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The “Ivy factor”.


 

Writing a post has seemed impossible until today.

Things have  been difficult to say the very least and when I wrote last week it was just the tip of the renal failure iceberg that we had begun to deal with.

Ivy spiralled into a period where everything that could go wrong did and was so very sick that all she could do was sleep and vomit.

Her urine output dropped to almost nothing.

Scary things like dystonic seizures happened and MRIs of the brain ( thankfully normal)

and huge shifts in her electrolytes which caused her blood pressure to rise and her heart rate to fall into her boots.

In the mean time her peripheral IV access was becoming impossible and cruel almost.

One, sometimes two new cannulas needed in a 24 hour period and numerous attempts in between left Ivy black and blue.

Taking blood twice a day was no better and even the very best phlebotomists had to have more than one attempt.

It was traumatic and sad and just plain awful for the girl, who just wanted to be left alone in her misery to sleep.

She became drowsy and hard to wake

and we knew that something needed to change because Ivy’s body was unable to keep up any more.

She was flagging.

Her lovely new doctor (who isn’t new anymore and I really should think of a different alias) and the paed started talking about refeeding the girl,

who was beginning to lose muscle and important enzymes as her body literally ate itself to sustain the energy she needed to fight.

Tubes were placed and vomited up and placed and vomited up

and finally it was decided that Ivy would go to theatre to have a subclavian line inserted, a scope and an nj tube placed deep in her bowel, to bypass her stomach

so that refeeding could start.

It was, perhaps, the very low point of this admission so far.

I may have totally lost the plot with a previously unmet gastro doctor and cried the day through.

It might have been a 24 hour pity party.

Our nurses are always so amazing and they were even more so as I snotted and sobbed my way through the thought of putting Ivy through everything

but that everything went well in surgery and the anaesthetist came to me with good news -

that the line, although not in as far as he would have liked, was at least in.

He said, quite seriously;

“there is always that little bit of the ‘Ivy Factor’ that you need to take into consideration”.

Indeed.

The Ivy Factor led that same subclavian line to firstly become blocked and then uncoil itself from the vein less than 24 hours later

and led her potassium to sink to almost ICU worthy levels

and led her heart to start playing up too.

When I write it down it seems seamless and simple but it’s not been at all.

The good news is this:

Ivy’s kidneys are beginning to work properly again.

Her blood pressure is starting to be controlled with the addition of medication.

A new central line  was placed by the kind surgeon on Saturday and

even though it too became blocked about four hours after our return to the ward,

our first bit of good luck was that after much pushing and pulling, sighing and cursing, the damn thing promptly gave in and started to work again.

Ivy is having more and more awake time and happy days where she can play with her brothers and sisters.

Refeeding has started and even though it is slow going there, we are making progress.

It is a slow but steady process.

Ivy’s team have been wonderful

and concerned

and thorough

and forgiving of my outbursts

and I  really could not ask for better for the  small girl – Ivy factor and all.

 

Dedicated to our gorgeous nurses that read here –  who understand the Ivy factor very well.


 

 

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20 Responses to “The “Ivy factor”.”

  • valarie k. (5 comments.):

    I hope things continue to trend upward.

  • Zelda:

    I love that “The ivy factor”. It shows you have doctors and nurses who know your little miss and her quirks. I bet you it becomes a watch word with the surgeons for any kid whose body does not necessarily respond as it should. Oh they have a little bit o the ivy factor…. :-)

  • Karen:

    Pleased to hear that the new line is in and working, and that the beautiful girl is feeling a little better!….now you can plan that whole family sleepover. xx

  • Kim at allconsuming (2 comments.):

    Oh Tiff. We’re going through a mere trifle of what you are but I so wanted to ring you this week and have a little sob on someone who just fucking gets it.

  • Jodie:

    Always in my prayers xx

  • mum:

    What an absolutely dreadful ordeal you’ve all been through, including the very concerned medics & caring nurses. There is another positive side to the “Ivy factor” & that is her courageous & fighting spirit against all the odds, when there seemed next to nothing left to sustain her. For me, this is the epitome of the “Ivy factor.” What indeed has sustained her, together with the mammoth medical intervention Ivy has endured, is the intense & sustained love, care & vigilance only her mum, with such a brave heart & indomitable strength, & a wonderful supportive family, can give.

    So hoping for continued measured progress, without further complications, on the way to continued happiness & health. Ivy certainly deserves a break from all she has been through this time, as do you all. Sending every healing wish & love your way, for all of you. xoxo

  • Jan:

    “mum” has said everything so well that I cannot add more – except to thank you again for sharing Ivy’s journey with us. Have been wondering so often every day how things are going. So many thoughts of you all. xxxxx

  • Jennette:

    Those eyes…….
    Hugs to you both for all that you are enduring.
    My thoughts are with all the family

  • Alison Sorensen:

    Thinking of you and your girl. Any mother who has been thru what you have been thru in the last 2 weeks is allowed to have a 24 hr “pity party” except I wouldn’t call it a pity party I would call it coping which I think you do incredibly well. You’re in my thoughts and prayers.

  • Maryam:

    Thankful. Always in our thoughts and prayer.

  • Kathy 2 (7 comments.):

    Oh, oh, oh … Tiff, what an incredible ordeal for you all. So thankful to hear the kidneys are pulling up, and hoping for continued improvement day by day.

  • Denyse:

    Dear, dear Tiff, these have been dark, dark days & dreadful nights too… I believe this child has qualities gleaned from her parents & her experiences in 8 short years to make her the most amazing child. Thank you JHH people & all who care for Ivy & her mum & dad & family. This is from just one member of the community who loves this girl! D xx

  • Dianne (35 comments.):

    So, so glad Ivy is feeling better. What a traumatic time for you all. You deserve a little bit of pity time don’t be hard on yourself. Just read your mum’s words she sums it up beautifully. Hope everything keeps on the up and up and beautiful Ivy gets a break xx

  • kelley @ magnetboldtoo (13 comments.):

    I can’t even comprehend what you are going through.

    But I still buy the lottery tickets so we can Segway through the halls of that hospital.

    x

  • Trish:

    What Kelley said ! I do understand a little of how serious it must have been and how harrowing to watch Ivy suffer. I cannot imagine how you didn’t cry every day. I’d be a mess too.
    One day we’ll have a chat and a big hug.

  • Ruby McGill:

    In between those words I can read the fear, the heartache, the depths of despair; so I am glad that Ivy is finally beginning to show some positive signs. It will probably take a long time for her to get back to her normal – and I hope that you can overcome the feelings that this hospital stay have brought. Best wishes for you all.

  • Cade:

    I’m so glad she’s starting to “turn the corner” and hope it keeps going steadily in that direction.

    Don’t feel bad for any outburst or meltdown- you, of all people, are more than entitled to them! It would be frightening if you didn’t have those at times.

    Best wishes for your family. Take care.

  • Lisa Fisher:

    Glad to hear this latest update. Not giving up my prayers for Ivy and all of you yet. You’ve done so well! Hang in there….

  • BW aka Barbara from Boston:

    Aww, hon, that truly sucks. Your family has to catch a break at some point…make it SOON. Glad the worst is over, i hope. Love hugs and blessings.

  • Michelle P:

    I am sorry to hear that Ivy has been so sick. You must of been so scared. Send Ivy a big cheeky smile from me. She is so brave, much braver than any little person should have to be.

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