Tag / coordination of care

by Julie

12 months, 55 days later

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Wow. What a really bad selfie. Why on earth would I post this? I am sharing it because I want you to know what devastation, loss, intense grief and sadness look like. This is me longing for my daughter. Wishing her back. It is a picture important to share because I am not interested in hiding how I feel. It is raw, in the moment and unedited – just like this blog post.

What is it about grief, sadness, extreme loss…depression (gasp!) that people seem to shy away from? Why does it seem so hard for many of us to wrap our arms around those people and show great patience, compassion, and support (beyond just texting about it). I think it is because it takes a lot of energy and time. Both very limited commodities in our very busy lives. It also takes a great deal of compassion.

I am grateful. Grateful because I have that support from very key people in my life. I am getting the space and time I need. I have had the attention and people following up when I have gone ‘quiet’. The friends who know the right thing to say, and when to say it. The friends who continue to reach out, even when I don’t answer, or repeatedly say ‘no’. The friends who sit with me and listen.

It is powerful, and I am grateful.

Kate’s loss rocked my world in many ways. I functioned in a state of shock for many months after. I couldn’t process that she was gone. Honestly, I still feel like she’ll come back, or I can bring her back. Like I am waiting for her.

The incredible amount of time, physical energy, cognitive energy, and emotional energy it took to parent Kate and take care of her left an incredible vacuous void in my life. The routine and relationships we had developed with her medical teams and our children’s hospital were wiped from our calendar. The relationships with therapists, schools, pharmacists, caregivers, nurses, personal support workers ended abruptly. The regular, ongoing advocacy and coordination of care to ensure this complicated little girl got the help she needed to live a full life had gone quiet. The intense medical needs of the last few months of her life just stopped.

I was exhausted from 8 years of intense caregiving to a happy, active little girl who was chronically unwell and medically complex, but when I closed my eyes I couldn’t sleep. Extreme exhaustion and sleep deprivation had put me into a state of insomnia. My body couldn’t adjust to the adrenal overload high I had been riding to simply keep me functioning day to day. My mind couldn’t settle from the trauma of the last 9 months of Kate’s life – what she had endured, and what we had experienced.

And with all this, I miss my daughter. The little girl I brought into this world. I love her and would do anything for her. I wanted so much for her. I miss her smell, her soft hair, the laughter in her eyes, her giggle, her soft hands, her hugs, her voice, the feel of her body when I held her. I could go on and on. In my thoughts I do, every moment of every day.

I talk to Kate often, usually she comes to me, and her words bring tears to my eyes. I know she misses me as much as I miss her. I know she left us too soon, because of decisions and under circumstances that I feel could have been different. I know she suffered because those charged with caring for her did not always do their best for her. Those thoughts haunt me. They cycle around in my head and they are constantly present.
It has been an intensely complicated grief. I would need time. A lot of time.

I cry. A lot.
I am slowly regaining my strength. But it has taken an incredible amount of time, and patience. Having the courage to be patient with myself, and understanding that I am forever changed is something I have had to learn, accommodate, assimilate. There are things that I no longer enjoy. There are situations that are uncomfortable and that I now avoid. There are people I have had to forgive, knowing that what they did was not ok. There are some things that are not forgivable.

There are also days that have some laughter, some light. I love being a mom. My children mean the world to me, and the relationship I have with my son Jack is one that I treasure beyond anything else. Time spent outdoors, connecting with this world and myself, running, skiing, cycling, yoga, surfing and more. There are moments when I think of Kate, ‘wouldn’t she love to be doing this’, and they are happy and reflective of her time in this world. There is some light and that is what I work on every day. Moving toward that light and the love, energy, and people that reside there.

I am writing this post today because on this day many of us are talking about mental health. I want to add my story, because story telling is how we share and learn best. This is a truth.

