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Hopefully healthily home.

Putting a positive spin on hospital is hard

but it needs to be done

else you may lose what’s left of your sanity.

So before I go any further -

Ivy’s team have been amazing and our nurses brilliant.

I have never been so happy to report that things have run like a well oiled machine to get us to tonight.

We were forced into a midnight dash to Accident and Emergency on Monday

by  uncontrolled, unrelenting fever and an alarming heart rate

and Ivy has been becoming reacquainted with some of  our favourite IV antibiotics and hydrocortisone ever since.

She was in such a rapid decline that she dropped her oxygen saturations too

and needed continuous O2 and several hours to stabilise.

Tomorrow she’s going to surgery

so the kind surgeon can tend to the same niggly abscess on her belly that has been a problem since November -

which is what made her sick.

It was set off again by the full dose of immunoglobulin that was infused last Thursday

and then the gamma -

and the girl has been struggling since.

Of course that makes sense  -

an influx of antibodies are going to do what they’re supposed to and fight.

The new doctor mentioned that Ivy no longer has issues with inflammatory response ;

also true

and biologically understandable with the addition of gamma interferon.

It does its job well.

In fact, I’d have to say that for the last twelve months, since we started the girl on that medication

she has largely lived in some kind of inflammatory response for much of it.

The trouble with these pockets of infection for Ivy is that it also gets into the tissue

and without cutting all of that away

the bugs just proliferate again and eventually cause more issues

and it’s really difficult to excise all of the bad tissue without going overboard and taking too much of the good.

After weighing everything up, surgery seems our best hope, once again.

It was not a decision made lightly.

Can I just take a minute here to say that abscesses bite.

They really do.

They sneakily encase themselves in a protective biofilm that make it almost impossible for antibiotics to penetrate

but continue to infect the surrounding tissue.

Smart, I’ll give the bugs that.

Smart but conniving in an evolving bacteria kind of way.

Yesterday the girl slept.

She slept all day and all night

with her vitals all over the place

but today woke much brighter -

her temperature normal and her heart rate too.

I love it when things just work properly.

She’s spent the afternoon with the Starlight Captains

and with our awesome play therapist – having her medical play session -

something we have been trying to help with her anxiety.

That’s another post altogether.

There is so much going on with Dave and the other kids

and I feel terrible that I’m not there to help

and listen

and administer hugs along with those motherly words of wisdom that teenagers roll their eyes at and pretend to hate but secretly crave.

Perhaps that’s a post for another time too.

Tonight I’m  just hoping for a good outcome

thinking good thoughts for the girl

and a plan to get us healthily home.

 

 

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8 Responses to “Hopefully healthily home.”

  • Mum:

    Surgery does seem to be the only solution for resolving the abcess issue, even though it means she will have another scar to show. Otherwise there’s a possibility that it will just flare up again with the next infusion, so I applaud your decision, as hard as it has been. Sometimes it’s necessary to listen to your head rather than your heart.

    It’s so lovely to read that the medicos & nurses have made your stay as pleasant as possible this time & hopefully each time you need to be there in the future. Hopefully the prompt & appropriate care this time will mean an earlier than expected discharge and a homecoming, where Ivy can recover in a more relaxed and preferred atmosphere.

    Here’s hoping all goes well tomorrow and one more abcess and the inherent renewed danger with it, will be gone. Meantime, take care & try to get some sleep. <3 xoxo

  • alicia (26 comments.):

    thinking of you, praying for you all. hugs little Ivy.

  • Rachel:

    So happy to hear the teams are being great! All the best for today.. Been thinking of you all x

  • Jan:

    Every good wish for today – thinking of you as always.

  • Jan:

    Sending all the very best wishes to little Ivy and hugs to you as well. <3

  • Alison:

    I THOUGHT I SAW YOUR VAN IN THE PARKING LOT YESTERDAY, COULDNT MISS IT. I WAS CHECKING OUR THE FAMILY STICKERS ON THE SIDE

    WINDOW AND THINKING HOW AMAZING TO HAVE 7 CHILDREN…..I HAVE 6. WE WERE IN OUPATIENTS FOR LITTLE MISS AT HER ENDOCRINE CLINIC.

    THEN I THOUGHT IT MUST BE TIFFANY AND IVY IS BACK IN HOSPITAL. IF ONLY I COULD HAVE BOUGHT YOU A COFFEE AND SOME RESPITE! HOPE

    ALL IS WELL SOON. I HAVE BEEN CHECKING YOUR BLOG WAITING FOR AN UPDATE.

    HOEP ALL IS WELL SOON.

    HUGS FROM ACROSS THE LAKE.

    ALISON

  • Pixie:

    I’m glad things went better this time.

    Here’s to going home

    Xxxxxxx

  • river (193 comments.):

    I hope the surgery goes well and the abscess can be fully removed.
    (This reminds me of one of my favourite customers, about 70 years old, always limping with a cane because of an abscess on her leg that just would not clear up no matter what they tried. Finally after two years of suffering, she had surgery and her leg began to heal over. They did a skin transplant too.)
    Anyway, that has nothing to do with Ivy….I do hope that Ivy gets well enough soon to go home again, perhaps without the abscess her body will have a better chance of healing the other problems.

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