Caregiving, Disability

December 1, 2020

When Being Strong Is the Only Choice

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My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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“You never know how strong you are, 
until being strong is the only choice.” 
-- Bob Marley

I saw this somewhere on social media shortly after my daughter suffered a hemorrhagic stroke in January of 2017. Before this event, these words would never have struck me on such a personal level. I’m not saying I would have just scrolled on by, but I would have maybe thought of my mother who was really suffering at the time due to treatment for stage 4 breast cancer, or maybe I would have thought of my friends who are parents to children with special needs who I know call on their reserves of strength on a daily basis. But no, I would not have seen myself in those words.  

It was scary to read the quotation and know that Bob was now speaking to me. It was scary because I did not feel strong, but I did know I had no other choice.

Last week I shared a passage from a journal I kept while my daughter was first in the hospital and it detailed what happened the night that she suffered a brain bleed. This week I’m going back to that journal to share what day-to-day life was like while living in the pediatric ICU. The first two weeks were especially difficult because everything was new. It took an unfathomable amount of strength for my husband and me to endure those very long, tiring days trying to understand complicated medical jargon, being asked the same questions by different people several times a day, and all while watching our daughter just clinging to life.

After the recounting of the night of the bleed, the next entry I have in that same journal is from January 10, 2:45 a.m.

-nurses came in to turn K onto her left side and she had a big cough

-HR (heart rate) dropped dramatically -bradycardia

-RT (respiratory therapist) called to respirate manually

-suddenly a zillion people came in and started to prep her to go down for a CT

-I’m asking questions, but no one is listening to me

-then vitals are stabilised, plan B, flush her drain line

At the time she had an EVD or extra-ventricular drain in her brain to remove extra cerebral spinal fluid (CSF) because otherwise the pressure inside her brain could have caused more damage.

-Dr. Singh arrives and flushes the line; vitals still good

I found out later that this neurosurgeon was on-call and she came into the hospital in the middle of the night from her home. 

-decision is to do the CT in the morning to check the size of the ventricles and see if there is a clot

-may remove drain early instead of on Friday

I remember writing all of this immediately after it happened because I could not sleep another wink. I did not know it at the time, but what I had experienced was what they call in the hospital, “coding”. Later I would see this and hear this happen many, many times, but fortunately it was the only time I experienced it for Katie. I remember asking one of the RT’s while there was everyone and their uncle in the room, “What do I do? Do I call my husband? It’s 2:00 in the morning.” She just stared at me for a second and then went back to listening to the people surrounding Katie. I know now, that this is what must happen, because in those moments, the welfare of the patient is the only thing that matters, but it was so frightening to have no idea what was going on. 

January 10, 11:45 a.m.

-CT looks the same as post-op; clot in the 4thventricle is clearing

-surgeon is encouraged by K’s pupils, that she extends all four limbs in response to pain and that she sometimes has a strong cough

-he reinforces that progress will be very slow

-we are visited by Steph, a child life specialist

-EEG in the room will happen tomorrow morning

January 11

-Katie looks much better today, less puffy

-has a fever

-had a restful uneventful night according to nurse Jen

-Rich and I slept at home; I feel like a different person

-met with OT (occupational therapist) Carolyn

-going to start exercises: hands—straighten and close; palms up/palms down; wrist flexion; elbow—flex and straighten

-do these every 4-5 hours

Later there’s a little note in my mum’s writing. She was a retired nurse.

18:30 – all bathed; fluids done, blood done

January 12, 7:30 a.m.

-first night with breathing tube on CPAP setting; she had trouble at first

-big vomit and a poop but then doing perfect on that setting since 6 a.m.

-still has a persistent low fever; cause unclear so giving 2x dose of antibiotic for an unknown duration

-breathing tube could be out this morning!

-no MRI or CT tomorrow; will likely be extubated (breathing tube removed) for that

-add gentle leg extensions to OT exercises; bend leg and bring knee towards chest

January 13, noonish

-the neurologist was here; to talk about K’s failed attempt at being extubated

-concerned about her neurological readiness

-yesterday during examination K was clenching which reduced air going in so her Olevels went down

-she has strider; shoulders going up with each breath; very laboured

-has inefficient cough to clear secretions, concern of a lung collapse

-when she tries to cough she has bradycardia and dystonia where hands raise, elbows bent towards chest and fists clenched

-we are wondering if she should stay with the breathing tube in for 2-3 more weeks

-would this be enough time for the above issues to be resolved? 