I want other complex care moms (and dads) out there to know I understand. I get it.
I want you to know you can call me. I will listen. I will try to guide you based on my own experience.
I want you to know that you are not alone and there are people who will listen, sit with you, hold your hand. Keep asking until you find that person. You will know them when you find them. They are the helpers, the ones you can lean on, the ones who will come without you even asking.

Don’t try and do this alone. It is too hard.

Thank you to my helpers, the ones who listen and continue to be there for me.

 

Julie 

 

by Julie

Home

I haven’t written a post specific to Kate in quite some time. I think the last one was when we had it hit day 110 and had already experienced many serious complications post bone marrow transplant. As I reflect back on that post, I can feel the raw emotion of those days. The exhaustion, fear, and anxiety. The crushing guilt of having made the wrong choice for Kate. Not knowing what the next week, or month, or her future would hold. Not knowing if she would survive, or come out of this entire mess intact.

And here we are, 7 months post bone marrow transplant, 219 days. I’m not sure much has changed. Except…

Kate is home.

She is not well, in fact she is still very sick. I think many people understand that when you are home from hospital you must be ‘well’ and ‘recovered’. Kate is neither. She is home because we fought hard to get her here. We saw her wasting away in a hospital bed day after day, and we saw no significant changes in her care or treatment, only unending complications. Any child in that environment would not thrive or survive. We could see the ‘shift’ happening in Kate – quieter, less enthusiastic, disinterest in getting out of bed, sadness and tears when her dad or brother visited and then left for home again. She had become accustomed to her little world of four walls and seemed resigned if not accepting that this was her world. She still had her smile and he chuckles, but a shift had happened.

 

The Shift

We received very difficult news about Kate in late August. Terrifying news. And we made a decision at that time that Kate would come home. As a child who required total parental nutrition (TPN), this was complicated. One of us had to be trained to manage her PICC (peripherally inserted central catheter), and the obvious choice was me because I was in Montreal with Kate, and most at ease with her medical equipment. Getting trained was another matter – we had been asking about ‘home TPN’ since July. We had been told that ‘yes, this was possible’, however, jurisdictional issues came into play as Kate was an Ontario patient in a Quebec hospital. It was not clear who would deliver the training I required and how they would address the issue of different equipment and set up. So we were delayed – again and again. Eventually it was our bone marrow transplant team at Ste.Justine who stepped up and provided ad hoc training during breaks in our daily hospital life. The home care team in charge of TPN training at Ste.Justine refused to assist us, or train me because of the jurisdictional issues, and Ontario would not let Kate come home unless I was trained. Our home hospital in Ontario does not do TPN training and we were given the option of transferring Kate to Sick Kids (who co-ordinate all TPN for children in Ontario) where we would have 2 weeks of intensive TPN training. I obviously said no to this as transferring Kate to another hospital was clearly not a safe option.
So, bedside training it was…sneaking away to a room to learn about pumps…reviewing heparinizing her PICC…antiseptic protocols…accessing the TPN to add some specific vitamins for Kate etc. It was a crash course and it was perfect (Thank you Karine and Martine!).

With TPN training ‘done’, now we had to sort out all of Kate’s complications, determine which medical team and specialist was the lead for what, outline an emergency care plan, outline a general care coordination plan, and have a comprehensive discharge planning meeting to discuss concerns or questions. Brian and I split that discharge planning meeting between us. He was in Montreal with our team of doctors and specialist there, while I attended the meeting in Ottawa with our team there. It was a typical multi-D (multi-disciplinary meeting) about Kate that we have done many may  times before, with about 20 people in attendance. After that meeting, a plan was beginning to come together.

 

Coming Home Would Be Complicated…

Kate’s bone marrow transplant was supposed to require 6-8 weeks in hospital. This would be followed by  a 6 month recovery in protective isolation at home, while her immune suppressive drugs were slowly weaned as her new immune system started to take form and recover. She had a perfect sibling match and was therefore at very low risk for unforeseen complications. She would be back to her life better and ‘healthier’ in 8 months to a year.

