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Turn around.

It’s funny how much things can turn around and change in a week.

Today marked the first day that Ivy has had her infusion pain and anxiety free -

and

under a general anaesthetic.

As it turned out – it was pretty amazing.

Everyone from the nurses on the ward

to the staff in theatre

to the gentle anaesthetist who looked after Ivy with such care

to the kind surgeon, who assured me that I had made the right decision and that no harm would come to my girl while she was on his watch,

were kind and supportive.

I could not have asked for better

and the infusion itself

was such a non event -

after so many months of fighting

that I was able to just sit

and breathe

and stroke her little hand.

It was the least stressful needle I have put her through.

Ever.

Last week I never thought that I would consent to such extreme measures

but after we attempted everything again,

it was clear

that nothing was ever going to be enough

unless we gave the girl a true break.

I need to be able to give Ivy the best chance of overcoming this anxiety.

After the great group doctor edict of 2013

the lovely pain doctor  verified that she thought a hastened elevation of treatment would be in Ivy’s best interests

and so we tried lignocaine (local anaesthetic)

and hyalase (a medication that disperses the infusion further under the subcutaneous tissue)

and sodium chloride (which neutralises the ph of all of the above),

along with all of the other things we’d already added in.

The infusion itself was a hundred times better,

with less pain

and less of Ivy gripping the sides of the lounge until her knuckles were white

but the anxiety was worse than ever before.

What was already an hour long panic  ’ritual’ that we have been refining over the last six months

was extended by another twenty minutes at least

and that was only  at the point of positioning the girl,

preparing the site

and placing the needle.

There was a whole lot of stuff that went on before it

and so the decision was made.

On Tuesday when everything was finalised and we had a time locked in

I suddenly faltered

because what I was about to do was extreme

and it was a complicated regime of medication to get to the point of needling

but the cracker for me was their need to run the full dose of  immunoglobulin in quickly.

I may have lost the plot a little (lot)

and told the paed and the lovely pain doctor that I had changed my mind.

With twenty four hours and a whole bunch of them sleepless,

I settled with the fact that I needed to do something

and made peace with it.

Ivy has been on the Lovan now for just over three weeks

and she has been spending time with our awesome play therapist.

Tomorrow we are meeting another new doctor from Psychiatry (another catch my breath moment, when he was suggested as an addition to our ever growing team)

the paed and the lovely pain doctor have just been amazing

and you know,

I think I can see things starting to change for the girl.

She is calmer somehow -

happier

and she is even starting to come out of her shell a little.

She loves the pain doctor.

A lot.

I’d have to say there is stiff competition for the paed

for pole position in her heart, right about now.

Tonight, even though her heart was racing and she had a bit of a fever

and despite having her infusion

Ivy seemed relaxed and happy.

What a wonderful turn around.

For the both of us.

 

 

 

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27 Responses to “Turn around.”

  • Meg:

    Such great and beautiful news…. SO happy that can all happen within a week. Thinking of you all and hope this is a turning point xxxxx

  • Zelda:

    So glad that you may have turned a corner for both you and Ivy. Hang in there.

  • Kathy:

    I’m so pleased to hear how much better it was for you both and I love the photo.

  • Sam:

    Yay, so glad and I do understand how it feels thinking its an extreme way but it soo does make a difference here too and lovely staff actually make it in our case a happy place to go even (Strange child lol)
    I hope it continues for her I really do and the little reactions subside – u r doing the right thing as ure girl was happier

  • river (193 comments.):

    Relaxed and happy, reduced pain, there’s nothing bad there.
    I love the photo.

  • Denyse:

    Aaaaahhhhhh is the sigh of relief I felt reading this post… Great news. You know Tiff, I thought about you a lot this week & how easy it would be for someone to “dismiss” the fact that (via ignorance) of a mother being sooo very upset & anxious at the time of and before giving her daughter painful (but good for her) procedures. It goes totally AGAINST the mother-grain of “no harming my child” doesn’t it. What a turmoil it’s been. I can’t even be brave enough to do a splinter removal…I really, really think the bravest and most courageous person is YOU… Love D

  • alicia (63 comments.):

    so glad to hear some things are going right! i hope this is a trend that keeps going in your families lives :)

  • Mary:

    I can’t tell you how happy I was to hear this news, especially that Ivy did well through the evening! Now drop down, heart rate, and behave yourself.

  • MFA Mama (51 comments.):

    I am so glad that you and the girl got a little peace. It’s been my most fervent hope for the two of you for ages now. Sometimes it takes the right medical professional (it always seems to be a kind nurse) witnessing just what price treatment comes at to bring about a radical fix (like my youngest’s g-tube, which he only got after an incident in a doctor’s office with an NG-tube that still haunts me). Radical fixes are scary. But sometimes, necessary.

  • Rachel:

    Phew! Xx

  • Kim @ Frog Ponds Rock (88 comments.):

    YAY. This post made me smile.

  • Anne:

    If I was Ivy I would love the ‘no pain’ doctor too. I’m so pleased it was peaceful this time for you both. I love this pic of Ivy. You are very talented Tiff. X

  • tricia (167 comments.):

    I am glad that ya’ll can get a bit of peace. Take care of you and rest while you can.

  • Pixie (213 comments.):

    I am so relieved for you all.

  • deb zaret:

    Thank God, Tiff.

  • Jeanette (45 comments.):

    Yay!!

  • SassyCupcakes:

    What a relief. And a stunning photo too.

  • Jan:

    Hi
    I’ve been following quietly along and wanted to say I’m very pleased that things have turned a corner. I wish you, Ivy and your family all of the very best.

  • Mum:

    Your relief and Ivy’s too, feels palpable reading this post.

    If this is a real solution that does not result in her usual reaction, then it could just be the answer for you, Ivy and the family as a whole. Even though you have persevered all this time through Ivy’s panic attacks for her well being, it must have felt like child abuse and been so utterly conflicting all the while. You have obviously made the right decision and with the thoughtful help of the doctors and nurses concerned, Ivy can begin to realise how very much you have strived to make it better for her to bear and for you to be able to breathe a little easier.

    Here’s to some light at the end of a very long tunnel so far, at long, long last! :-) xoxo

  • Watershedd (56 comments.):

    Thumbs up! Sounds like you have a great Team Ivy!

  • Carolyn:

    That is quite honestly the best thing I’ve heard all week!. So happy that this moment was so much more positive!. Love the photo too!. Beautiful Princess Ivy. Xxx

  • Jackie:

    Awesome. xxxx

  • Donna Pittman:

    I am so happy for Ivy that things are turning around for the better with her anxiety! She is lucky to have a Mom who weighs decisions carefully and is willing to try new options to make the medical stuff easier to get through

  • suzie (66 comments.):

    IM so gald its a little easier.

  • Deb:

    PTL!!!!!!!!! Best news for you and for Ivy!

  • BW aka Barbara from Boston:

    Yay! Score another one for Team Ivy. :-}

  • Dianne Nunn (24 comments.):

    great news. Ivy can have a break from the anxiety and you can relax a little too. You are such a great mum under incredible stress. I am pleased the “team” is increasing to include a more holistic approach to your little girl.

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