Tag: surgery

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2020; A Year We Would Not Soon Forget

January 20, 2017 was my first post to my blog; www.harrislisa72.com. Life & Times Of  “The Tuckers”. ‘Living with severe depression and anxiety. Raising a child with cerebral palsy. The ups and downs of life; the rain and the sunshine’. A form of therapy that brought me through many very dark days. And here I am, January 2, 2021; posting again. Never in my life did I think this blog would last for years and would eventually be published into a book. And may I go further and say, books (two at the least). I can always dream; dreams do come true. This, I feel, will be a cause to pause from writing about my illness. As therapeutic as blogging has been for me, it has also been exhausting and draining; I’ve been misunderstood, stigmatized, traumatized and ridiculed. But that came with no surprise to me; it’s what having a mental illness does to a person. But I still had to write the truth, no matter what. What was meant to start out as therapy for myself, also became a means to help others, through my own experiences with a mental illness. I learned that, much like everything in life, we cannot change the world; nor did I think I could. But I did think I could help one person at a time. And if that meant putting my heart and soul into my writing (raw & honest) then I was willing to do so.  If it meant helping someone else, to save one life, then I was successful in what I set out to do.

In 2012, I had my last relapse, and was told by my doctor that I would not be going back to work; if ever. And here I am in 2021, still fighting my disabling, crippling, tormenting illness; an illness that has left me fighting for that one ‘good day’. But inside this physical body a war is still raging against my mental health. Over the past few years, life has introduced many triggers, many uphill climbs, many times when I just had to crawl. But I fight with what I have and there are times when that may not be much. But I fight!

When I look back over the past year, and wonder how I survived, I really am in awe that I am doing as well as I am. The year was filled with much sadness, loss, sickness, discouragement and I could go on, but what amazes me the most, is that we are still fighting; fighting against all odds.

When Lauren was diagnosed with Spastic Quadriplegic Cerebral Palsy in 2014, we knew we were going to encounter many challenges and obstacles; but we had no idea just how many; it was one thing after another, there was no end. We were told, when she was around one year old, that her vision was affected, they just couldn’t tell us just how much she was seeing. Being the naïve parents we were, we just  thought,  when she gets a little older she’ll just need glasses and that’ll take care of her vision. We were so wrong again.  When she was referred to the CNIB (Canadian National Institute for the Blind), we were literary in shock. We realized then that Lauren’s vision was not going to be corrected with a pair of glasses. My God, how were we going to get through this? How were we going to accept this? Sometimes you just don’t have a choice. Then she was referred to APSEA (Atlantic Provinces Education Authority) in March 2020. Their findings were what led to her being diagnosed with CVI (Cortical Visual Impairment). This has more to do with how the brain is interpreting what the eye is seeing. There is no cure per se. With intervention, improvement is possible, but not a lot of hope, in my opinion.

The year, 2020, began with Lisa’s surgery on March 16. This surgery was supposedly a routine surgery that would only require an overnight stay in the hospital. However, due to complications resulting from the surgery, Lisa was rushed back into the OR for emergency , life-saving surgery on March 17. This surgery resulted in  her being put in ICU on a ventilator, fighting for her life.

And if that weren’t  bad enough, the hospital was now on lockdown due to the worldwide pandemic of the Covid19 virus. Lisa had to experience this all alone because there were no visitors allowed in the hospital;  not even her distraught husband. You talk about an hell on earth, and that was exactly what we were experiencing. Lisa stayed in the hospital for eight days. Once released, we thought we were on the road to recovery; so we thought. To make a long story short, within five months Lisa was back in the hospital from August 23- September 3, due to more complications from that first surgery back in March 16, 2020; a nightmare for us all, especially our two children, Logan & Lauren.

Then, once Lisa was back home and settled in again, she had to find the courage to tell me that my sweet niece, Tonya, had suddenly passed away. Shock, grief and bereavement totally shot me down! The feeling of disbelief consumed my mind. How could this be? She was so young! Our whole family was lost in a sea of grief. A part of all of us was missing; that piece of your heart that you hold close to you, had now gone to Heaven.

It seemed like the year could not get any worse, but the pandemic was sweeping the world! Schools were closed for the remainder of the school year. Lisa was pretty much out of commission; what was supposed to initially be a six week recovery period, ended up to be a full year for recovery. And, here we were with a child that had CP, requiring 24/7 care; care that we had to provide on our own.  All the while, we continued to try to give our nine year old little boy as normal a life as possible.  In spite of it all, he was a trooper and we are so proud of him.

