Tag / complex 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

Running For A Reason #fightlikeagirl

A few weeks ago I was asked to interview for a local newspaper. The piece was focussed around International Women’s Day #IWD2016. It was an honour to be asked. It was a difficult interview to do. The author was limited to a 650+ word count and I wasn’t sure how she would tell ‘my story’ in that space. I think Bhavana (Gopinath) did a good job of condensing our 2 hour conversation. She describes me as a mother, advocate, and athlete. I think those three nouns describe me well. Here is what I might add to the article:

Julie is in an incredible amount of pain and lives most days moment to moment. She can’t seem to process the tragic loss of Kate. She feels the shadow of her little girl with her at every turn. Every morning she opens Kate’s bedroom door and says ‘hello’. Every night she closes it again and blows her a kiss  ‘goodnight’. Kate is there when Julie sleeps, and she is the first thing she thinks of when she wakes.

Julie finds peace and empowerment in supporting other parents to navigate and survive the complexity and frustration of a medical system, and community care that are not structured to support medically complex and fragile children like Kate. She wants to be a voice for change, and as she gets stronger she will continue to seek out the right opportunities to do that. Opportunities that are real, and where people within the system are dedicated to real change. 

Julie doesn’t want Kate’s death to be simply accepted. She would like to see learning happen, and the opportunity for growth of knowledge and skill in assessing, managing, and treating medically complex children.  She knows Kate’s death comes with a heavy lesson, and that one day there will be a better treatment for SIFD and mitochondrial disease, possibly even a cure. 

Julie runs because that is where she feels strong – and where she also feels pain. Her sweat conceals her tears. The burning in her lungs and in her legs reminds her of what Kate had to endure and her strength. She listens to music that inspired her all along Kate’s journey. Her running partners remind her of the people who have rallied around her family, and that she is not alone. Running in solitude gives her peace and the opportunity to live a few of the lessons Kate taught her – strength, endurance, living her best life.

 

On May 28th, 6 weeks after I run the 120th edition of the Boston Marathon , I will run the 42.2 kilometres of the Ottawa Marathon as part of Team MitoCanada.

This is one of my steps in building Kate’s legacy.

Team MitoCanada Ottawa will run in honour of Kate this year. Our trademark “Team MITO” shirts will be pink, Kate’s favourite colour. Over 100+ runners will participate in the 2k, 5k, 10k, half-marathon and marathon events to raise awareness and money for mitochondrial disease. All money raised at #runOttawa2016 will be presented on behalf of MitoCanada to the Children’s Hospital of Eastern Ontario (CHEO) Research Institute as they pursue research into SIFD and mitochondrial disease.

If you would like to participate as a runner, and help us fundraise toward our goal of $42,200, we would love to have you.

To donate to Team MitoCanada Ottawa Race Weekend, please visit my #runOttawa2016 fundraising page.

#fightlikeagirl

 

Running around the 5k race course at Ottawa Race weekend 2014.

Running around the 5k race course at Ottawa Race weekend 2014.

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Team Drury – Team MitoCanada Ottawa Race Weekend 2014

 

Julie

by Julie

“How To Be A Good Guest”

NOTE: We have been home for just over 2 weeks from a close to 7 month hospitalization. This blog post has been sitting in my ‘draft’ since late August. It’s interesting now to read it and reflect on our experience of such a short time ago. I want to say that our family is very grateful to the excellent medical professionals who have taken care of Kate. This is unedited and unrevised. A raw reflection of hospital living.

 

Living in the hospital with your sick child is not something I would wish on my worst enemy.  It is a sad and lonely existence.  It is stressful, exhausting and scary.

You lose all control over your life in hospital: personal space, likes/dislikes, routine, and decision making. You are reminded almost daily that you are not in control, that your autonomy as a parent is no longer. That discussions and decisions about your child, you, and your family will often happen without your presence or input.

And you have no choice. Your child is sick. You need to live this life, sleeping on a small cot, being woken throughout the night because of alarms or lights, physically and emotionally exhausted, separated from home – family and friends, eating what and when you can, limited from going outside or fresh air, living with incredible stress among strangers, all while dealing with incredible stress and heartache.

And you always need to remember to be a gracious guest. Smile. Say Thank You (a lot). Guard your emotions. Accommodate any interruptions of medical staff to your room. Repeat your child’s story endlessly and readily. Expect to meet an endless stream of medical personnel. Try to greet everyone by their title – despite the fact that for months on end they will simply call you ‘mom’. Expect no routine. Be agreeable with waiting all day for 5 minutes with a doctor. And be vigilant about keeping you child safe.

