Up and Down and Rolling Around

Baba has been zonked out all day again. They decided to officially take the anti-anxiety meds out since he just gets so sleepy on them. They also did another round of EEGs this morning just to make sure there is no seizure activity because he hasn't been responding to any of his neurological exams the last 2 days.
He didn't get to sit up today but we thought that they were going to put in the pec tube and PIC line. We also thought that after that procedure, we'd be moved from the ICU to Immediate Care- which would be a huge milestone.
We went down to IR on the 3rd flooe and found out that we can't have the PEC tube done because his tongue is way too swollen for safe sedation and he'd need to go under general. We don't know if that'll happen tomorrow or Thursday. At this point it's looking like Thursday. It's unclear why they couldn't assess that before moving down to the IR...the radiologist's response was "well we can do the PIC" even if the PIC was a super last minute addition and wasn't what prompted the move. They did get a PIC line in. When I came back up, they moved all the stuff we had in the intensive unit to a new room and it was a little exciting. It immediately prompted the rehabilitation paperwork to get started because "at any time the doctors can say he's stable enough to leave the hospital." Which is what comes with immediate care.
Alas, I was in the room for no more than 20 minutes when they moved us back to the ICU. Everything went fine with the PIC procedure but since he's not been responding to any of his neurological exams, they prefer to keep him in the ICU.
Feels like a step backwards even if nothing tangibly changed in the last 24 hours. No regressions in vitals and no improvements. The CT Scan came back fine. Hospitals are a game of telephone between doctors and nurses and a giant ditch of inefficiency.

Snowed Out

It was the rainiest storm in 7 years in Southern California yesterday. Aaron and Kailash had 'clean up song' going as they piled towels to some water seeping into the living room and garage. Meanwhile here, there is a snow warning for tonight. Baba has also been "snowed" all day. I came in this morning and they had him sitting up again, which is great for his circulation. However, he was zonked out, snowed out cold. Yesterday when we moved him, it was a tiring experience, and he pretty much went to sleep. It was good yesterday because he was restless most of the day until we moved him. Today, however, he hasn't opened his eyes once. Apparently they gave him the anti-anxiety meds again and that zonked him out. Him being totally out and non-responsive has prompted another round of EEGs for seizure surveillance.  He was also not able to do any of the swallow testing that was scheduled for today since he has been out. So, most likely we are going to go forward with the belly feed. In the short term, it's more comfortable than the nose feed and then eventually (think April) we can think about removing if he is able to eat on his own. Not sure if a poor nurse shift change between the night shift nurse and temp nurse (who was switched off to the regular daytime shift nurse) is to blame or if he's having seizures. 

Sitting and Snoozing

Over the weekend, Shayta and I switched off duties. When I came into the room, Baba had his eyes opened and gave me a squeeze and then went back to sleep. He'd been drowsy most of Saturday. The CPAP was traumatic for him and the anti-anxiety meds seemed to be the best way to control his BP. And it's also been 2 weeks in the same room, in the same bed. Notwithstanding his drowsiness, it can lead to patient delirium, which is common. All that said, the meds snowed him-pretty out of it.
So, on Sunday we decided to see if he'd be ok without the meds. His vitals were stable all day, which is great. He would open his eyes now and then and motion for water, and then fall back asleep. He was also able to motion for pain in his chest which prompted the nurses to help suction out the phlegm in his lungs.
The big leap we made yesterday is that we moved him from a bed to a sitting position. He would be constantly hitting his legs and motioning that he wanted me to massage it. Changing position seemed to really help. It is also a huge ordeal and it tired him out and he slept the whole time in the chair.
I think he understands his surrounds when he's 'with it.' During those times, I would ask if I was Shayta and he would nod no and I was ask if I was Sonali and he would nod yes. So I think he does nod yes and no with intentionality.
Everyday is a little at a time. Monday we will see if can pass a swallow test and get him off the feeding tube- not looking optimistic but we'll see. Generally the goal is to improve his respiratory status and get him to wake up for longer periods of time. During Sunday rounds they were pretty happy that he's improving little by little. He got a shave Saturday night and that made him look better...or maybe he is looking better day after day.

