Archive for the ‘Surgery’ Category

BLUE CHRISTMAS (Elvis Presley)
December 24, 2019

Today is Christmas Eve.  We’ve been living at Children’s Hospital Los Angeles (CHLA) since December 4th.  Cole’s surgery has been rescheduled due to a cold he caught here.  If all goes well and he stays healthy for the next weeks, it will be January 6th.  We thought by January 6th we’d be well into healing but have hit bumps all along the way.

Christmas Eve is Cole’s favorite holiday.  For seventeen of his Christmas Eve’s, we’ve gone to my brother’s house to celebrate with our family and extended family, usually my sister-in-laws siblings, their kids and her dad an his wife.  Sometimes her half siblings and their children join as well so there’s 20-24 people gathering together for a night of fun.  We arrive with a non-gender grab bag gift, ready for a great night. The evening starts with cocktails and appetizers as everyone tumbles in.  Lots of catching up and lively chatter.

Eventually we all take our assigned seats and the feast begins.  It’s a traditional roast beef and Yorkshire pudding meal with two salad choices, two veggies, mashed potatoes, au jus, horseradish and lots of yummy wines.  It does not deviate.  Convivial conversation abounds as we all devour the delights.  Once we’re done eating, we migrate to the living room were we all don crazy Christmas hats that my brother has collected over the years. Some are Santa hats, some silly ones, some Hanukkah ones (we’re a multi-cultural family).  We then choose our day of Christmas and sing a rousing, often terrible Twelve Days of Christmas.

While we’re singing, someone sneaks out and throws on a furry, plush Santa suit and beard and appears just as the singing ends with little gifts for the younger ones.  Over the years it’s been most of the adults, and more recently the eldest of the cousins.  It’s silly but depending upon who is Santa that year, can be quite funny.

Following Santa’s visit, we settle back around the tables with cookies and sweet treats and take an annual holiday trivia quiz to determine the playing order for Dirty Santa.  Once we set the order, the game begins.  Starting from low to high, someone selects a grab bag gift. The next person can either steal (maximum of three steals per gift), or choose a wrapped grab bag gift, and so on.  The coveted gifts get stolen until they can be stolen no more.  Gift cards and tech gadgets are popular.

At this point it’s nearing 11:00 pm and everyone’s winding down, heading home, getting ready for Santa and the next day’s festivities.  In Cole’s mind, this is the perfect night.

Sadly, this year we’re stuck at CHLA.  It’s a fantastic hospital to be stuck in if you find yourself stuck in a hospital on Christmas.  But nevertheless, we won’t be with the rest of our crew and one of us will wake up at home alone (me) tomorrow because only one parent can stay the night and it’s my husband’s night.  We were gifted a little faux tree this morning complete with twinkle lights and few ornaments and have a festive collection of holiday stuffed animals that have been gifted to Cole by thoughtful visitors lending further to the holiday feel, though it somehow still doesn’t quite feel Christmasy.

Cole seems to fluctuate between being happy and sad when reminded it’s Christmas Eve. I think he might rather just have the next two days pass without much fanfare as we inch closer to the January 6th date.   Tomorrow I’ll bring a festive bag, left by Santa, with his gifts and hopefully it will be a cheery day.

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

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.

 

Posted in cerebral palsy, Family Life, Fear, High School, Independence, Life, Special needs parenting, Surgery | Tagged: , , , , , , | Leave a Comment »

JUST LIKE STARTING OVER
September 19, 2017

I’m one month out, post surgery. I got the clearance to begin easing back into physical activity. I can walk with vigor, exercise moderately, and tend to some of Cole’s needs (still not quite ready for heavy lifting, but can move towards it over the next few weeks). I’ve been back in the office since the start of the third week. I tired quickly at first but I feel like myself again.

Yesterday all of the surgical tape was removed, and I got my first clear view of my new self. While the procedure was prompted by health concerns and constant pain, I must say the superficial benefits of it are pretty amazing. I actually have breasts that fit my frame and compliment my body. I feel lighter, stand taller, and am completely inspired to get the rest of me in better shape to better suit my new boobs. All of my clothes fit differently too.