 

Be. A. Gracious. Guest. 

 

Check your emotions at the door – AT ALL TIMES. An almost impossible task given the circumstances you are living, but a clear expectation by those whose ‘house’ you are visiting.

If you are lucky, you’ll work with a medical team who are compassionate, patient, communicative, flexible and transparent. Doctors and nurses who understand your journey and the stress that comes along with it. Professionals who aren’t jaded by working with endless little patients and endless upset and frustrated parents.

Let me warn you. This type of environment and medical team cannot be an expectation. We have been lucky for the most part.

Hospital life is a constant delicate balance about living out a working relationship that includes respect and civility, but in an environment that is created and controlled solely by the medical professionals, and for the parent, under situations of extreme personal stress.

 

House Guest Rules:

  1.  Be Clear About How Long You Will Stay

I don’t want to be here. I would prefer not to be ‘visiting’. I’m sorry, but we have no idea how long we will be staying. I am not in control.

2. No Surprises Please

After living 8 years with a child who suffers from an ultra-rare disease, ‘no surprises’ has definitely been taken off the table. We will surprise you daily. 

3. Choose The Perfect Gift

I will bring you coffee, tea, Timbits, a fruit basket, cookies for the night shift. We are grateful for all that you do for us.

4. House Rules Rules

We will do our best to adjust to your ‘rules’, but we would appreciate some flexibility and compassion about the fact that we are reluctant guests and that some ‘rules’  are not to the benefit of our child. But again, I understand…I am not in control

5. Be Appropriate

I assure you, I am a calm, rationale and appropriate human being 99.9% of the time. I hope you understand that this is an incredibly challenging and difficult time for our family, and I am doing my best to be appropriate. If I am not at all times, I hope you are empathetic and able to be there to support me.

6. Help Out

I will do everything I can to help out. Changing beds, managing my child, helping with meds, holding her down for procedures, interpreting for you and for her etc.

7. Entertain Yourself

Done. An endless supply of stickers, play dough, colouring, puzzles, dolls, toys, crafts to play with. I’ve updated my Netflix subscription as well, and found a few magazines and books to flip through.

8. BYO

If only! An occasional glass of shiraz in a beautiful wine glass shared with a good friend would be so amazing right now.

9. Leave No Trace

Keep our room neat and tidy. Check. We’ll likely leave a trace with you though. Kate is just too adorable to forget. 

10. Give Thanks

We are both grateful and we say thank you every single day.

 

As a patient-mom, I have lived more than my fair share of out-patient, in-patient, short and long term hospitalizations. I understand the medical system and I know how to navigate it – most of the time (it can be difficult and confusing still).

I am a good person, a good mom, and excellent patient advocate. My goal is to keep my daughter safe and well cared for, and I have clear expectations about how that is to be done. It doesn’t always fit with the ‘house rules’ of the medical professional I am working with. So I go back to my “etiquette” and do my best to get done what needs to be done in a collaborative and professional manner. Often times I am relied upon by these same professionals to help them understand my daughter better because of the complexity of her condition. But I am a mom. And I get tired and emotional and scared – and I am not always going to have the patience to say everything in my nice voice. I am not always the perfect “guest”, but I think I come pretty darn close. It comes with working within the imperfect environment of a hospital, and I think needs to be appreciated and understood by everyone involved in the care of a sick child.

 

Julie

 

 

 

 

by Julie

The Art of Imperfect Decision Making

A Recipe for Making Decisions

How to make an impossible decision in 7 easy steps 

 

Ingredients:

Information and Research

Gathering of knowledge from ‘the experts and specialists’

Analysis

Questions

Discussion

Weighing of Opinion

Pros/Cons

Evaluation of information

Decisiveness

Gut Instinct

Support

 

Method:

1. Gather as much information as you can through research. Mix this with knowledge and expertise from many sources (e.g. experts, specialists, others who have made a similar decision), placing an emphasis on those who are leaders in the area/topic on which you are trying to make a decision. Be prepared to search this information out internationally.

2. Mix all of this information, knowledge and expertise together and conduct an analysis by comparing and contrasting everything you now know. Where is the information similar, where is it contradictory, what are the gaps in your information, what other sources of information and expertise might be available, and find out what you do not know that you need to know. After this step in the process you can move to formulating your questions and identifying what more you need to know or who else you might need to speak to about your decision.