Then there is a random little note below that entry that just says:

-speaking? eating? coughing?                 

At the time Katie was unresponsive to any stimulus except pain. She could not open her eyes, she was being fed by a tube in her nose and had not spoken a word in over 5 days. 

This day is when the doctors started talking about the possibility of a tracheostomy – an opening in her trachea to allow a tube to be inserted that could be connected to a ventilator, but it would also make the work of breathing easier on her. Rich and I were devastated. We hadn’t considered that this might be necessary. Why would we have? I remember when the respiratory therapists took us into a small meeting room and showed us with some kind of demonstration doll what the hole would look like and the device that would go in it. Horrifying, all of it.

We did not feel strong. 

January 13, 7:03 p.m.

Eyes open! Me, Rich, Aunt Julie and Maddie are in the room to see it! 

-CT scan great; EVD is out ????

-big physio session; Sarah, Heather and Carolyn get her up and sitting at the edge of the bed

-first time sitting in 6 days; Katie even moves her hands and legs a little on command!

-I got to hug her !!!

-no dry eyes in the room 

January 14

-very rough day

-running a high fever 37-39.5 degrees all day; sweating

-clenching arms and jaw

-there is a tongue depressor wrapped in gauze in K’s mouth to prevent her from biting her tongue

January 15, 12:30 p.m.

-K has been extubated for another trial to see how she does without the breathing tube

-did well at first; gave her epinephrine to relax the airway

-now back to clenching her jaw and grinding her teeth

-a 24 hour test with success usually indicates patient is good to go

-she has needed 40% Owith a mask

-how do we make sure she can clear her lungs?

-more episodes of clenching and holding her breath; bradycardia

-this doesn’t fit the theory that the bradycardia was a vasovagal nerve response caused by the breathing tube

January 16, 1:28 a.m.  It is Katie’s 10th birthday

-doctor and nurse discuss episodes (approx. 6 times since beginning of her shift) 

-decision made to give K ½ dose of hydromorphone to make her comfortable

Morning Huddle, 8:30 a.m.

This is when the PICU doctors, fellows, residents, medical students, therapists, social workers and nurses make the rounds of each of the rooms. Parents can participate or not. By this point I’d grown pretty good at deciphering the medical talk and would take notes on my phone.

-discontinue propranolol and hydromorphone to see where K is now; not mask anything

-concern about episodes of bradycardia; will continue to monitor

-Dr. Nick came in

This was a resident from Neurosurgery. Rich could never remember his actual name, but he looked like Dr. Nick from the Simpsons.

pleased with her progress with regards to EVD coming out and showing no signs of increased pressure in the brain; MRI scheduled for next week

-a rehabilitation doctor will now be assigned to K’s case

So, Katie’s 10th birthday was pretty much a nightmare of a day. She continued to struggle without the breathing tube and over the course of the day her need for more oxygen via the mask increased and her distress also increased.

The following day, it was decided that her airway was not functioning properly, probably because of the swelling on her brain stem. In short, she could not effectively control the opening and closing of her vocal cords and was experiencing laryngeal spasms. This was causing her to experience a worsening of what they call neurostorming or dysautonomia where essentially the patient’s brain can’t regulate all of the basic functions of life—muscle movement, breathing, heartrate, blood pressure and temperature.

It was decided that a tracheostomy would be the best course of action to alleviate the stress on her airway, remove the breathing tube, as it is a potential source of infection, and allow easier physiotherapy sessions. At the same time, the doctors said we might as well get her fitted with a feeding tube into her stomach as well.

After 11 days in the PICU, Rich and I felt like it had been a lifetime. The gravity of what our daughter was going through had set in and our ability to be strong in the face of all this trauma was questionable at best. For strength, we drew on the abundant support from friends and family and our faith that she was in the best hands. 

Allie G.

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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