on the monitor. I didn’t really sleep last night cause I was watching for them. Caught the one this morning, taped it and timed it for the doctors.
Big things for today: 1) Another successful day of breathing tests and 2) EEG testing confirmed that she is having seizures and the doctors have given her medicine to treat them. She is officially whooped and is sleeping soundly now. They’ll continue to do the EEG overnight to catch any seizures in case the newest medicine doesn’t work. I would guess after that we’re back to the plan of working towards removing the ventilator and removing the EVD (google this for a full description). Ultimately, those are important milestones for getting out of critical care.
I’m still processing the MRI stuff. It went ok. I need some details from a lady that wasn’t in yesterday. Lisa will definitely go into some sort of rehab facility after here (eventually will come home). I need to have an idea of where and how our insurance works, which is what the lady can help me with. I have some ideas for Everly but it’ll depend on details for Lisa.
Today Lisa mostly rested. She dealt with seizures as the doctors work on finding the best medication to handle them. The seizures and associated medicine really tire her out. They did another CT just to rule out any new bleeding and the CT came back fine.
Today was a long and tough one. About 4AM until now. After evaluating the seizure type activity for about 48 hours via camera and EEG (can google) the doctors don’t all think that Lisa is having seizures. A neurologist who specializes in eyes actually came down to evaluate too. If it’s not a seizure then it’s something to do with the brain stem sending rogue signals that are producing the eye tremors we’ve been seeing. They are working to figure out what’s going on, but don’t know. They did an MRI which didn’t show any unexpected changes. They ran about 10 other tests looking for various things (e.g. infections) and we should get those back tomorrow. They’re backing off seizure medicines for now and may hook her back up to an EEG tomorrow to get results without medicine. They also are doing a CT scan and then should get the aforementioned labs back.
She’s very strong and is a fighter. As new doctors come to see her we kind of keep having to prove she is still able to understand everything. Today I got her to raise her eyebrows on command. It fires us both up. I told her when the latest one left, “skrew anybody who doesn’t think you are 100% with it right now. We’ll prove them wrong.” She raised her eyebrows at that 🙂
[Side note > One doctor asked me if I had looked into any facilities that specialized in locked in syndrome She asked that while standing right next to Lisa. I told her it was very premature to be going there and I think she could tell she irritated me.]