Tag / case coordination

by Julie

The Journey Home – Part 1

Kate, November 2015

Kate, November 2015

On Saturday, November 28th, 2015 we brought Kate home from CHU Ste.Justine in Montreal. She was very sick from post bone marrow transplant complications. Her most responsible physician, Dr.Michel Duval, had determined nothing else could be done for her. He suspected an acute pancreatitis, possibly brought on by her graft versus host disease. Surgery was considered, but it was felt Kate might not be strong enough to endure the procedure. Another option was to bring Kate home, keep her hydrated and manage her pain with the hopes that she might recover.
Kate died at home November 30th. I have never told this part of her story, about her coming home. In memory of the anniversary of her death, I wanted to share it with you over the few next posts on this page.

 

PART 1: Monday November 23rd to Friday November 27th, 2015

Kate was admitted to CHU Ste.Justine from home on Tuesday, November 24th. She had been examined by Dr.Major on Monday in the MDU at CHEO. Kate was having pain, was not eating, her BMs (bowel movements) had changed again and her need for oxygen was unchanged. I was scared, confused, and had that gut feeling that something was terribly wrong.

Dr.Major was very caring, empathetic, but also had her serious face on. I had seen that before. She had taken on an enormous responsibility to try and navigate my little girl through the brutal post BMT complications over that fall. It was not her area of expertise, but she had stepped up in the absence of any others. She and I had a strong relationship over 5+ years. She knew Kate and she had been part of the team to recommend the bone marrow transplant. I think she felt incredibly responsible to her and to me.

Christine was not in clinic, Erin was in her place. I felt comfortable with Erin, but I longed for the ease I had with Christine. In those moments, I missed her calm presence and the history we shared over Kate. I was grateful for that small comfort over those few hours in MDU that day.  As I fought back tears and a sense of panic, I asked Dr.Major, “What should we do. I think this is GVHD”.  Dr. Major answered that she would consult with Dr.Duval by phone. She left and when she returned a little later she said, “Dr.Duval agrees, he feels the GVHD has returned”. It was a simple statement. It turned my world upside down and my heart sank.

The look that passed between us in the moment was doctor to mother, mother to mother, friend to friend perhaps. Devastation. Fear. Sadness.

Disbelief. How could this be happening?

I tried hard to control my tears. Fight them back. To stay strong and stoic. To be brave for Kate. It was a living nightmare and I felt panic and bile rise to my throat. “Don’t show it”, I thought to myself. “Stay in control. Think. Think. What is next, what can we do next”.  Kate was watching us closely and being silly as she mistook a young resident who was with Dr.Major for Christine. “Christine” Kate would say, waiting for her favourite nurse and friend to say “Hi Kate”. The resident was confused, and looked at me. “She thinks you’re Christine, her nurse”, strangely annoyed as I tried to explain. She looked at me with a blank look. She was young, the situation was clearly over her head, and she did not know our family. It was a familiar situation from the past 8 years. I directed my look to Dr.Major and she understood that the moment had come to ask this person who was not part of our circle to leave. She couldn’t understand or fathom the journey we’d been on, and the incredible crisis we now faced. I felt incredibly vulnerable and I did not want to break down in front of this stranger. Dr. Major understood. The resident left the room for something, she didn’t return.
I quickly began gathering our things in the room. Little room #7, the smallest possible exam room ever. The only one we had ever really known in our 5+ years in the CHEO MDU. Too small for Kate’s wheelchair or to fit more than 2-3 people comfortably, and yet, how many people had we squeezed in there at a time as they poked and prodded Kate? Maybe 6 or more sometimes? On that day we had at least 7, including Kate, as our palliative care team as visited and assessed Kate. And how many times did we have to rearrange the room so we could conduct a procedure in there with access to both sides of the tiny cot. “It is ridiculous how small this room is, and how much time we have spent in here”, I thought to myself as I gathered our things.

I kept my head down. Not wanting to look up and meet anyone’s gaze for fear that the tears would start to fall, that I would ‘lose it’. I didn’t want that to happen. Not in front of them, or Kate. “You have to stay strong, you have to keep it together, you have to figure out what to do next”, I told myself. In those moments, no one said a word. Maybe there was nothing to say, maybe there was too much to say. No one knew what would be appropriate. “Was this the end?”, I am sure they were all asking themselves.

