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.