I had to believe that God was in the midst of all this chaos, because this was something we could not handle in our human strength. I prayed for God’s strength, comfort and protection to make it through these most trying times. He was and is faithful!                                                                                                                         

 

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The Year I Died

In 2012 someone died. That someone was me. Something changed that year that I have fought to resurrect, fought to bring that person back to life; to resuscitate. It’s now 2020 and I’m still trying to find that person who died. My spirit died, my enthusiasm, my zest for life died. Some days are worse then others but this week as left me feeling numb, no motivation; I’m still missing me. And I don’t like the one that’s left behind.

The new me is in a constant struggle to survive. The fighting as left me exhausted, tired and numb. I find it so hard to feel happiness, especially since that’s all I want. I believe happiness is something you shouldn’t have to fight for but should come naturally. And after all these years I thought I would be at a much better place of improvement with my mental health. But it’s like I’m still fighting to keep me alive. Still fighting to resuscitate that lifeless me.

I remember back in 2012, my wife Lisa, described me as a ‘walking corpse’. I’m sure I’ve improved pass that acute stage but it’s been a battle I fought every day. How much can one person fight and how long can a person fight before they come to a breaking point? That’s the question I’ve asked myself during the pass few weeks.

This year as brought many challenges and obstacles for everyone. The worldwide Covid19 pandemic itself as added so much stress and anxiety to us all. But for us, those living with a mental illness, this pandemic as been a trigger and frightening experience and many have found it hard to cope. I’ve certainly had my moments that’s for sure. At times when my wife Lisa was hospitalized for three surgeries in less then a year. Then Lauren with her already comprised immune system was hospitalized for cerebral palsy related issues. And our son, Logan, was thrown around in all this chaos and turmoil; a strong but worried little boy, dealing with issues that no little boy should not have to face.

So in the midst of a world that was so frightening, unpredictable and isolated, I felt the pressure of having to survive. There were days I thought I would crumble but I knew I had to be resurrected to get through this yet another life changing crisis. I knew that if I crumbled we were doomed and I could not let it happen. I was reminded of the safety regulations repeated by a flight attendant on an airline prior to take off. And it was advice that I had to use during this very stressful time. The flight attendant would say, ‘In the event of a drop in cabin pressure; air masks will be released from above your heads. If you are travelling with infants, small children, seniors or anyone requiring assistance with their mask; put on your own mask FIRST!’ And that’s what I had to do, put on my own mask first and  then I would be equipped to help those that were in my care. I was resuscitated once again.

Maybe the year to come will be my year to be resurrected. The year I come back to life! For everyone’s sake, I need to return, I need to be there for my family, in every way. I pray for strength, wisdom and endurance to press on, to never give up. To live again!

 

 

 

 

 

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No Options Left!

The screams of terror, fear and pain fill the house. No, we are not watching a horror movie; it seems we are living it. Logan rushes to close the bedroom door because he can’t bare to hear his little sister in so much pain. It was just Monday, October 22,2018 that Lauren had her third spica cast removed. For anyone having a cast removed is never pleasant but for Lauren it’s even worse because her cerebral palsy exemplifies itself by spasticity(tightness)  of the muscles.

Because her muscles have been unable to move within the cast: they are now weak, tight and very little control over her movement. If she is moved at all, even to do a pamper change, throws her into an horrifying rage. We have to put her in a bath of epson salts and very warm water to help relax and awaken her now ‘sleeping’ muscles. Getting her from the bed to the bathtub is nothing short of a nightmare. She is clawing at my neck in hopes of getting relief from the fear and pain. Once she gets in the tub with Mommy, she starts to settle down and relax a little, to a point where she is just floating. We do this for about twenty minutes. Then its time to get out and the terror starts all over again.

Why am I telling you all of this? It’s because I want to educate and make you aware of what’s involved in caring for a child with a disability. And also to make you aware that our insensitive, non caring, non compassionate Government does nothing to help. We has her parents feel so all alone and no support, we have to provide 24/7 care ourselves with  no respite care because we can’t pay for it ourselves and our Government as declined  any help whatsoever. We are not complaining about what we have to do, because we love Lauren and would give our lives for her. But we believe we deserve a little help from our Government to receive some respite care. We are only human and we are running on empty and this road is just beginning and we are falling beneath the load already.

What do we have to do to get some help? I am tired of pleading with our Government officials MHA, MP, Minister of Health, Minister responsible for the Status of Persons with Disabilities, etc. Where did I get with all this advocating? No Where!