Kate said goodbye to Erin and Dr.Major, she continued to wave goodbye to people we knew in MDU as we exited for the last time. Smiling and waving despite it all. As I neared the door to leave, the tears started to fall. We would never return to the CHEO MDU.

The following day, Tuesday, November 24th, Kate and I arrived to Ste.Justine with Brian. Usually my dad drove us to Montreal for our weekly Tuesday appointment at the out-patient clinic. Today was different. As I packed the night before, I packed extra clothes and supplies for Kate. I packed the dry boxes and chargers for her cochlear implants, extra diapers, pyjamas, toys and puzzles. I also packed an overnight bag for Brian and I. I told my dad that I would not need him to drive us but would he please watch Jack. I didn’t know when we would be home.

I knew. 

The day was long on Tuesday. Our usual bloodwork was done, the dressing for Kate’s PICC was changed and the ‘caps’ to her PICC line also changed. As we entertained Kate in her isolation room, Dr.Duval came in and we discussed the plan. He wanted Kate to stay. Her bloodwork was showing unusual deviations in potassium and calcium, and she was clearly not feeling well. He felt we needed to get Kate back on TPN (total parenteral nutrition), where she was fed through her veins, being unable to digest anything directly from her gut. The GVHD was causing this. To start TPN, we had to be admitted.

I agreed, but was insistent that we get the TPN sorted out and then communicate quickly and directly with Ottawa to get the formulation compounded and delivered to our home. This had been an incredibly difficult thing to set up over the summer and early fall of 2015 in order to get Kate home. Since the plan had already been done once, I hoped it would be easier the second time. Dr.Duval agreed, but his demeanour was more of a ‘wait and see how things went’.

That day in clinic was long. I was spent emotionally and physically. I felt like I had nothing left and as I look back now, I think I knew how unwell my daughter was and that anything could happen. The past 9 months and the incredible stress reached a tipping point. I had been so resistant to this up until now, even when Kate was diagnosed with her acute onset hypertrophic cardiomyopathy in September, and we were told she would likely die from it, I did not believe it. Now I could feel the sense of panic, dread, fear, exhaustion set in. We had been through so much, and Kate had been through so much. I believed in her, but now I was scared.

I can describe in detail the two moments when I ‘lost myself’ during our 9 month BMT journey. This was the second moment as Brian was out of the room and I was alone with Kate’s nurse, Johanne. I cried. Hard. Big, snotty, hicuppy, heaving sobs and tears of grief. I was scared, “I can’t do this anymore. Kate can’t do this anymore. What have we done? Why is this happening? I am so scared”, I repeated over and over. The words poured out of me. Johanne listened and held me. I leaned into her.

Brian and I decided that I would go home and he would spend the night with Kate. I wanted to get back to Ottawa and try to coordinate things from that end in hope of getting Kate home sooner. I had learned from experience that I needed to be ‘on point’ with organizing discharge, coordinating home care, facilitating our TPN coordination, etc. We had learned through this process that though we had our complex care team championing us, I needed to work closely with them to make things happen. Kate did not have a the support of a post-BMT team at CHEO. Between Ste.Justine, complex care and myself, we had to fill that gap.

As we went upstairs to the hematology/oncology inpatient unit at Ste.Justine, we did not go to our usual room 2-12-25, but to a room closer to the nursing station. It felt foreign and turned around. Though we felt safe with the incredible nursing team at Ste.Justine, something did not feel right. I think Kate felt it too. It was late in the day and time for bath and bed. Kate was sad and kept signing and saying ‘Home, Home’. I can’t remember if she cried, but I knew she was sad. She wanted to go home, she did not want to stay. Was she scared? Did she know? My smart little girl had an incredible intuition for people and situations. Did she see the fear and sadness on my face?

It was incredibly hard to leave her that night, but I knew she was safe and with Brian. I wanted to get home in order to get her home. I had to make that happen.

Over the next 3 days there were phone calls between myself and CHEO palliative care, myself and CHEO complex care, myself and Ste.Justine (nursing, physicians, dietician, GI) trying to advocate for Kate and for her return home. I was met with reluctance by Ste.Justine as it was felt Kate was not stable enough and because of her fluctuating bloodwork they wanted ‘more time’ to sort out her TPN. I knew that if we did not get things sorted in the early part of the week, Kate would not get home for the weekend. CCAC (Community Care Access Centre) who would be in charge of Kate’s TPN at home, does not operate over the weekend (fyi: nothing in medicine happens on the weekend – it is a M-F 9to5 business).