3. Your next step will require several discussions about the decision you are trying to make. The structure of these discussions will vary, and your recipe for decision making could include: 1 to 1 discussion, informal conversations with trusted friends/family/professionals, formal multi-disciplinary team discussions, discussions with specialists in the field. You might conduct your discussions over the phone, face to face, or over video-conferencing. You may also need to consider travel to other destinations in order to conduct your discussion in person. Consider the following when organizing and preparing for discussions related to your decision-making:

– Bring a friend who can listen and take notes. It is difficult to take all the information in when you are in a very important discussion/conversation. Having another person to assist in the task of listening and note taking can be very helpful to your decision-making process

– Ask if you can tape record the conversation. This can be helpful so that you can hear the conversation again.

– Prepare in advance. Write down a list of questions and concerns related to your decision and send them to the meeting participants in advance so that they are prepared to address them. (Sometimes sharing this list with knowledgeable friends or professionals in advance can help you to refine your list of questions).

– Bring a notebook and paper.

– Ask another person (social worker, nurse, trusted professional) to facilitate the meeting so that you can focus on the discussion and not on managing the meeting.

4. Analysis and Weighing of Opinion.

You will need time after the gathering of information and knowledge, analysis and discussion to weigh the information you have been provided with. A helpful tool  in this step of the Decision Making Recipe is to develop a Pros vs. Cons list and then to add a value or weight to each of the Pros and Cons. An example of this can be found here, Ottawa Family Decision Guide.

It might also be helpful in this step of the process to engage a Decision Making Facilitator or Decision Making Services, a third party who guide you through this process. This is particularly important to ensure there is open communication and that all parties of the Decision Making Recipe are working together and communicating well. In intense medical decision-making, this can sometimes get lost – this is where facilitated sessions can help.

Professionals can help guide you through the weighing of opinions and information, and can help identify where your priorities lie with respect to the decision you are trying to make.

5.  You may have to repeat Steps 1-4 more than once in order to feel decisive about your decision.  It is important to know that important decisions cannot be rushed, and you should feel supported in taking your time to make a decision.

6. Gut Instinct.

Your gut instinct needs to factor into to your decision-making. If it feels wrong, it probably is. In my experience, my maternal instinct has been referred to by our medical team and decision-making team, and I have been told to listen to it and factor it into my decision-making.

But what if your gut instinct isn’t clear? What if it isn’t saying anything at all?

I call this the vortex of decision-making. Circling and circling because the information, expertise, knowledge that informs the decision you are trying to make is imperfect and incomplete. How do you make a decision with imperfect and incomplete information? You make the best decision you can with the information you have.

The vortex of decision-making, also known as “indecisiveness” can be debilitating. It can eat away at your soul. It leads to stress, anxiety, possibly even depression and should be avoided at all costs. You avoid it by asking more questions, asking repeated questions, clarifying as much as possible and eventually coming to a decision, even if you are making that decision with imperfect information. A recommendation for your Decision Making Recipe is to set a timeline for making your decision (if one has not already been set for you). Living with an ongoing decision is very limiting and difficult. Once it is made you will find yourself ‘unstuck’ and able to move forward.  The decision can be changed, but at some point you will have to commit one way or another.

7. Once you have made your decision, sit with it. Let it absorb, start to live it and get as comfortable with it as you can. Shift your mind-set toward the decision you have made. Then push the ‘Send’ button and let the professionals know the decision has been made.

8. Once you’ve made your decision you will slowly need to start sharing it. Make it clear to others that you expect to be supported in your decision. Those that are not providing support need to play a more minor role in your life. They cannot contribute to the vortex of indecisiveness. They need to be ‘on-board’. Finding those people and giving the important role of supporting your decision is a last and most important step in this process.

 

Other Things to Consider:

– Others cannot and will not make the decision for you, but you can still directly ask your trusted team “What would you do?”

– Many decisions are imperfect because there is not enough information available or there is no obvious choice between the decision(s).

– Decisions can be changed/reversed to a certain point. 

– You should never feel pressured about making a decision.

– Include others in supporting you once your decision is made.

 

Julie

Note: Our family has been going through the process of a very difficult medical decision for Kate for the past 2 years. The Decision Making Recipe is based on our experience. We have made our decision  and it is imperfect and lacks all the information we need, but we are moving forward. 

I wish you the best of luck with yours. 

by Julie

Change

In the past few months I’ve entered new territory in the ever-changing journey of caring for Kate.  As her mitochondrial disease evolves, change in her condition is expected and some say inevitable. And the change is not positive, it is thought to be degenerative in a progressive way. Those are hard words for a mom to hear. They are even harder to absorb and truly understand. What makes the words more tangible is when the change involves change in Kate’s care and her routine, and that is what we have experienced in the last few months. It is not change that you would typically expect with a growing and developing child, the change that comes with parenting a ‘typical’ kid. It is the change you worry about, hope doesn’t happen, wish you didn’t have to cope with, co-ordinate or assimilate into your life as a caregiver, ‘nurse’, and complex care coordinator.