Where else can I go? What else can I do? We have run out of options and feeling exhausted and overwhelmed. Who can help? Who will help? Someone as to do something and I’m calling upon our Government to get their heads out of the sand, to hell with policy and do what’s right for this little girl and her family.

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Lauren’s Eye Surgery. A Curve in the Road.

Early mornings and I don’t agree, my brain is in a fog and my body just doesn’t want to move. The clock alarms at five-thirty am, but I just went to sleep, but I better get my butt out of bed. Today we have to go to the Janeway for Lauren’s eye surgery.

We take Lauren out of the bed; body, bones and pajamas. Wrap her in a blanket and settle her into her car seat. Uncle Dale comes up to stay with Logan, I’m sure they’ll have a day of adventures. And then its off we go for the adventure of our day. It’s like we’re on auto pilot, we just do it. Not like this is the first time but if we stop to think about what we are doing; we might fall apart. Before long we arrive at the hospital and head for the surgical floor, where Lauren is prepped for surgery and dressed in a royal hospital gown. Now we’re in the waiting area, dreading our next move and passing her over to the team of medical professionals. This makes us feel like such horrible parents, but we know we have to do what’s best for Lauren.So now we wait and wait some more…

A nurse arrives to take Lauren to the OR, Lauren screams in fear. The saying, ‘ignorance is bliss’ doesn’t work for Lauren; she knows exactly what’s going on, she’s been down this road many times before. And she knows that she will not return the way that she went in but she knows that at least she won’t have a body cast. That was one of her concerns prior to arriving at the hospital.

After approximately an hour, her surgeon comes out to us with the good news that the surgery went fine. Relief floods your body like water in a pool. The next few days will be very uncomfortable for Lauren, but that’s to be expected. She is so resilient, strong and courageous; a fighter like none other. I have learned so much from her, she is my inspiration.

Wish I could say, that’s it for surgeries and visits to the Janeway but I believe we have only begun. The doctor that diagnosed Lauren, four years ago, knew what he was talking about when he said, ‘she has a long, hard road ahead of her.’ Little did we know just how long that road would be. Just for an example; while we were sitting in the waiting room today, the phone rang and it was the orthopedic department with an appointment for Lauren’s third hip surgery; on September 12th, just two weeks away and she’ll be in a body cast again! Her eyes will not be fully healed and she’ll embark upon yet another surgery. With no end in sight, maybe just a curve in the road.

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Are the Roads Bumpy Today?

I know sometimes it seems like my blog is all about my own illness and sometimes that’s probably true because I feel I can talk about myself and it doesn’t bother me too much. I try desperately to update and fill you in on Lauren’s journey with her cerebral palsy. But to be honest; I often put it off because at times it is just too painful to write about. An innocent angel that doesn’t deserve what life has put in her path. The last time I shared was on May 16th, when Lauren had her osteotomy on her left hip. And then she was in a spica cast for 6 weeks; we did all survive but it was rough going. Lauren has had more then her share of pain and challenges. And then  there’s Logan who’s caught in between all this chaos. But he’s such a great, big brother; they just adore each other.

Just when we thought it couldn’t get any worse; on June 26th she had the cast removed. We were certainly not prepared for the horrific pain that Lauren would have to endure. For weeks, every time she moved she would go into a rage of screaming in pain and fear. This was especially difficult for Logan as well, he didn’t like for his little sister to be in so much pain.

It’s now July 8th and Lauren is still having pain and pretty much confined to her bed where she fines most relief from pain. She is very limited now to what she can do; she does sit up in her chair for approximately 45 minutes but then she wants to go back to bed. And riding in the van is very uncomfortable and painful, especially on a bumpy road and most of our roads are fairly rough. I was putting her in the van today and she said, ‘are the roads bumpy today?’.

Today, July 10th, Lauren saw her surgeon again. He wanted to do the other hip next week but couldn’t get it worked out, so he is now hoping for the following week. How are we going to put her through all of this again? Oh my God, life is so unfair. No matter how many tears that fall, it doesn’t change a thing. No matter how many prayers we pray, the reality of the torture, pain and tears don’t go away.

The continuous, never ending surgery after surgery consumes every ounce of strength we have. Days when you feel you have nothing left to give but you have to go on. So much depends on us, so much responsibility, so much care. Lord, how do we do this again and again? My faith cries out to you today, please help! We cannot do this alone; a power, a strength greater than ourselves has to intervene. Please help us to trust in you. Our ship is sinking in this storm of life; please wake up, don’t you care that we perish?