This was not the case for Kate.

Kate developed a serious condition post-bone marrow transplant called GVHD – graft versus host disease. Her GVHD recurred 5 times between April and August, and became dependant on steroids. This means even with careful reduction of her steroids, at a certain threshold of dosing – the GVHD would flare again. We also tried several types of immune suppressive drugs over the summer – hoping that we might find one that would be better at controlling the GVHD. Eventually, in August, the team at Ste.Justine took a very aggressive approach to the GVHD that was attacking and destroying Kate’s gastrointestinal system. By this time, Kate had not eaten orally with any kind of regularity, since mid-March. We had attempted several times to kick start her intestines with ‘trophic’ feeding through her NG tube of supplemental nutrition, and we would get to a certain point only to slip back into diarrhoea, nausea and vomiting. The symptoms of GVHD. We had at least 3 different discharge dates over the summer, that we would reach within days, only to slip back into the GVHD cycle. Then throw in a couple of courses of antibiotics for suspected infections, and a true blood borne infection that ‘stuck’ itself to her PICC line – requiring intensive antibiotics and the removal of her life sustaining PICC for 10 hours.

We were stuck and we felt like we would never get Kate well enough to leave the hospital.

Physically we could see Kate deteriorating further because of the prolonged time confined to a hospital room where she spent most of her day in bed. Kate wasn’t allowed to play in the hallways with the other kids, or go to the playroom, because of protective isolation – keeping her safe from others because of her immune suppressed state. She was allowed to roam the hallway on the third floor transplant unit – alone, but she tired of that trip pretty quickly.
Kate had also developed a tremor which we believed was from her medication. The tremor affects everything Kate tries to do independently – drink, dress, walk, play. The only time she gets a reprieve from it is when she is asleep and her body finally relaxes and does not shake. Muscle biopsies and scans did not show a specific cause for the tremor, but did now significant atrophy of her muscles and poor mitochondrial functioning (poor energy supply to her muscles). Combined with her significant weight gain from steroids, Kate was walking less and less.

In August, when we received very difficult news. I was home for a short weekend with Jack, maybe my fourth of the summer. Brief breaks where I could sleep in my own bed, change out my clothes from Montreal, enjoy the quiet of my home, and spend some time with Jack.
On that weekend, I received a call Friday morning from Brian and Kate’s doctors. I was asked to come back as soon as possible. I took Jack with me.

Kate had developed a very serious and unforeseen condition. We left our children with the nurses, and went to a meeting room with her lead BMT doctor and Kate’s nurse. We were given the details about what they had found after some diagnostic testing. We were told the condition Kate had developed was serious, and that given what they knew about her disease, she would likely die from it. We tried to be smart, to ask questions, to try and find the loop-hole or the error they had made in coming to this conclusion. Our doctor has kind eyes, and they are always full of hope. When I looked at him that day, I saw sadness – profound sadness for us and for Kate. In that moment I felt bad for him – that he had to take on this task. I asked him how many times did he have this conversation with parents?

He said, “too many times”.
I asked what we should do? What do we tell Kate? Jack?
“Kate is already showing you what you need to do” – he said. “You just need to follow her lead, she is going to show you the way”. “Just love her and follow her lead.”

Such powerful words. And true words.

And that was when we told the team we were taking Kate home. And they agreed.

 

And Now…

Obviously the epilogue to that moment is that Kate is doing much better. The condition she had developed stabilized to everyone’s surprise. It has not been ‘fixed’, but she is living with it and it is monitored regularly. We spent that weekend with our kids, loving them and playing with them. Taking them on picnics and taking pictures. We laughed and in the next moment we cried. Our hearts ached constantly, and we felt sick with fear – but we were focussed on ‘following Kate’s lead’ and she is a joyful and happy child, even when she is struggling.