Day 11

Its been a quiet day at the hospital as Baba rests and recovers from the pneumonia, his vitals steady and consistent. Kishore Dada paid us a visit from Philadelphia and was acknowledged by Baba with a squeeze of the hand.  Though he is still very weak and mostly in a sedated state, I'm certain that Kishore Dada's visit rejuvenated his drive to keep pushing through this phase in his recovery. He certainly gave me the boost of energy and optimism I needed, reassuring me that Baba will make a speedy recovery.  Prantik is on his way back to Syracuse to spend the weekend with us and Sonali is due back tomorrow evening.

Day 10

Baba had his CT Scan at 4 a.m. this morning.  The doctors took a look at the scan, gave the green light to remove the catheter from his head and the neurosurgeons removed it at 9am.  He was quite agitated following the procedure and has been sedated while the doctors tweak his medications to get his heart rate and blood pressure back under control.  He continues to struggle with his breathing - a swollen tongue does not help the situation - but the CPAP machine helps.  It is very difficult to see him suffering like this - he nearly punctured my skin as he dug his nails into my hand while in discomfort.  I keep reassuring him that he's in good hands and will be ok, but he shrugged his shoulders with uncertainty.

Prior to the series of events of this morning, he gave me another glimmer of hope. He made a gesture asking for a pen (as if asking for the bill at a restaurant). When I put the pen in his hand initially, he was moving his wrists around, testing it out to discern whether or not he was capable of writing. I thought it was a false alarm, but when the doctor heard that he did this, she came into the room and put the pen back in his hand and asked him to write and tell us how he was feeling - and he did it! He wrote with perfect penmanship.  Though we couldn't really figure out what he needed (It looked like "more sofa"), its definitely a good sign.  Perhaps when he's a little more awake and less medicated, he will be writing with ease. 

Day 9

All has been calm and well at the hospital today. The nurse miraculously was able to get the CPAP mask on Baba without a fuss and he even said (through nods) that it is helping him breath better.  It has made a noticeable impact on his breathing patterns. He barely needed any sedation and slept all day with strong, steady vitals.
Meanwhile, I spent a bulk of the morning cleaning the B'ville house and hauling out as much as I can as it is unlikely that Baba will be able to return home in the distant future. I'm hoping to get it back to pristine condition in AirBnB-like fashion, in preparation for all of our family and friends that are eager to pay a visit in the following weeks once Baba is out of the ICU.

Day 8

Baba's years of smoking have caught up with him now. What has surfaced overnight is that Baba suffers from COPD or chronic bronchitis.  He struggles to breath easily, driving his heart rate up and had to be heavily sedated and hopped up on pain medication due to a very scary incident this morning. Intermittent blood tests revealed that Baba's blood is not being oxygenated as it should be, so when I got back to the hospital this morning the respiratory therapists and doctors decided that he needs to be put on a CPAP machine to help with his oxygen levels and to prevent CO2 retention. No one likes CPAPs.  Who wants to have a mask blowing pressurized air strapped to their face? Naturally, this caused Baba to become extremely alarmed and agitated, driving his heart rate sky high, blood pressure through the roof and airways constricted in a pulmonary episode. Though the neurosurgeons went ahead and clamped the catheter this morning, they had to temporarily unclamp it to release the pressure during this incident.  It is now re-clamped and is still on schedule to have it removed in 40 hours from now, contingent on the results of his CT Scans.
Baba has been sleeping all day and his vitals are generally stable once again, but the doctors want to get that CPAP machine back on him as he continues to struggle breathing.  Should his lungs continue to become filled with fluids (due to the infection) and his blood oxygen levels remain low, he may have to be re-intubated.  Swallow-tests and physiotherapy have all been put on hold until he is awake and able to breath easily.