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Lauren’s Incredible Journey Through Surgery

Having a child with  special needs, opens your world to an whole new perspective on life. A world that is challenging, demanding, empowering, loving and hopeful. There are definitely many ups and many downs, each one bringing with it a flood of various emotions. With Cerebral Palsy every day is a new day, each day a new challenge, you never know what’s waiting around the next corner.

That’s what brings us here today at the Janeway Children’s Hospital. Lauren was admitted yesterday and her surgery is scheduled for 11 O’clock AM. Lauren will be having both a femoral and acetabulum osteotomy on her left hip.

Lauren was just taken into the OR and won’t be back until at least 4 O’clock, that makes it over a four hour surgery. You have no idea how we are feeling at this very moment, there are no words to describe it. Now we have to wait, there is nothing in our control. Her life is now in the doctor’s hands and we have to surrender her care to them. But I have to believe that there is a greater power at work here and He will take good care of her and bring her back to us.

It was a very long day, longer then expected really. She got back to Special Care around 6:30pm. Not all that responsive, not wanting to wake up, very weak. But that is all to be expected.

All day Thursday she slept most of the day. Her hemoglobin was down but they wanted to wait and see if she could build it up herself. The following morning it went down again so they had no choice but to give her a blood transfusion. Hoping this will help with getting some strength back and make her feel a little better. The neurologist is coming in soon. Her speech is very different, slurred sort of, could be meds but they want to make sure. So far now that’s the update; now we just wait again.

Neurologist confirmed that it’s her seizure medication plus all the pain medication, that’s making her over medicated and thus the slurred speech. So now she as to stay at the hospital until that’s clarified. We thought we were going to get out today (Friday) but that’s not going to happen. Hopefully tomorrow things will get better.

Well, tomorrow is here (Sat. May 19) and things are looking a little better. Lauren had pain through the night and still has slurred speech this morning. They done blood work again to see what her hemoglobin levels are; hopefully they are increasing. She’s still lying on her back and  hasn’t been out of bed or sat up yet. She could really break your heart if you let it.

Logan as been a real trooper through all of this, he’s spent most of his days at the hospital with us. He is Sissy’s biggest fan and was very upset when she came up from the OR. He couldn’t understand why Sissy wasn’t talking to him, that was a first.

It’s Lauren’s fourth day in the hospital and she’s doing a lot better. She sat in the chair and went for a ride in her wheelchair. She still has pain and spasms but it’s mostly controlled by medication. Taking her home is going to be the hardest, getting accustomed to her being in a spica cast is certainly going to be a challenge.

Lauren is getting back to her fiesty self, thank God. She’s ready to exit this place and get home. It’s Monday (she came in on Tuesday) and it looks like we are going home. Scary and excited at the same time. She requires so much care and lifting; we know it’s going to be rough but we will do it.

Once she’s home, let the healing process begin. Because once she’s recovered from this surgery (around 3 weeks) it’s back in for more surgery on her right hip. Oh my, I don’t know how we are going to put her through this again; this will be her third hip surgery. It sounds so cruel and it is but it as to be done. It’s all part of a plan to help release some of Lauren’s spasticity so she can be a little more comfortable and help with some mobility. All of this seems so unfair, so cruel, so senseless and there’s not a thing we can do about it; helpless.

Once both hips are back in socket and she is fully recovered from both hip surgeries; it’s then we are off to the Children’s Shriner’s Hospital in Montreal. It’s there she will have a baclofen pump trial; to see if the baclofen will help to release some of her spasticity. Baclofen is a medication used to treat spasticity. If the trial works then she will have a surgery where a puck-like device will be inserted under the skin of her belly, called a baclofen pump and a tube going directly to the spine with a constant supply of baclofen when needed. Then the pump will need to be refilled every six weeks and the pump itself replaced every seven months. Which will have to be done surgically each time. Hopefully the baclofen pump will work for her. If not we are running out of options.

The only thing left would be the rhizotomy surgery on her spine. Which she is not a candidate for right now. This surgery is very invasive; they go into the spine and cut certain of the nerves that controls the spasticity to certain muscles and permanently release some of her spasticity. This is the surgery that we feel as her parents, would benefit her the most. It would give her some form of mobility and comfort; long term. Unfortunately, we are not the ones making that decision.

All of this seems so overwhelming as parents; and it really is. Everyday is long, tiring and unpredictable but we do what we have to do. Life is so different now, we have to trust in an higher power for strength because we could never do this in our own strength. I wish I could take Lauren’s CP away, she is so bright, funny, strong, courageous, beautiful and deserves to walk. Sometimes life is just not fair!

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I’m ANGRY!

