THE GHOST IN YOU (Psychedelic Furs)
December 17, 2019

I’m sitting in an armchair with Cole sleeping next to me in 27 lbs of traction, nursing a cold.  The last thing we need is a cold or illness of any sort but weeks in hospital in December are hardly the best circumstances to prevent illness!  Nurses and other kids all have the same little cough that he has.  Who knows where it came from – there are so many people coming in and out of the wing…So we’re doing all we can to keep it from getting worse. The surgery is scheduled for December 24th, which gives a week.

The traction process seems to be going well.  Cole’s spine is responding favorably to the slow stretching and from the last x-rays his ribcage is shifting back into place.  He sits so much straighter which gives us an idea of how he will sit following the surgery.  It’s really positive and he says he’s more comfortable even in the traction – and how can he not be?  His pelvis is straighter so he sits better and it’s also no longer touching his rib cage.  With his rib cage straighter, his lungs are no longer impacted so his breathing is better and simply sitting straighter really has an impact on his overall image – he looks more mature and present.

We’re now two full weeks into this incredibly weird existence.  I feel like a ghost in my life.  I spend about 75% of my time at the hospital, returning home every other night to cuddle our lonely, confused dog, do a load of laundry, sleep, shower and return to the hospital the next morning.  I can tell my husband has been there but we’ve not been in the house together for two weeks.  We spend time at the hospital together but with Cole and visitors and nurses, aides, doctors…endless comings and goings at all hours.

It’s hard to know what to do with myself when I’m home.  I’ve wrapped all of our gifts, though I’m not sure why.  We do have stuff we’ll pass along to my family for their celebrations and we shipped to family out of state but what of our celebration?  How do you celebrate when you know you’ll be spending Christmas Eve waiting with worry while your son undergoes a ten hour surgery with a couple of hours of pre and post op on either side of that ten hours?  How do you celebrate Christmas when your son will be in the PICU on Christmas and likely Boxing Day? We’ve considered doing something before with Cole but we can only have two visitors so we can’t even do something with the just my brother and his family and my mom, who is coming down from Oregon.  The reality is it doesn’t matter much to my husband and I, but it does matter to Cole, whose favorite holiday is Christmas.

None of this matters except getting him back to full health before surgery and then getting him through the surgery and the next month of recovery.  We’ll have to create a new holiday after all this is but a memory so that he can celebrate his recovery, bravery, and grace that he’s shown throughout these weeks.

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Posted in cerebral palsy, Christmas, Family Life, Gratitude, Life, Special needs parenting, Stress, Surgery | Tagged: , , , , , | Leave a Comment »

HANGING AROUND (The Stranglers)
December 7, 2019

Our lives took a very unexpected turn on Wednesday.  After months of prep for Cole’s spinal fusion surgery, we checked in on the surgery day, readied ourselves for a long day of waiting and surgery only to learn that when Cole was put into traction pre-surgery (but already under effects of anesthesia), his nerve function diminished so the surgery was put on hold.

Instead he was outfitted with a halo, a barbaric looking traction crown that is basically screwed into his skull, that has a handle of sorts at the peak from which weights on a pulley are looped through to slowly stretch out his spine over the next weeks in preparation for eventual spinal fusion surgery on the 24th.  Over the course of 20 days, the weight will go from five pounds to almost forty.  During this process Cole will remain at CHLA and will be monitored and x-rayed to ensure that the traction is working and that his spinal cord is handling the stretch well.

Fortunately, there is a wheelchair that’s been modified with the same traction set up so Cole can move around the hospital a bit during our stay, though after three days in a single room are already taking their toll.  We’re all adjusting to our new “home” and my husband and I are trying to work out reasonable schedules so that one of us is always with Cole (one parent is allowed to sleep there so we’ve been switching off nights) and one of us is working to maintain life – i.e. taking care of our dog, house, groceries, etc.).  We’re both able to work remotely, though given the longevity of our stay, we’ll each likely  go into our respective offices next week since there’s no real need for two of us to be in hospital all day, every day.  The trick is going to be finding some balance of normalcy in this weird existence.

