Working with the school to prepare for palliative.

Each day we are preparing for ‘the event’. Now that the word palliative has been associated with the medical needs of Abbey, I need to write and chat about some horrid topics.

Today I had to write an email for her teachers. Here is the essence of the letter.

“Hi Ladies
Just had ‘that’ phone call with school nurse. Icky!

We chatted about EQ policy and our wishes for Abbey should ‘the event’ happen at school. School nurse suggested we have a chat with Principal about ‘the event’, but I would really love it if one of you can be there please? Or both for such a lovely chat. Ha! It is so important you are involved in every step of this as you will be at the forefront. We are keeping those who are directly involved with Abbey close.

So I will be chatting to Ambulance Organisation first about their procedures and requirements, then wait for the letter to come through from Dr re palliative/resuscitations stuff and finally for James and I to process all of this before coming in to chat to Principal and you. Ick.

At the moment I would want to know:
(a big long series of stuff about how EQ policies and procedures intersect with our wishes and Abbeys needs)

For all moments in this journey we are looking for peace. Peace for Abbey. Peace for us. Peace for those involved with her care.

Tennille”

No photo: Please take a moment and hug those you love.

The Marijuana Trials Update

It has begun and we now wait and watch. I thought I would share how it is proceeding and what we are watching for in case Abbey cannot continue.

The drug is administer via an oil solution which is put down the feed tube into the Mickey Peg. As the volume is so small and the drug is dispersed in the oil, we must ensure it all goes down the tube. We have had to alter our feeding routine to accomodate this.

Previously we would give Abbey her meds whenever throughout the feed. Making it easier if we forgot to make them before feeding her. Now we must ensure the water dissolved meds are given first, then the oil, then the feed. Her feed has some oil based elements to it which will assist in moving the marijuana oil through the tube. The tubes look empty at the end of a feed, so we are confident all of the good stuff is making it to her tummy.

The dose of oil will increase on a weekly basis. It will be each Friday night that the next dose will increase. This means we can watch her closely each weekend.

As there is a contraindication with clobazam, its the excessive drowsiness and subsequent potential shallow breathing we will be watching for. If we see any of this, then we will need to contact the doctor to decrease the dose of clobazam.

The weekly increase of the marijuana oil is the quickest we have time we have altered medications. It will be over a 6 week period. If we make it to the end, then its possible she will be able to take the new drug.

The only other side affects is increase liver function, and Abbeys is slightly elevated at the moment. At the 4th week she will have another blood test to assess.

We are also required to record the seizures, which is an interesting exercise as she has so many and different kinds. Im not prepared to note every single one according to time and presentation. So we are accumulating them into groups of Big Seizures, Jerks, Vacants and Anything Usual.

If it works, we know that Abbeys development will improve. We have seen it before. I saw this video from a horse riding lesson her teacher took, and noted how straight and balanced she is sitting. Im letting myself dream a little bit about what the new drug may allow her to achieve.

Palliative: the word we dont want to hear.

Palliative.

Its a word that has always been in the background and followed us around from day one. Its a word that we wish not to hear.

Palliative.

The word popped up at a Paediatrician appointment last week for Abbey. Her doctors have started talking about the process.

Abbeys doctors’ want to start the paperwork for palliative care. Abbey is not terminal. It just does not make sense, but we know her life will be shorter. Her doctors know this. We know this.

We won’t look into the future often. We know it will change dramatically one day. I dont want to start the process.

But… we must.

For a week I’ve been going through another kind of grief. A sadness that this step makes it official that my girl won’t be with me forever. That I will outlive her. Paperwork always makes things official. I like thinking I can spend all my time curled up in bed with her cuddling.

Why palliative care?

Abbey is eligible for this service as her life is shorter and its provided for children who will not make it to adulthood.

Starting this process will help in the following ways:
– as Abbey gets older, there is less chance that we will loose services from the child to the adult sector at 16 years. Its just another foothold in the bureaucratic system that is disability services.
– if she does pass away at home, then it will mean the police will not need to be involved, making this event a bit easier on all concerned.
– we can hook into counselling and services that can assist us with this transition.

This has brought into perspective where we are heading next with our girl. It all makes sense, but honestly, if feels icky and makes me sad.

Talking about it does not help. Writing about it does not help. I dont think I want to get use to this next stage.

All we can do, is carry on. Life carries on. Abbey needs cuddles and love. This we can provide in abundance.

Tennille

It All Happens At Once.

Any special needs family will agree that trying to accomplish anything more than just caring for your children, can be futile. However if we choose to take on a project, with extensive planning around the needs of the children, it will always go off kilter.

After 18 months of planning we have started the front wheelchair deck out front. And it has not gone to plan, who would have guessed?!

On the morning of digging and moving dirt a week ago, the contractor cancelled 20 minutes before starting. James scrambled to find someone else, with no success. He has a week off work to start the foundations, it needs to happen.

Much to his delight, James hired a small excavator to move the dirt and break rock. All week he has been a ‘real’ tradie.

As you know we have also started the marijuana trials, which have been weighing heavily on our hearts and minds.

Today, the seizures are the same. We are onto day 2. Abbey is quite cranky and sleepy which we think is due to the cold and the continuous snotty nose.

We are also watching Abbey closely as there is a contraindication with the drug, clobazam she is taking with the marijuana oil. It can cause excessive drowsiness, leading to shallow breathing. It is possible we will need to decrease clobazam to keep going with the oil.