I visited Kate over FaceTime. She would wave and giggle, signing and saying “Come, come”. I told her “Soon”, and she would sign back “Soon”. I made sure Brian was supported by Maimoona that week, one of the care providers we had hired privately to give us some respite during the long days in isolation. Kate was happy and joyful, despite the fatigue I could see in her face.

Finally it was determined a ‘case conference’ meeting should be held. These are meetings with multiple clinicians and service providers involved in the case. They wanted to discuss next steps for Kate between the CHEO and Ste.Justine teams, and I wanted to discuss getting her home. The meeting was held on the morning of Friday, November 27th, 2015. It was a videoconference between CHEO and Ste.Justine. Kate’s most engaged teams were there; complex care, cardiology, palliative care from CHEO, Ste.Justine BMT, dietician, GI, and nursing. Also in the room were discharge planning from CHEO – supposedly to help with organizing home TPN.

The discussion was set around what to do as next steps and trying to plan getting Kate home. The news from Ste.Justine was incredibly somber and difficult to hear. They felt Kate’s GVHD was back, that they could not increase her steroids that they had been weaning because her body was no longer tolerating them. In order to control the GVHD steroids were needed, but the steroids were killing her. It was a unique situation, one they had not encountered before and they were at a loss. What was proposed to us was a choice; we could take Kate home and let her GVHD be managed minimally at a low dose steroid level she might tolerate. The teams could not predict what might happen. Kate might slowly fight the GVHD and recover, the GVHD could take over and cause other complications in other organs besides her gut, she could live weeks or years and would supported by palliative care. No one knew anymore than that. The other option was an experimental procedure involving ablating Kate’s new immune system and letting it ‘reboot’ (so to speak). The theory was that the new immune system received from her brother during the bone marrow transplant procedure was over-active and attacking Kate’s body, specifically her gut, as an invader. If we gave it a reboot, the killer cells would be eradicated and when they regrew would possibly not be as aggressive, thus ‘curing’ the GVHD.

It was a dangerous procedure. One the Ste.Justine had been discussing (unbeknownst to us). Kate would be at high risk for infection, and in her already fragile state there was no guarantee she would survive the procedure. We were given a 50/50 chance. It was extremely difficult process this option given the limited time of our meeting and the need to decide quickly.

Our option was to hope Kate could recover from GVHD on her own, and treat her palliatively with minimal intervention, or go the aggressive route and hope to ‘reboot’ her immune system in hopes that the immune system 2.0 might not have the same GVHD effect.

As we heard this news, tried to process it, Brian and I sat surrounded by her teams, but alone. He in Montreal and I in Ottawa. He with a team of 5-6 physicians and I surrounded by the same. All eyes on us. We were supported and most people were empathetic, but we were so alone in that moment. I watched my husband cry with despair and sadness over videoconference. He had been with Kate all week. He had nothing left. A bomb had been dropped in our lap, and we had no idea how to diffuse it and very little time to think about it.

I spoke up, finding my voice and stating what I had said all week long. “We want Kate home”, I said. “We need to think about this and we need the weekend as a family with Kate at home”, as tears fell down my cheeks.

The room was silent, because you know what? Nothing happens on the fucking weekend. TPN could not be arranged with CCAC. The discharge planning person from CHEO actually said, “we can’t do that over the weekend”. I looked at her incredulous and could not form any words. It was not a new situation with us, this obstinance, but it devastated me. I looked around the room for help, no one had anything to offer.

And then, our incredible Ste.Justine nurse, Karine, whispered in Dr.Duval’s ear that she would make it happen, and despite the head shakes around the table from GI that Kate was not stable enough, he also agreed to ‘make it happen’. Karine came up with a solution of sending Kate home with IV hydration. Over a 48 hour period she would be hydrated with key minerals added in to keep her stable. She would return to Ste.Justine on Monday for TPN, and that would give CCAC time to arrange TPN for home delivery on Tuesday.

I can never thank Karine enough or Dr.Duval enough. No one could have predicted what would happen next, but as things changed over the weekend, Karine had made it possible for Kate to be home. She cared enough about our little girl and our family to do what no one else would.