Following the surgery on the 24th, we’ll have another week of post-surgery recovery so we’re likely there into the New Year.  Definitely not the holiday season we anticipated.  We’ll just be hanging around CHLA, making the best of a challenging situation.

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A LONG DECEMBER (Counting Crows)
November 29, 2019

Very simply – December is going to kind of suck.

Cole is having spinal fusion surgery on December 4th.  The surgery itself is arduous – about ten hours under and a full week of hospital recovery.  He’ll have his spinal cord straighten and supported by two titanium rods from pelvis to the top of his spine when all is said and done.  It’s not an uncommon surgery for people with cerebral palsy, who are largely wheelchair bound.  Over the course of his eighteen years, Cole’s spine has very slowly curved more and more, until the past year and half where it exponentially grew more severe seemingly with the onset of puberty.  The right side of his pelvis is nearly touching his right side rib cage.

As much as I loathe the idea of putting him through another long surgery and painful recovery, the implications of the scoliosis worsening are far more concerning.  It can have a significant impact on his overall health, including breathing (his seems to be a little compromised already) and heart issues.  Plus he’s likely been living with a fair amount of discomfort for a while.

I know other families who have been through the surgery and ultimately, no one has yet to regret doing it and the benefits have been truly impactful in terms of improved quality of life for their children.  So it’s an incredibly difficult no brainer.  From our previous experiences with major surgeries, I know that once Cole has mostly recovered and resumes his regular routine that the much of the hellish procedure and recovery will quickly become a distant memory.  Cole’s very resilient in this respect, which makes us the same.

Several years ago when Cole spent a summer recovering from a huge hip surgery that left him bedridden for two months, I put out a challenge of sorts on Facebook to all of my FB Friends whereby if someone sent Cole a card, note, joke, movie recommendation, really any sort of mail, he would write back – and he did write back to about 150 people all over the world.  It was amazing and it was the best diversion during recovery and extended our support network exponentially.

Christmas is Cole’s favorite holiday.  Our traditional Christmas Eve event at my brother’s house is literally his favorite day of the year and his most favorite evening.  He also loves holiday music to such a degree that I’ve had to limit the listening window to start at Thanksgiving and run up to New Year’s Eve.  He loves sending holiday cards.  So my thought for his recovery this time is to challenge everyone to send Cole a holiday card and he’ll send one back.  It will make him so happy and hopefully help ease the post-surgical pain, discomfort and boredom.

Please write!  We promise to write back…

PM me if you want to send a card.

Posted in cerebral palsy, Correspondence, Family Life, Gratitude, healing, Life, Special needs parenting, Surgery | Tagged: , , , , , , | 1 Comment »

LIONS & TIGERS (Sleater Kinney)
November 4, 2019

Lions and Tigers and Bears, Oh My!  I haven’t written anything for ages. I don’t really know why because it’s truly therapeutic for me and I could really use the release of fret and fear that I have been carrying around for most of this year. Lions, tigers and bears seem minor in terms of the hurdles and challenges we’ve faced and are facing in 2019.  I plan to make time to write more so will use this first post as a bit of a matter of fact catch up.

Cole turned 18 in September so we spent several months getting things in order to set up a conservatorship so that we can manage his medical, financial and educational needs moving forward once he’s legally an adult.  All of the stress led up to a fairly innocuous court hearing whereby we granted the conservatorship rights.  It doesn’t feel great to know that we’ve essentially taken away most his legal rights, however he’s not capable of making a lot of major decisions on his own so it’s the best option.  We’ve always and will always consult with him and no one has his best interest ahead of all else than we do.  Though we received the official documents, there remains a lot of loops to close and loose ends to finalize, like closing the guardianship that was in place for most of his life.  It feels never-ending.

