Saturday, April 23, 2016

Happy Saturday

The intent to blog on a regular basis continues to be shelved due to life. Hence, I sit here, determined to make some time to type, and aware of the fact that there is no tidy pattern to the posts on this blog.  I like tidy.  There are friends who know this, so they tease when they visit and tip my frames on the wall slightly to the left or right.  It's embarrassing... and I have to align them again before I can relax.

This week put our family a bit out of alignment. Janneke (and I) came home from a 6 days' stay at McMaster Children's Hospital. After her surgery last Friday, we came home, believing her to be in fine form. Yet, by Saturday night, we knew things were not good, and Sunday morning found us at the ER.  We are thankful for the staff who carefully worked through the what ifs and possibilities to find out that she had contracted an infection in her bloodstream from the removal of her portacath.

The end of the story? We are home, continuing with a strong antibiotic, hoping to have our little bunny 100% by month's end. There are nasty side effects with antibiotics, but we would rather fight that at home in our familiar surroundings.



The middle of the story? There are some long days and short nights while living in the hospital. The lights are on 24 hours. Each day is almost its own entity, circling around the events and nurses of the 12 hour shift. There is a lot of waiting, waiting, waiting... for results, for consults, for meds, for time to heal.  That time can feel lonely one minute- and therapeutic the next, as I work through the emotions from the intensity and angst of when we first came in to the ER to the welcomed rhythm of the monitors and children's music playing in our hospital room.



The heroes of the story? Though we welcomed a new face of care every 12 hours, we were in good hands. I typically have some trepidation just before the start of the 12 hour shift, wondering if the new nurse is going to respect my role as Janneke's primary caregiver and wondering if we are going to be able to work together as a team for my kid. I know this doesn't always come true... but this week, it worked.

The pediatrician assigned to our case has known us for 10 years, and while we worked with her, we were also able to consult with our primary pediatrician.  This was a relief.  It is frustrating to meet a new physician who asks the questions you've already answered a million times - and you wonder if they've never opened the already-existing files in the hospital computer.

My sisters and other friends and family were ready to help provide meals, clean underwear, and support at home. These heroes make the stress of being away just a bit easier - particularly as the cost of parking, eating, traveling and cell phone usage are the hidden villains in the story.

The surprise of the story? Janneke's cognitive development.  As the week progressed, I saw a change in Janneke I hadn't witnessed before. She began to tremble with the touch of hospital staff as they did vitals and other tests. She became more restless and agitated with each day. Though I worried she was getting sicker, I also wondered if she was, instead, becoming aware of her surroundings.  In the past, she has not physically responded in a negative way to hospital stays and clinic appointments.  I think that has officially changed. When we laid Janneke in her bed last night, she flinched when our home care nurse started to examine her. Yet, as the night wore on, she began to tremble less. And this morning... she was laughing and kicking her bed walls like old times.  



It's the morning after the arrival home. It was wonderful to sleep on a real bed last night instead of the hospital chair-that-pretends-to-extend-to-a-bed-but-is-sort-of-like-sleeping-in-the-car-except-that-I-don't-have-an-elastic-kid-body-anymore parent bed. It is good to have a coffee this Saturday morning with Ralph. I look forward to catching up with Em, Soph, and Rachel. Though I realize this sorted and normal morning could tip to the left or right at any point, I am going to enjoy this moment for what it is.

peace,
spot