If I were to pin point the exact moment in time that Ivy’s anxiety levels spilled over and out of her cup of reserve
it would be when the PICC line got stuck in her infected and inflamed vein
and they tried to pull it out.
Everything was hard after that
and in fact,
with all of the illness surrounding those procedures last year,
followed quickly by the addition of three subcutaneous needles almost daily
it makes sense that that period in Ivy’s life would set off extreme fear issues for every future medical event.
When questioned lately about that time of her life she said,
in a totally non dramatic, practical Ivy kind of way;
“I thought I was going to die.”
It’s hard to hear her say it
because it seems unnatural for a seven year old to feel her mortality
and because I thought it too at some point during that time -
although I never spoke it to her.
Thursday will be the last of her infusions under a general anaesthetic.
Four pain free, stress free weeks
where the doctors have seemingly and seamlessly worked as one amazing team -
they may do that at other times but never so obviously as they have these last few months.
The lovely pain doctor at the helm of this new communicating giant
has made sure I know most of everything discussed
and I couldn’t be more appreciative.
There have been so many good and positive things that have happened since she became a part of Ivy’s support network.
The other doctors seem to care more,
Last week, the new doctor (who really isn’t new anymore)
and the kind surgeon
came to review Ivy while she was having her stitches removed.
Expecting the worst, I imagine,
as the last time she had to have that procedure done
she became so distressed that she almost took the eye of the Fellow trying to take them out.
She needed sedation then
and for every procedure following it too
Ivy had made the decision herself to try without Midazolam this time (a very big step for her)
and was in the midst of having the first stitch removed when they arrived.
We were both a little distressed by then.
Instead of waiting outside (which is what commonly happens)
the new doctor held the small girl’s hand
and stroked her hair
and breathed with her (and I)
while the kind surgeon was Ivy’s cheer team -
“good girl, Ivy. You can do it.
Good girl. You are amazing”.
I could have cried.
This is the way I imagined all good doctors to be.
This basic human instinct of caring for another person
and because of that,
and possibly six weeks of anti anxiety medication and therapy,
the girl was able to conquer her fear -
all stitches removed without sedation.
they celebrated openly and as happily as I did.
They made a big deal of it
and Ivy felt that
and in turn felt proud of herself.
It was a break through.
We have been talking a lot, this week -
the girl and I,
holding the small butterfly needle (which she has named ‘noodle’)
and ‘seeing it for what it is’,
which is our new way of breaking down scary things.
If you hold it just right,
Ivy tells me,
it looks like an abstract sausage dog of sorts
and the nose
is just a metal thing that stings only for a minute.
She knows that the ‘numbing medicine’ (lignocaine)
and ‘the spreader’ (hyalase)
stops the infusion from hurting her as it pushes its way under the subcutaneous layer
and we have been practicing her (our) breathing skills again -
something that she has not been open to since early last year.
I can only hope that all of this is enough
and that the next phase of this desensitising program goes as smoothly as it can.
My expectations are mixed in all honesty and I’m pretty sure hers are too
but it’s time to try.
It’s time to step into the great unknown
and give Ivy the chance to be in control, once more.
What awesome behaviour from Ivy’s doctors and what a brave little girl she is. You’re both doing awesome and I can’t wait to read how Ivy continues to take control of her condition and treatment. Big hugs….
Beautiful. Anxiety is such a wicked beast. I’m glad to see she can tame it so soon!
That is amazing. I am so glad it seems to be working. Tell Ivy from me that she is an absolute super star and the Starlight captains better watch out or she will be superceding them with her amazing superpowers! I love the fact that the butterfly needle apparently looks like a sausage dog. I now want to go nick one from the hospital and try to make it INTO a sausage dog.
As someone studying nursing (and I am looking towards paediatric nursing as I have a little girl with a heart condition) we are taught patient centered care at every opportunity. It is very heart warming to see Drs making that effort when they are so used to seeing the condition not the child. I hope things continue to improve for you and your sweet Ivy.
No words of wisdom – just thank you for writing this so beautifully that we have some understanding. And, of course, sending every good wish.
Praying for you Ivy. I am going through much the same as you — but I am 61. You are so brave little angel!
I am crossing everything that it’s helped and that it works. x
Oh, this is good to hear. Thank God for the pain doctor and the change she’s been able to bring about. Hoping that it continues this way.
My heart goes out to you every time I read one of your posts, you writing s so beautiful and honest.
From reading about Ivy’s anxiety and her reasoning for this in the beginning and your struggles with anxiety and depression.
I feel it deeply and “get it” as I struggle with my own sons medical issues and my own battles with depression and lack of support.
You must be an amazing Mum to carry all that you do. Wishing you and your family all the best.
With the awesome change in attitude from all in Ivy’s medical team, I am cautiously optomistic that both Ivy and you will take the next step forward in your stride and the outcome will be a positive one.
This respite from the previous stress and anxiety you both shared has lessened the fear for Ivy so that she can reassess and realise how much easier it will be to be in control and how relieved and so much more relaxed you will be about the whole process, too.
Amazing what a difference that cry for help has made for ALL concerned and, without doubt, will continue now to make Ivy’s journey as easy as it can possibly be. xoxo
With all that Ivy conquers, she will conquer this fear too! xx
hello, I have been lurking again, LOL. Haven’t commented in a very long while, but have been silently sending hugs to you all. I wanted to thank you for your posts on Noah’s tinted glasses. Testing is not done in schools here in canada, in fact most people don’t know anything about it. I’ve just had my 2 children tested and their tinted glasses are on their way. Our lives are about to change. The 9 year old boy is so light sensitive, it was amazing to watch him relax as he read with the glasses on. And the 16 year old girl can now read without headaches and confusion. Thank you.
Oh Shygirl! Such good news. I’m so very happy to read this.
what a relief to have such a good team of doctors this time round.
They’ve made a huge difference and I think Ivy will progress well now.
Crossing all my fingers anyway.
Very inspiring!! Will be thinking of you, as always.
I have tears now.
Hope the next steps go well, and that this desensitising period stays with her for a long time
Yeah Ivy Way to go Tiff Go Team Ivy Team work at last
Team Ivy, respite and anti-anxiety meds – reading this post has put a smile on my face. Am hopeful for you all that things will continue down this way.
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