On September 17th, we packed our van and left Kate’s room at Ste.Justine. I had joked with our nurses that when it was finally our turn to leave the hospital – as we had seen so many others do before us – I wanted a parade and balloons. Our entire team made that happen for us – cheering Kate on as she left room 2-12-23 for what we hope is the last time. (Since Kate has been gone, 4 weeks later, they still refer to room 23 as “Kate’s room” had haven’t had another patient in there yet.)

Home has been amazing – and exhausting. It has taken a lot of time and way too much energy to settle in. Issues with our TPN pumps, trying to set up a workable schedule with home care nurses and personal support workers, fighting to get Kate the rehabilitative therapy that she needs in place, trying to get back into a routine as a family after having lived apart for 7 months, and incorporating all of my new nursing skills and duties have been some of challenges we’ve had to meet.

I can honestly say that now, at week 4, despite being tired, we are finally feeling settled. Kate is doing well. She is happy and wakes every morning with a smile. She loves being home with her brother and we have seen a big change in Jack. He has carried an incredible weight for an 11 year old boy – not to mention the fact that he feels responsible for Kate has her bone marrow donor. I am happy to see them together again.
Brian and I are doing our best to keep medications organized and on time, prepare food for Kate (yes, she is eating again…slowly) according to antiseptic prep protocols, and keep our home sanitized and a clean environment for Kate. There is endless laundry, cleaning, and still sleepless nights from getting up with Kate every 2 hours – but we go for walks, we sit down to dinner as a family, Kate is living with us in her home and she is still here.

 

The moment I heard the news about Kate’s post-BMT complication in August.  I was in my car. Brian had asked me to pull over and he and the doctor talked to me together. On the phone I was calm, rationale, trying to pull the pieces together and find the way to push through. It is my natural state – find a way through for Kate. But when I hung up the phone and the news really hit me, I looked up. I looked up and I said, “I’m sorry!”.

“I’m sorry. I made the wrong choice. Please – PLEASE – don’t take her.”

“I’m sorry.”

I still feel that way. I may always feel that way. I am not sure we made the best decision for Kate. We have dug her into a incredible hole. But she is incredible and she may just have enough JOY and strength to climb out. She is that incredible.

Maybe in a year I will feel differently. Or feel profound relief and gratitude that she was not taken from me. That I got to keep her.

We are happy to be home. Joyful to be home.

 

Julie

 

by Julie

A Few Thoughts About Patience

I am tired of being told to be patient.

I’m pretty sure if I hear the word one more time, being directed at me in a syrupy semi-supportive/patronizing tone with a hint of caution from a person who knows little/nothing about me/Kate/or our story, I might just lose it on the next person I hear it from.

It’s been 5 months, and no one can seem to figure out how to get this GVHD under control. We’ve dealt with an 8 week BMT, a very poorly orchestrated discharge post-BMT, missed diagnosis, extremely stressful medical situations where we went unheard, mistakes were made, and Kate suffered as a result, and now the yo-yo back and forth two steps forward 5 steps back (and three steps sideways) of trying to control for a complication that wasn’t supposed to happen with no end in sight and a changing roster of people in charge of finding the solution to fixing it.

I am tired of being told to be patient. 

I do not feel patient and yet I wake every morning and focus on what needs to get done that day. What do we need to do to get Kate one step closer to home. What craft game story video iPad game sticker activity can we do that day together where I will need to dig deep to be engaged and patient within the four walls of our isolation room. What questions should I be asking? What plan can we make to get Kate better?

I am patient. I have been patient. I am patient because I have no other choice. And neither does Kate.

 

Being told to be patient and that ‘these things can take time’ is like telling a marathon runner that you have moved the finish line. Actually, not moved it, but hidden it and there is no MapQuest, or GPS, or map or even a damn sextant to find the finish line. (You even begin to wonder if the damn finish line even exists). Just keep running until you find it. Oh…and be patient. And that exhaustion and despair and frustration you feel? Just be patient. We have been so close to that finish line too many times.