Kate has weighed about 15kg since January 2012, give or take. She hasn’t grown much in height either. She is tiny, and by measurable medical standards she is below the 5th percentile in growth – if she even makes it onto the growth charts. The fact that Kate is tiny and undersized for her age is not lost on anyone, but it has not been the front and centre medical concern with so many other competing and more pressing issues to address. Kids can be small and ‘slip off’ the growth charts, but when your child is living with a chronic disease and suffers from frequent acute illness, weight/height/size and growth do matter.  This past spring, with constant ups and downs with her mitochondrial disease, her ‘failure to thrive’ became more of a point of discussion, prompted by me asking the team ‘what can we do’. Those four words caused a flurry of excitement and activity.  Kate’s complex care team jumped at the opportunity to engage me in considering this intervention for Kate. Her medical team had discussed with us options for enteral feeding for Kate before – but neither Brian and I were comfortable taking that next steps, and I now realize Kate’s medical team was waiting for us to be ready (and hoping we would be before they needed to strongly recommend that direction). Before we could step back from the conversation, a nasal-gastric (NG) tube was planned, equipment was ordered, and training was organized for us. I didn’t have time to backtrack of second guess – I think they’ve learned to act fast with me.  So here we are now, 4 months later, and the use of the NG has become part of our daily routine (3x / day). It has become so second nature that we can do it at the park, we travel with it, we teach others to do it (as needed), even Kate gets involved in flushing her NG tube and helping with the delivery of medications (very messy).

And the result?  Kate weighed in at 16.2 kg this week. The heaviest she has ever been. She has also gained in height. She is growing.

Happy Mom Face!

 

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On Monday, another change. For the first time ever, I poked Kate.

Unhappy Mom Face.

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A child like Kate endures at least 100 pokes a year (an estimate by our complex care doctor). Nurses, phlebotomists, veinous access team, ED staff – all take stabs at her. I often marvel at that particular job in the hospital. Of all the paediatric medical jobs there are, poking kids all day long – day after day – has got to be the least rewarding. Who goes to school to study that? Really? (I have the upmost respect for them, and I adore the ‘go to’ members of this team who are the ‘vein whisperers’ and can get that IV in on the first poke). When Kate sees the ‘blood cart’ she knows exactly what is going to happen, and because of the difficult access to her veins as a result of too many pokes over so many years, and the resulting scaring, she can’t use the ‘freeze creams/sprays’ that are offered and can help distract from the whole process and minimize the pain.

Kate has needed to start on immunogloblulin treatments because her compromised immune system is slowly deteriorating and is in need of support (insert another sad mom face).  Typically immunogloblulins (IG) are given via IV (intravenous) once a month in hospital. Unfortunately for Kate, the amount of IG that must be given intravenously was too much for her system to handle and caused an inflammatory cascade, or a triggering of one of her ‘episodes’. The option the Infectious Disease team (who take care of this aspect of her medical management) turned to was the recent development of sub-cutaneous delivery of IG (SQIG).  SQIG is a weekly infusion of IG that can be done at home – after the parent (mom/me) knows what the hell they are doing and get over their ‘fear factor’ of needles. Seriously – I am terrified of needles, but surprisingly I seem ok giving them to someone else. Phew.

So this is what we have landed on for Kate in the latest chapter of life with this disease. An immune system that is failing. The need for a lifetime, weekly, blood product to keep her going – to keep SIFD at bay. And so this new level of caring for Kate, where I am now injecting her weekly with immunogloblulin. I am the one doing the poking.

Fortunately, when I poke Kate, the injection is SQ (sub cutaneous) – just under the skin – and I can freeze her. This has made all the difference and Kate is very co-operative – even helpful (too helpful) – with the process. Still the task feels daunting and I still have 2 more infusion sessions to go with our nurse guiding me before I am sent home to do it on my own. I hate the learning curve. I hate feeling worried that I will do something wrong and hurt her. I know the confidence will come, and that at some point I’ll be quite cavalier about the entire thing – amazing friends and family with my needle wielding skill. But right now I feel overwhelmed, a little intimidated and a little scared. I don’t want this. It makes me sad. I don’t want this change, this evolution in her care in her disease. I just want to be her mom and go to the park.  I want to find that ‘normal’ place, that consistent place where life is just a little more predictable for us and for Kate. Everything I am being told about this disease is that this is not possible, that the unpredictability is what we can continue to expect and have to manage.

I wonder what is next?

 

Julie