Day 7

Baba had a restless night as the feeding tube going from his nose directly to his stomach has been a cause of irritation.  He keeps wanting to pull it out and nearly did three times, with quick reflexes like a fox. The intent was to remove it once the speech pathologist did his swallow test today, but he is so weak and tired that he could barely keep his eyes open during the test.  He did however graduate from drinking water from a sponge on a stick to small pieces of ice.  Hopefully the ice will help moisten his tongue and airways as they are very dry and swollen.

We had our routine visit from the Neurosurgeons and neurology team this morning and they, along with his nurses, are astonished at how quickly he has been recovering, as doctors initially gave him a 2% chance of survival.  The fact that he woke up is a small victory that is worth celebrating.  He is also asserting some independence - when I was feeding him his water on a sponge, he took the stick from my hand and preferred to feed himself.  This was the highlight of my day.
The blood from his head is draining well and he is slowly being weaned off of the catheter. They will clamp the catheter starting tomorrow for 48hrs and if deemed medically fit (his body naturally takes over by reabsorbing the remainder of the blood) they will remove the catheter from his head - the sooner the better to avoid infection.

Prantik returned back to Toronto today. I dropped him off at the train station and made my way to the house to let a handy-man in and discovered that the basement had been flooded - there was nearly half a foot of water down there.  I scrambled to find a plumber and luckily Mr. Decker (our wonderful neighbours) was able to let them in to fix the situation so that I could return back to the hospital to be with Baba.  Murphy's Law, I guess.  

Day 6 - Sunday Morning

Yesterday as I sit next to his bed reading articles on my cell phone, the nurse came in to brush Baba's teeth and suction his mouth. Baba started swatting the nurse away out of agitation. I quickly went over to hold his hand and he acknowledged me! We asked him to give us a thumbs up, hold up two fingers and wiggle his toes and he did!! The nurse called the doctors right away as he was getting very agitated with the ventilation tube and needed to be sedated to keep calm. During this time, they performed a number of cultures and blood tests to ensure that his infection hadn't spread and his blood was getting oxygenated. The respiratory therapist conducted some tests to understand how much oxygen Baba needed and determined that his lungs were strong enough to remove the tube. To air on the side of caution and give some more time for the infection to clear, they decided to wait until the morning to take the tube out.  
It is Sunday morning at 10am and Baba is fast asleep snoring :) They took the tube out an hour ago and he immediately tried to communicate with us, letting us know if he was feeling uncomfortable. He can't speak as his throat is most likely swollen, but he's mouthing words and pointing. His heart rate spiked from all of the excitement, so he's back on some sedation medicine to maintain his calm and help him get some rest. 
Next steps will be to eventually get him to eat food on his own by the end of the day or tomorrow. 

Day 5 Update

Baba developed a bout of pneumonia and struggled with a fever overnight. When the night shift brought him down for his daily CT scan (which requires them to reduce sedation), he opened his eyes and literally fought the doctors, flailing his right arm and leg - they said he was strong. They were able to get the CT scan they needed with some motion artefacts. This morning the doctors ordered antibiotics to treat the infection - but that is the least of our worries. Our greatest concern is the swelling in his brain following the trauma of the pressure from the haemorrhaging.  The catheter is maintaining pressure levels by allowing excess blood to drain from the brain, but his body needs be weened off of the catheter slowly as the swelling subsides.  This is to prevent him from loosing too much of his spinal fluids and allow his body to slowly regain control and self-heal. The tube that is assisting him with his breathing also needs to be removed to avoid the need for a tracheotomy. In order to allow for that to happen, he needs to be more conscious, which means weaning him off of the sedatives.  

The next few days are going to be a game of patience until the dust settles.  Prantik and I are tying to give Baba some space to keep stimulus levels low and allow him to rest.  We (semi) moved out of his room and started making ourselves at home in the family waiting area, while making frequent trips to his room to make sure he's alright.  We're also going home (to the house in B'ville) at night around 10pm and returning in the morning around 6am when the doctors start making their rounds.