Who ever coined the phrase ‘good things come to those who wait’ should be taken to an isolation room with an unwell child and locked in…and told to be patient.

pa·tience
/ˈpāSHəns/
noun
1.  the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

 

As of today , it has been 5 months. Kate is up and down. Feeling well for a few days and a glimmer of hope starts to grow that maybe, just maybe our patience has finally borne some fruit – only to be dashed again by the latest set back of loose/liquid green stool, nausea and fatigue. (You know that marathon finish line I mentioned? Think about having it in your sights…finally…only to have someone steal it away and move it again.)

We’ve been patient through the post-BMT phase with trialing 4 different immune suppressive drugs. Five attempts at steroid wean. Endless imaging and tests. Different doctors with different plans. Different nurses with different approaches. And not much has changed.

Kate has been patient.

Everyday is a test of patience amidst our exhaustion and fear and stress and hope for a good outcome.

Patience is wearing thin for both of us.

 

Julie

 

by Julie

CHEO Turns 40

Before my son was born, I had never given a second thought to having a children’s hospital in our community. The Children’s Hospital of Eastern Ontario (CHEO) was barely on my radar screen, and my only connection to it was through the media should it be mention on the radio, or in the news. I didn’t think much of those sick kids. It was sad, but it wasn’t my reality – it wasn’t something I thought much of other than to catch the CHEO Telethon from time to time.

After my son was born, CHEO still didn’t really register for me. My friends were young and just starting their own families and no one had any real experience with taking their child to the hospital. But as a new mom, I became more aware and more in tune with illnesses that might affect young children. I understood the need to protect him from illness and injury, and the stories I heard about ‘other peoples children’ battling diseases like Cancer and Cystic Fibrosis, or being treated for injuries caused by the typical childhood accident, were now more important to me and carried a different weight of parental concern, and now those brief glimpses of the Telethon were more important to me and I started to donate.

I am lucky to have a very healthy 10 year old boy, who has rarely needed to visit CHEO. We’ve had to wander through the doors of the Emergency Department for a suspected broken leg (age 2), pneumonia (age 2.5), and a concussion (age 9), and I’ve lamented the long wait late at night in the ED and then been grateful of the nurses and doctors who took such care and attention with him.

But I never really tuned-in to what it meant to have CHEO in our community until Kate was born.

Kate is my now 6 year old daughter who we thought was born healthy, but who has been diagnosed with an ultra-rare form of mitochondrial disease called SIFD. Her story is incredibly unique and at the same time is very similar to many CHEO stories. Endless visits to the Emergency Department, frequent admissions to CHEOs in-patient units that parents ‘in the know’ refer to as 4 East, 4 West, 4 North, 5 East, and endless tests and procedures. When our medical odyssey with Kate began, the importance of CHEO became front and centre to our lives.

What CHEO has to offer our community and our children could never be replicated in an adult setting. When you enter the doors of CHEO, particularly if you become a frequent user, you feel a sense of family and community. You recognize that these are medical professionals who understand children and unique approaches needed to ensure they are cared for the way they need to be. Child life specialists, physicians trained to work uniquely with diseases that affect children, nurses who understand that the littlest patients need and deserve more patience and understanding, a fabulous clown who can cheer your child or help them through a procedure like no other professional can – these are just some of the things that make CHEO special.

CHEO guides itself along a principal of “patient and family centred care”, which means the hospital sees patients and families as an integral part of the hospital culture. CHEO works with families to ensure that values, customs, cultures, beliefs and preferences are part of the decision-making that surround a child’s care. Families are seen as integral to the team and respected as ‘experts’ on their child and in providing essential information about their child’s health. It is a shared approach that is unique to a paediatric setting, and it makes an incredible difference in caring for a sick or injured child.

CHEO is celebrating it’s 40th year as a hospital. 40 years ago, a few moms in our community recognized the importance of having a hospital for our kids in our own community. I am grateful to them for the incredible challenge they took on and the pillar in our community that CHEO has become.