While all of the conservatorship stuff is going on, we also learned that Cole’s scoliosis has worsened to the point that he is having surgery in December to try to correct it as much as possible. His spine has curved to such a degree that the right side of his pelvis is nearly touching his lower right rib cage.  The distortion has caused his organs to squish together which can ultimately cause a lot of problems, including breathing and heart issues. It’s a fairly major surgery, with his back being cut open from top to bottom so that the surgeon can straighten his spinal cord and insert titanium rods to support the new position on either side.  It’s not without risks due to it being a lengthy surgery (about 10 hours), potential nerve damage, infection due to the size of the incision, but the outcome promises a lot of benefits and improved quality of life for him.  He’ll even end up appearing taller once his spine is straight, a benefit he favors most. I plan to document all of this as much as I can as I’ve not found a lot of parent information about the whole process and particularly the recovery and healing.

In the midst of these big events, we are also trying to prepare for Cole’s transition from high school to the next phase of his education and life skills training.  There are a handful of career transitional campuses (CTC’s) in our area that offer various programs for young adults with special needs where, dependent upon their abilities, they are exposed to different career tracks, in addition to life skills (basic computer skills, creating resumes, managing living spaces, finances, and the like), and continued education.  Cole’s next IEP, scheduled right when he’s due to return following the six weeks of recovery from the surgery, will start creating the foundation of the transitional IEP that will follow so we have felt pressure to make sure we are prepared in terms of knowing what we want for him moving forward.  Part of this has meant touring each CTC to get an understanding of what each offers.  There are two that are impressive, but only one that felt like it would be somewhat appropriate for Cole.  The next step will be to work with them to try to create the path for him that will feel wholly appropriate.  Never a dull moment!

If I stop to think about it and take everything going on at once, it’s overwhelming.  If I allow myself to think too much about the implications or potential outcomes of any one of these, there’s a darkness and sadness that creeps in.  At times it takes all I have to embrace the rites of passage that exist in my life, in Cole’s life.

More on that another time…There’s an amazing boy, young man, who needs me to be strong, smiling and his.  And I will be…I’ll be everything he needs.

 

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MOVEMENT OF FEAR
June 15, 2015

My mind takes me to dark places when I think of Cole going under the knife. His surgery is just three days away and we’re all feeling the stress. Cole’s anxiety is palatable and my husband and I are both on edge.

The pre-op and admissions are done and all that’s left is arriving day ready to stay for a couple of nights. The surgery itself could take about ten hours. Those are the hours I most dread. I have this unreasonable, unfounded fear of anesthesia. I don’t worry that the actual surgical procedure will go badly. I worry that he won’t wake up from the anesthesia or that he’ll have a seizure and it will go badly. My brain just goes to that place when it comes to anesthesia.

I know, in my heart and head, that it’s all going to be fine and I know that the anesthesia is not the high-risk part of the surgery. It’s just my darkness. Maybe it’s just how I cope with my own fears and anxiety about Cole having surgery.

My fear leads me to do things. I spin my wheels. I spend a lot of time researching and planning and organizing. It’s one of my coping mechanisms. It helps me to feel like I’m contributing to the overall success of his care and healing. I’ve got him on doses of Emergen-C (to help boost his immune system for hospital and vitamin C and zinc are both helpful in healing) and bone collagen (helps to heal tissue and bone). I can’t say for certain that they’ll help but his doctors agree it won’t harm.

I’ve got aromatherapy spray to keep the hospital room smelling comfortable for him. I’ve been dosing the room every night before he sleeps so it will calm him in the hospital room. I’ve created a soothing playlist with lots of his favorite songs so if he’s feeling woozy and in and out on pain meds, he can listen to quiet music to help him relax.

At the end of the day, all of the preparing and accouterments aren’t going to make as much of an impact on him as having his parents there when he wakes up and by his side in the hospital room. All that will matter to him is that we’re near and that we’re doing every thing possible to get him through this surgery and the long healing process as comfortably as we can.

All that matters to me is that he wakes up and eventually cracks that sweet smile of his at me. My brain will quiet and the fear will sit still.

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