My family has a winter lurgy.
We are one of thousands of Australian families who are battling illness this Winter
and it happens every year.
A flu like thing, that includes a chesty cough and fevers and ear infection.
What isn’t fine is when Ivy gets it
because Ivy never just gets a cold or a flu or whatever lurgy is going around.
Ivy does it her way.
She was unwell yesterday and today she is worse.
I can’t get her temperature to come down – with the others I could.
It’s hovering at 39.5.
She’s not eating or drinking and while I’m doing everything I can to keep her nutrition up and her hydration up via her trusty NG tube (as advised by the dietician)
and dosing her up with Panadol and Neurofen and Coedine I feel like we are losing.
The paed is away (again) and the receptionist told us that we would need to present to A & E if we needed any assistance
which would all be well and good if any of the other doctors there were comfortable looking after Ivy without help form Ivy’s paed..
The really frustrating thing is that after our last admission I asked the Paediatrician for a new plan.
Strict guidelines so that in the event he was unavailable we knew what we needed to do and the doctors did too.
I asked him five weeks ago and he kept saying he would do it but last week when we went to see him (and he told us he was going away)
he still hadn’t
and now here we are
in the very position I didn’t want to be in.
In case you were wondering if we could contact the immunologist -
we already have.
She said that Ivy’s response to infection was ‘exciting’
and that I should watch and wait.
She doesn’t want us to increase her prednisone and she said that keeping Ivy’s nutrition up wasn’t important.
She actually said that.
Same line, different day
and while I do understand that it is exciting that her body is responding and trying to fight off infection
I wonder when does it become less exciting and more
just plain frightening
because I’m stressed now.
I’m anxious now.
The last time I sat on her (under the advisement of the immunologist) I sent her into adrenal crisis
and she got refeeding syndrome.
I feel uncomfortable with her ‘plan’ for my daughter
but I have nothing else to go by
and no other doctor willing to take Ivy on without guidance from the paed.
If he’d just made a plan when I asked for one.
If he’d just done that then perhaps I wouldn’t feel so anxious, so sick, so up tight.
He didn’t though and now he’s away.
Before you go off at me too, tell me that I should just take her in
or listen to the doctors more
or find another doctor
or let me know that doctors are allowed to take holidays and that Ivy is not the only patient in the world (because I know those emails are coming)
I’ve already thought of those things a hundred times over and
I get it, okay.
I know all of those things and more.
I know that you all read this stuff over and over again
and it’s frustrating.
It’s frustrating for me too,
more so for the little girl
and if she doesn’t pick up soon
I’ll be taking her into the hospital regardless of whether we have a doctor,
Oh Tiff. It must be so frustrating when the doctor’s say they will do something, and then they don’t. It sounds like sometimes they don’t seem to realise they are not only treating a condition, but playing with the life of a sweet little girl and her wonderful family. I hope something gets better soon. I will be thinking of you.
It’s NOT RIGHT!
I’m so very sorry Tiff.
Shit shit shit
Bugga Bugga Bugga
Massive hugs my friend xxxxxxxxx
Poor moppet! It’s so incredibly hard watching your kids get sick and being helpless to do anything about it. And that’s without me being able to begin to imagine what it must be like in your situation. I guess if you rock up to hospital, they have an obligation to treat her?
oh dear Tiff, poor little Ivy – poor you. Lots of hugs for both of you.
SHITFIRE! That so sucks so bad. Aww, Tiff here you go again. Fasten your seatbelts, hope its not terribly traumatic. Its not fair to Ivy that paed can’t get it together. And so you all suffer. Love and patience to all.
Sounds like camping in the ED to me :/
I say take no notice of the immunologist, who also does not seem to have any further plan than last time, and look what resulted then.
I say just follow up on your own plan, it’s the only way to go. Treatment cannot be denied, irrespective of there being no available reference to her paed.
Is there any way the local hospital could help in the interim?
Here’s hoping Ivy’s temp peaks today and breaks tonight or tomorrow so she can begin to improve.
I agree that you can’t afford to just “wait & see”. Not this time. No way! xoxo
Hang in there lovely. I really hope you can avoid hospital with her. Love. xxx
im feeling your frustration, Jacob has now lost almost 3 kg and continues on the downhill he als has this bug going aroung and hasnt got out of bed for 3 days, we too have no plan, and im unable to contact anyone that can help trying so hardd to stay away from the dredded hospital but feeling we will also be headed there soon, thankog for the jejunostomy. But is is so nfair that our kids are the ones who suffer xoxox hope ivy’s fever sttles soon xoxoxo
Urgh, so sorry. I hope her strength comes back soon. It is such a horrid unforgiving disease. I am catching up on your blog after a busy few weeks, Your family are as beautiful as ever. Thinking of you all.
It must be so hard to deal with , time after time, watching Ivy suffer it out.
No words xox
Go with your gut, go with the history you have, go with the knowledge you ave of Ivy condition….. Use a big voice n stand tall! Here if you need me xxx
Go with your gut instinct, Tiff, I can understand you’re feeling of frustration when there is no direction for your girl or for you xxx
So sorry to hear of Ivy being unwell!!! Tiff you will know what to do and when the time is to do it! Our prayers are with you! If only ALL doctors treated all patients as their own child! We had a doctor give our child the wrong antibiotics for a skin infection, and I (deffinately no doctor!) picked up the mistake. You have all right to feel the way you do!!! hugs to Ivy and you xoxoxox
Love and prayers to you…..am hoping that Ivy doesn’t end up in hospital! She is an amazing little girl and you are a brilliant mother!!!!
Feed a cold, starve a fever was the old adage, so the immunologist may be right in saying keeping up the nutrition is not so very important. Let the body focus on fighting rather than digesting. Then again, Ivy is a special case….
Have you tried sponging Ivy to reduce the temperature? Not with cold water, that would be too big a shock, and not a full body spong either. Warm water, sponging hands and face. Might help.
((hugs)) thinking of you all… hoping that you’ll have an ok night
Saw you were in A&E last night, I hope things are improving. Big hugs for you and Ivy.
Thank you for again sharing your thoughts with us – we need to know because we all feel your frustrations. You know what is best for little Ivy. Hang in there – many good thoughts are with you.
Praying for you all as you face yet another struggle. Ivy is strong and so are you. I donated blood for the first time in 4 years (a break for pregnancies and breastfeeding) on Tuesday and thought of you guys. I am about to start donating plasma. Thank you for the inspiration.
This is why mother’s instinct will always trump doctor’s knowledge. Hugs to Ivy (and you)
Take her in, Tiff. Whoever is on call will have to get a plan. It’s their job and maybe they will come up with something new and actually helpful, since Lord knows nobody else has.
Sorry for Ivy and all of you. Boo.
Her response to infection is “exciting”?
This is a person who needs classes about interacting with parents of sick children! Who says that to a parent? Another physician, perhaps, not a parent!
I understand your frustration. I hope she gets better!
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