If you are reading this, and you know our family, you are likely someone who has used CHEO, or know someone who has. You already know how wonderful CHEO is and how important it is to our community. What I hope you do is share that message with others. Tell them your CHEO story.

This year, the CHEO Telethon is June 7 & 8 on CTV. I remember in years past watching parts of the Telethon as I went about my day, curious about the stories that were being told. I never thought our child would be one of those stories, but in 2012 she was. Sharing our CHEO story was our way of giving back.

This year I am honoured to be a ‘co-host’ for the CHEO Telethon and will get to share my experiences as the Co-Chair of our Family Advisory Committee and talk about the fantastic Champlain Coordination of Complex Care Program that has been an amazing support to Kate and our family.

CHEO Telethon 2014

CHEO Telethon 2014

CHEO Telethon Co-Host

CHEO Telethon Co-Host

Though it might still fly under the radar for you. If you have a child in your life, I am sure you feel an extra comfort in knowing that CHEO is there. You never know when or how CHEO will touch your life.

I hope you tune into the CHEO Telethon this year (June 7 & 8). Listen to the stories. Donate what you can. Take a moment to appreciate.

 

Julie

 

Post-Script

The CHEO Telethon raised over $7 million dollars this year! Incredible generosity and wonderful for our the CHEO patients and families.

 

by Julie

Coordinating of Complex Care

This blog post deserves a long and well written story. Unfortunately today is not the time for it. I don’t have the head space, nor the desire to sit at the keyboard (*gasp*), but I don’t want the opportunity to pass without sharing this recent news story on complex care coordination here in Ontario.

Coordination of Complex Care has many different titles and is supported in many different ways (or not at all) across the provinces and within Canada.  Comprehensive Care and Supported Care, are also titles used to describe the type of programs.

Coordination

These programs support children with complex and rare medical conditions. These children need support in the hospital to coordinate the large number of specialists involved in their care, coordinate their medically complex conditions, and also provide support in the community (nursing, community care access centre, therapies, OT, medical equipment). These are children with more than 5 different medical conditions, several specialists involved in their case, and technology dependant. They are children who are surviving challenging diseases and conditions identified in infancy and living longer thanks to advances in medicine.

When we hear ‘complex care’ or ‘care coordination’ we often think of the elderly population and the pediatric community is often forgotten or at best – overlooked. Although very small in number (less than 1% of children), children with medical complexity account for one-third of child health spending in Ontario (Dr.Eyal Cohen, Sick Kids)

These children are frequently hospitalized, and 25% experience readmission 30 days after discharge. They are high risk of medical error because of their medical complexity and gaps in care, communication and medical oversight.

Parents are left to step into the formidable role being left to them by the health care system. Overnight, parents of medically fragile, medically complex children become nurses, therapists, medical coordinators, and care coordinators. More than half of these families have a parent stay home and leave their career in order to care for their child. Financial problems, marital stress, sibling issues, poor health, and physical and mental stress overwhelm these families.

So the question is, What can be done?

I remember when we were having our most difficult moments with Kate’s health – and we had no one coordinating her care. We were crying out to anyone who would listen about the need for someone to be “in charge” of Kate’s case. Who could we turn to when things were not going well with Kate on a number of fronts? Her family doctor was simply over his head and had no idea how or where to get the ball rolling to help Kate.  Because of the siloed structure of our health care system, our pediatrician did not have access to Kate while she was in hospital, nor could he directly advocate for her with her myriad of specialists. There was a need to create a coordinated interdisciplinary team approach for Kate – and no mechanism for which to do it.

We were fortunate to be ‘in the right place at the right time’ as CHEO was just piloting their Coordination of Complex Care Program in March 2010. Kate was the first child admitted to the program. She continues to be part of the program 3 years on.

Here is part of that story:

http://www.capitalnews.ca/index.php/multimedia/#/kates-shadow.

 

Julie