And to add to this, her liver enzymes test came back high. She will be tested again in a month to ensure no upward movement. If it increases, we may need to stop the trials. In this time I will be finding out why and how to prevent.

Today is the last day of James holidays. The big machine has come in. The original contractor has kindly donated his time to do the final beautification.

Palliative: Heavy shadow that are hard to express into words

The addition of the word, palliative, to our day to day vocabulary has shifted our world. There are new feelings … I thought it was not possible to experience such depth or range of feeling associated with one word, especially at this stage of our journey with Abbey.

The feelings are a heavy shadow that are hard to express into words. There is no way to express these feelings that makes sense. I dont have the desire to cry, be angry, scream or cower.

The word has formally put a finality to this journey with Abbey. But there is no final date and no idea what comes next. All the word does, is tell us we are on the final path.

I have tried using it in day to day conversation to become use to it. I have tried writing about it, but for the past 2 weeks have been stumped as to what to write.

In writing this update there are overwhelming feelings of sadness and despair, but these are equally shared with feelings of vitality, stubbornness and abundant love for the life this girl deserves.

If anything, the word, has firmed my desire not to waste time on trivial stuff, irritations or situations. These are in abundance in day to day life, from someone not understanding your position and it causing angst, to the delivery truck being late or even tackling the NDIS process. None of this is within my control. Our next stage with Abbey, is out of my control.

Where to now? I fight harder for what we need, we want and would love to achieve. I focus on moments of connection and love and not hide. Hiding is so much easier though.

I hope that friends and family will understand if Im late in replying, not remembering the important days or getting caught up in the whirlwind that is Abbey and forgetting a coffee date. I hope they know that when they reach out or check in, that it pulls me out of the little sad hole that can sometimes begin.

Its getting harder to reach out to the world on this new path. It takes more energy and emotion. It also takes more time as we dont know what is next, so there is no preparation.

The word has also given me a new sense of patience with the world. Patience with myself, patience for others in hard situations and patience for those grieving for a loss.

Its written. I dont know how to end this. Nothing has changed in writing it, but its out there now. Maybe I can move onto the next thing? Whatever that is!

Photo: We have altered our evening schedule to all have dinner together as often as possible. Abbey tends to lay down when at the table, as its just the right height.

The Marijuana Trials Begin

The day started at 5am with a tiny burst of excitement. Then we had to drag ourselves out of bed on a 4 degree morning. No one was happy, but that little burst sustained us until we started the drive.

It was then the thought of a warm coffee at the other end, that sustained us through the 1 hour drive.

Arrival at the hospital, drop off medicine scripts to pick up later and organisation of some of the disposable equipment we need to feed Abbey.

Up to the neuro. 15 min chat, that was it. Short and sweet.

Back down to put in the marijuana script.

Up to change Abbey and make her comfortable.

Down to coffee for the wait for meds.

We made it out the front door and a phone call to see the pharmacist.

Back up to pharmacy. Chat to the Connected Care Pharmacist and then the Marijuana pharmacist.

Down to get that cuppa and maybe some lunch now as we wait for other meds.

Walk out front door and an SMS saying the meds are ready.

We are hungry. We are tired. We need food.

We go eat food.

Back up to collect meds.

Down to car park.

Leave for trip home. TRAFFIC!!!!

Finally home after 6 hours since we left.

We have the meds, the equipment, the instructions, the contraindications.

We start tonight. And we watch our girl.

More info to come. I’m stuffed!

We all deserve peace

A special needs parents journey is never smooth. No matter the disease, illness or disability, it forever follows an unknown journey. We can only provide the love, support and advocacy for our child to make the journey for them that is peaceful and smooth. As a consequence we, the parents or carers, take on the burden, the sacrifice and the sadness that comes. And we do it because we know that life is beautiful and we want our child to experience that beauty.

Today was the one of the hardest day in our journey as Abbey’s parents. Today we had to advise our wishes for resuscitation for end of life.

It’s a horrible experience. We knew it was coming. It’s important to make it easier.

She is our daughter, she deserves peace at all stages of life. And we all – all who share in her life journey – deserve a peaceful end, whenever that may be.

Where is the wine when you need it?

Some days in a carers life are huge because you receive news you were not expecting, or some thing happens that shifts plans or dynamics. Or if you are really lucky you are ‘blessed’ with both in one day.

Today was a Hugely Bless-ful Day.

It was going to be a busy day anyway.

I went grocery shopping, which I have not done for 4 months. Still not an exciting event!
Some blood tests to check up on my health.
Coffee with my special friends who are just like me, coping with the crazy.
We have a new oven and range hood that James is installing.
James has finished the front wheelchair ramp. (Photo soon).
Plus general mummy stuff.

Then the news… one of our favourite carers will be moving on. For special needs parents this is the equivalent to a punch in the guts. It shifts your world. But it’s bittersweet as we have seen many carers going onto bigger and better careers and the joy they have brung to our lives.

Then the event … Abbey has her first big seizure while awake AND walking with assistance. Watching closer now as it’s a little dangerous for her and carer to catch Abbey. We need to think about safety when assisting her to walk, while encouraging her towards independence.

Sooooo it’s been a very huge day.

Sheesh, where is the wine?!

Photo: there are a few holes in the kitchen. I have an empty wine glass. I have looked high and low. Might need to go the whiskey!