As I wrote previously, the aching pain I have suffered from for twenty odd years is gone. Though I haven’t been able to lift Cole yet, I can tell that not having so much body in front of me, will be an asset in lifting him safely and more comfortably, especially as I move deeper into my fifties and beyond. The need to lift him and support his body whilst taking care of personal needs and dressing is not going to end.

It will be several months before I’m completely healed, and at least one or two more before my new breasts settle into their final size, but even just four weeks in, I have to say it was worth all of the hardship I’ve inflicted on my poor husband and child, who have had to make adjustments to their routines to accommodate my needs. At the end of the day, it’s just a few months in the lifetime we will continue to share. From here on out, each day will give me a chance to get stronger, healthier and to become more the self I dream of.

Doing something this major, largely for myself, has taught me that it’s okay to take chances on myself. I view it as an opportunity to reset some of the habits I’ve fallen into over the years of my adult life. I am eager to continue transforming myself both physically, through better eating and regular exercise, mentally, by engaging in things that interest me and feed my soul, and emotionally, by trying to be a better wife, mom, friend, daughter, sister – a better me. My guys and my friends have shown tremendous kindness, support and love during this process and I want to keep that alive in all of my relationships.

Who knew that new boobs could lead to such a whole being revolution?

Posted in cerebral palsy, Family Life, Gratitude, healing, Life, Love, Marriage, Motivation, Special needs parenting, Surgery | Tagged: , , , , | Leave a Comment »

CHANGES
September 18, 2017

It’s not often that parents of special needs kids do anything to radically rock the boat, but I recently did something radical that impacted everyone in my family. I got a breast reduction. I have contemplated doing so for the better part of fifteen years but held back for any number of reasons – cost, time off work, the physical restrictions, my weight, and the fact that electing to have surgery made me nervous.

I researched and researched and finally decided to just go in for a consultation so I could learn my options, my potential outcomes and whether it could be covered by insurance. My surgeon took one look at my bare, braless breasts and exclaimed, “They’re huge!” Followed by “Please let me help you”. I was simultaneously amused and taken a back. She’s a breast surgeon; surely she’s seen large boobs. Apparently mine were in a class of their own. Who knew?

I learned that there was little doubt that my insurance would approve the reduction and that the surgery itself is considered a fairly simple surgery. There’s no muscle or organ cutting and it generally is a 3-4 hour procedure. I learned about the post-op care, very limited movement for the first couple of weeks, and no lifting or sweat worthy exertion for several more. This again gave me pause because I have a 15 years old child who I lift and transfer and dress and change. How would that work with just one of us being able to do that for nearly two months?

My husband was supportive and cleared his travel schedule (he travels a lot for work). He assured me we could get through this and that it if this surgery was necessary and wanted, we’d figure it out. We do have a history of getting through all kinds of challenges, obstacles and uncertainties. Part of it comes with the territory of special needs parenting (you have to be very malleable) and part of it comes from us being a pretty good team.

So I moved forward and got it on the books. It was initially scheduled for August 14th, the day before Cole started his sophomore year of high school, but it got moved to the next, his first day of school just weeks before. We enlisted childcare to be home when his school bus arrived in case we weren’t yet home (the surgery was supposed to be 3-4 hours, starting at 10am so chances were good we’d be home on time), but just to be safe…childcare in place.

I cleared it with work, with the plan to work from home after the first week and then take it from there. I’ve been at the same company for many years and had their full support. It goes without saying that telling your male bosses that you’re having breast reduction surgery is quite a funny experience! Lots of gulping on both sides and averted eyes!

I got cleared by internist and again by the surgeon, and off we went.

My surgery lasted hours longer than a typical reduction, over six hours. I felt groggy leaving the surgical center, but immediately noticed the effect of the reduction. My neck, shoulder and back pain lifted. I had drains and tubing sticking out of my sides, obstructing most of my arm movement and I felt sore. I was warned that they do a lot of lifting of your torso and twisting during the surgery to ensure that everything is even, and in place properly and symmetrically. The after effects of that did not go unnoticed.

It will be months before my new breasts are completely healed and able to lead a normal life but almost instantaneously the effects of the surgery are life changing.

More to come…

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