And so it was agreed, Kate would come home that afternoon, Friday, November 27th. I would drive to Montreal to fetch her and Brian, and we would make our decision at home as a family about what to do next, and return to Montreal on Monday, November 30th with a plan.

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

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

 

by Julie

The Effectiveness of Hallway Conversations

My world with Kate is both small and huge at the same time. Kate doesn’t have many friends, she doesn’t go on regular ‘playdates’ or off to activities on her own – instead she goes to school where she mainly works one on one with adults, she has therapy with myself and adults, she has a respite worker, and she visits the hospital to be poked, prodded, examined, and intervened with. She spends a lot of her life waiting, being touched by others, being pushed in therapy, and waiting while I have dicussions about her with all of these people.

Because of Kate my world is complex and requires quick thinking, advocacy, patience, ability to communicate in many ‘languages’ (medical, therapeutic, educational etc.) – even to learn a new language (American Sign Language).

I take advantage of every opportunity to engage with the adults in her life be they medical case conferences about her, clinic appointments with one of her 15 different specialists, phone conversations with consulting medical specialists from around the world, scheduled therapy sessions, scheduled educational meetings (with teachers, EAs, LSTs, principal, Board representatives, placement and review committees), discussions about community therapeutic care, or even conversations with our local community centre to place her in a basic preschool swim program. Nothing in Kate’s life follows typical procedures or processes. Nothing is easy.

But sometimes what I find most advantageous are the unanticipated and unplanned ‘hallway meetings’.

Yesterday, I had to walk the length of CHEO from Kate’s afternoon auditory verbal therapy session to another wing of the hospital to sign paperwork from metabolics/genetics, and then head to the cafeteria for a casual meeting with CHEO public relations (more on the purpose of that meeting next week). In the course of that short walk, I met Dr.P (Kate’s metabolic/genetics physician) and we had a brief chat about Kate, how she is doing, recent symptoms, our planned meeting next week – then I ran into one of Kate’s formal social workers at CHEO from the neurology department (we are now with palliative care social work at Rogers House), we talked about Kate, how much she has grown, her diagnosis, how she’s feeling etc.  Finally, I reached my first destination and signed the required paperwork, and went to the cafeteria for my meeting. As we sat down, Linda the cafeteria lady came over to say hello – Linda is a kitchen worker at CHEO who has a Deaf daughter and she knows ASL. She has struck up a little friendship with Kate and always comes over to say hello, asks how Kate is doing etc. I finished my meeting and made a quick errand up to the clinic area of  CHEO where I ran into 2 of my favorite phlebotomists – these ladies can get blood like nobody’s business – they asked how Kate was doing and asked if they would be seeing her soon. When I arrived at my clinic destination, I ran into Dr.Major, Kate’s complex care pediatrician who we are overdue to have a clinic appointment with. She asked how Kate was doing, recent symptoms, how did our TO visit go, asked me to follow up about scheduling a clinic visit with her etc.

Without going on…I think you get the picture. Hallway conversations as spontaneous as they are, can be very effective.

– I got to touch base with Kate’s metabolic/genetic doctor about how Kate was doing (he hadn’t seen her in several months). We discussed the current research going into Kate’s disease. We touched base about a meeting he would be having about Kate with her doctors at Sick Kids. And we planned to have a clinic visit.

– I got to touch base with Kate’s complex care physician at CHEO, briefly mention some concerns about Kate and planned to make an appointment as soon as possible with her.

Effective and efficient.

Today, I had a very similar experience at Kate’s school. As they are getting used to Kate, and we are getting used to them getting used to Kate, there have a been a few hiccups along the way. The latest hiccup has caused a lot of stress in this house for the past 72 hours. I didn’t have time to meet today, but I let the principal know as I entered the school that I would like to meet. I walked Kate to class and ran into the principal in the hallway – and there we had an unplanned ‘hallway meeting’, and I think we got much more done than any other scheduled meeting I have had at Kate’s school. We were efficient (because it was unplanned and we both had places to be), it was effective (a credit to both of us), and because it was impromptu (not to say I hadn’t been giving things a lot of thought) the filters were off and I feel like we were very upfront with one another. We agreed to follow up ‘in clinic’ (i.e. her office with the other educational professionals involved with Kate).

I left feeling better. A hallway conversation can do that.

 

Julie