Baba is still in critical condition, but we are praying that he gets through this phase in his recovery.  We are cautiously optimistic of a positive outcome, fully realizing that life will never be the same for him, and us. He will be left with motor deficits on his left side, which has been unresponsive to date.  We also won't learn how the stroke has effected him cognitively until the swelling goes down and he wakes up a little more.  

72 Hours Later

Yesterday Tumpa didi came to visit. Since Monday night, it has been both of us (Shayta and myself) together in a small ICU room rotating back and forth and keeping each other company. Mostly, our shared anxiousness doesn't help lighten the mood. I have to say that having Tumpa didi visit was such a welcome for us psychologically. It was a needed mental boost. While Tumpa didi was here, she was able to witness a couple of neurological exams and got a glance at the CT Scans and progress from the catheter.
Yesterday morning, Baba was less responsive than the previous day. He was not following commands and when he would, would do so weakly. Doctors attributed it to the seizure medication, which causes drowsiness. They also tried to increase the pressure slightly last night, which he didn't take to well, so he was also tired.
However, over the course of the day, as they reduced the propofol, Baba was beginning to wake up more and more for his exams. Around the afternoon, he opened his eyes (reflexively), he would extend his right arm upwards, almost as if he wanted to stretch. He was also feeling around his head and his eyes. Tumpa Didi and I would talk to him, and he would firmly grip my hand repeatedly-responding to us and telling us he can hear us. I think he can feel the probes and bandages or possibly pain in his head and trying to assess what happened. He is able to move his right leg and left leg (weaker than right but not inert). His right shoulder shrugs when asked to squeeze his left hand, but no movement in left hand.

As of now, neurosurgery says the drainage looks good but still a few more days before they can remove the catheter. Last night and now, he is breathing on his own for the most part (still has a respirator). With the hourly exams and needed rest, he does get agitated (pressure increases), but aside from that has remained in stable condition. No seizures since Tuesday night.  Due to the increased pressure when the propofol is reduced, they are going to ease it up today to ensure his pressure is under control.

Occupations Therapy started today- just simple rotating of limbs. Physical Therapy started tonight.

Goal: Taking him off of propofol this morning and get him to wake up and get him off the breathing tube. Hopefully we see progress towards that in the next 24 hours. Eventually, transfer to Immediate Care from Intensive Care. Weeks away but moving towards it.

Shayta went back to Toronto yesterday and coming back today. I am heading back to LA today. Shayta will be here for the next week and then I'll be back.

36 Hours After Stroke

It's Wednesday morning Jan 11 2017. As of the last neurological exam about 20 minutes ago, Baba is able to respond to commands on the right side of his body. His left leg responds very weakly to reflexes and left arm not so much. Still very very early at this point. When sedation was eased/he's stimulated, he slightly opened his eyes (reflexively) and also tried to put his hand under his head as a sign of comfort/preference. These are all positive signs. There will be an EEG today to rule out seizures which is standard protocol. There are positive signs but the objective right now is to ensure his vitals remain stable as the blood continues to drain as he is foremost in a critical state. To summarize, Baba had a stroke Monday night. CT Scan showed massive bleeding into the brain cavities. A catheter was placed into his skull to drain the hemmorage Monday night. tPA was administered yesterday to relieve blood clotting which was hindering progress, and that seems to be working.

As of now, it's an issue of 2-3 months that we're trying to manage towards. He might become conscious in the next several weeks, but think of that as an optimistic objective. It really is a day to day assessment where we will slowly manage the level of independence of various supporting machines. 

Shayta and I have been here since Monday night. He hasn't been alone. However, given the marathon nature of Baba's plan, we feel best, after consulting with the neurologist, to optimize now in terms of weeks in order to provide the best care for Baba without burning out. Anytime conditions can change.