Anger isn’t an emotion that I like to feel. But I’m human and today I’m angry. I’m not angry at God, He is the one and only person that I know I can pour my heart out to and He understands. So no, I’m not angry at God; He’s my Rock, my burden bearer, my healer, my friend.

So often we have the tendency to blame God for anything that goes wrong or is wrong in the world. I’m guilty of doing that myself but this morning I realized that He is not to blame for what’s going wrong but is to be praised for what is going right and know that He is with us when things aren’t going so well. And sometimes He even allows these things to happen to make us stronger. 2 Corinthians 12:9-10 “My grace is sufficient for you, for my power is made perfect in weakness”….”For when I am weak, then I am strong.”

Lots of times we feel guilty when we become angry because “Christians” shouldn’t feel that way. Well we do feel that way sometimes and that’s okay. Jesus became angry on several occasions;  In Matthew 21:12-13, He became angry at those who were exchanging money at the Temple. In Mark 3:5 “He looked around at them with anger”. Jesus was angry at times, yet did not sin, Hebrews 4:15. And likewise, believers in Christ are taught, “Be angry and do not sin” Ephesians 4:26. While anger is often viewed as a completely negative emotion, there are times a person can be angry for appropriate reasons. In Jesus case, His anger was the result of ungodly attitudes and actions by those around Him.

So today I feel my anger is totally justified for good. I guess you could say I’m angry at “the System”, medical that is. You see, Lauren was scheduled for hip surgery on March 12th; much to our dismay it was cancelled, no explanation, no rescheduled appointment, nothing. Now here is a four years old little girl going around with “two” dislocated hips, in pain; totally inhumane in my opinion. After several calm and polite phone calls to inquire about a rescheduled surgery date, we were given nothing. So on April 30th (now a month and an half as gone by) I decided I’ve had enough and we have to get a date to get this surgery done.

I introduced myself to the secretary on the phone, and stated my case and said if I hadn’t heard back from her doctor by the evening, I would take my story to the NTV News. Now up to this point she could not tell me when or if Lauren was going to get this surgery done. Yet here was Lauren still going around with two dislocated hips, had to take her out of swimming because it hurt too much, couldn’t do physio therapy anymore, couldn’t sit crisscross and in pain.

Maybe ten minutes later my phone rang, her doctor was on the other end with an appointment for May 16th. Now if I didn’t get angry, would we have gotten that appointment? I think not! Ten minutes before and the appointment secretary didn’t have one. i’m sure they won’t be rolling out the red carpet for me at the Janeway, anytime soon. But I’m not trying to win any popularity contest with them, I’m trying to get the best healthcare for our child who deserves nothing less but the best. And right now I feel she’s not getting that and I will not give up without a fight. Although this may exhaust me of every ounce of strength that I have, I will not give up! You Go Lauren!

So Lauren, when the Janeway may have given up; Mommy and Daddy haven’t and will never. And remember the Great Physician has the last word! Matthew 19:14 “But Jesus said, suffer little children, and forbid them not, to come unto me: for of such is the kingdom of Heaven.”

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Lauren’s Hope of Walking

i..Lauren as seen Dr Farmer three times, each time we were told she was not a good candidate yet. The last time we were there he told us he would see her when she’s five, unless we thought she was stronger and more ready for the surgery before that time. So we just sent an email to him requesting that he would see her sooner because Lauren is stronger and that her window of opportunity for her to want to walk is closing. So pray with us that Lauren will get to have the surgery and that it will be successful.Doctors at Montreal’s Shriners and Children’s hospitals are spreading the word that a specialized surgery for cerebral palsy patients that can help relieve some of the spasticity of the condition is offered in Canada.
Dr. Jean-Pierre Farmer, the chief of neurosurgery at Montreal’s Children’s Hospital, is one of the few doctors in Canada who can perform the surgery, which is called selective dorsal rhizotomy, or SDR.

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The procedure can help alleviate some of the symptoms of cerebral palsy, particularly the muscle stiffness that can lead to chronic pain, exhaustion, and disability.
Cerebral palsy affects roughly 2.5 out of every 1,000 babies born in Canada every year, and is caused by abnormal brain development or a brain injury during pregnancy or birth. The spasticity caused by CP makes it difficult or impossible for children to move their limbs in isolation. Those who do learn to walk often do so on their tiptoes with their knees close together so that they need a wheelchair or braces to walk.
The SDR procedure involves exposing the nerves in the spinal column and cutting those nerve fibres that cause muscle tightness using electrical pulses. The nerves that properly control movement are left intact.
If all goes well, and all the affected fibres are cut, it can be possible for children with CP to learn to walk independently.