I’m not really sure what to write about yesterday.
Part of me is grateful for the care that Ivy received,
part of me wishes I had just never breathed a word of what the girl and I go through
and part of me is so sad that I can barely function
and another part is angry -
angry with myself
angry with this disease
angry that there is no easy fix for any of it.
What I do know about yesterday is that it didn’t work.
The lovely pain doctor dosed her up with Oxynorm for pain, along with Neurofen
and a dose of Clonidine to help the girl relax
but after an hour
Ivy was unchanged
so she gave her a second dose of Clonidine and added in some Ketamine
but even with all of those anti anxiety and then sedative drugs on board
the small girl remained as anxious as you can imagine
despite knowing that Ivy hates the gas mask
in desperation we tried Nitrous
in desperation I held her down,
pinned her to the bed, while I let the doctor cup the mask over her nose and mouth
but that primal instinct,
that hyper vigilance
was so ramped up
that there was just no calming her.
It was the low point of the day.
The lovely pain doctor said that she had not seen a child overcome so much sedative medication
in a long time
and that Ivy’s long term anxiety was not good for her
and of course, I know all of that.
It’s the reason I asked for help in the first place -
because I know this is not good for any of us.
The come-uppance of yesterday is that
in looking for answers to help Ivy
all I seem to have achieved is to turn everything upside down again.
Now the doctors are suggesting infusions under a general anaesthetic
but to give her a GA will mean the mask and cannulation.
Both high anxiety markers for the girl.
A veritable catch 22.
They are suggesting (again) returning to IVIG on a three weekly basis,
although there are many problems associated with this;
poor IV access,
disruption to daily living,
troughing out every three weeks
and having increased breakthrough infection when we are already (still) struggling with breakthrough infection
and the fact that we will still have to give subcutaneous needles with the growth hormone and the gamma.
The pain doctor wants to talk to the immunologist about another long term line -
to take away the anxiety of ongoing needle sticks and let Ivy learn to trust medical procedure once more
( then again we will still have subcutaneous needles to do)
I have to agree with her on the long term line.
Ivy has often begged for one when it has come down to the wire
and her happiest and healthiest time was when she had a line with ongoing long term antibiotics
and anxiety was certainly not an issue.
No pain on access, you see.
However, infection and sepsis from the line is a big problem.
The immunologist wants Ivy to remain on subcutaneous immunoglobulin -
it’s proven to be safer
and says no to a line because of infection risk
and so does the paed -
having dealt with the abscesses and infection for the last 18 months from the second to last line.
Of course we could cease treatment altogether
but we all know that is not a good option either.
The pain doctor says we need to look at Ivy as a whole person and that not exploring any option to reduce Ivy’s anxiety is unethical,
to which I agree.
Everything seems like a trade off for something equally or more undesirable to what we have going on now -
when all I wanted in the first place was to be able to help Ivy
without harming her
and so, around and around we go.
Eventually the infusion and needles were abandoned as Ivy’s anxiety was out of control.
A conference of Ivy’s ‘team’ was hastily organised for today at 3:30
as with all of these group doctor meetings I’m not included as a part of the girl’s team.
I’m just the mother in all of this -
although I am really much more through necessity
and I do much more because I have to
and I feel much more because I love her.
Still, I have no say and I am not permitted to weigh in with my thoughts on my daughter’s health.
As with these meetings too,
it seems that none of this is about working together for the best possible outcome of a small immune deficient girl,
more that it is about who has the strongest will
and who will win in the argument of who’s agenda matters most.
I can tell you right now -
the immunologist will ‘win’.
As controller of the medications
she has time and time again won over every other doctor’s opinion.
and she can taketh away Ivy’s pseudo health.
I cried all the way home, while the small girl slept off the sedation that finally worked once the adrenaline had given up its fight
and the tears didn’t stop all night
and today they are there just under the surface.
Threatening to visit again if I think too much,
worry too much.
I may sound pessimistic but having been burned before in a similar process
I feel as though we will be handed an edict
we will have to follow through.
Regardless of whether we believe any of it to be a better option for the one person who matters most in all of this;
Oh, Tiffany. My heart breaks for you and our precious girl. There is no right answer and Ivy seems to be so lost amongst all the decision making. Please, please let me know if there is anything, ANYTHING that we can do to offer support. xxxx
What a horrible, horrible roundabout for you all….just know that people are thinking of you and yours…I hope that helps a little….x
I am so sorry. I continue to pray for Ivy’s miracle……….
My heart is breaking for all of you xx
Oh hun, so sorry it didn’t help yesterday.
Sooo soo soo complicated and it sucks not being included in decision making about your own child.
I know the General for Iv’s works tremendously well for Tyler in that he is actually relaxed going into the op theatre and lying down with the mask calmly on him. We had terrible times before that of trying to cannulate him awake, made worse by poor veins at that age, but if u are still doing subcut for other stuff then i cant see how it will really help the situation either
I remember u said she wasn’t much of a talker about it? Would you b open to trying something like hypnotherapy? I had it as a kid to help with exam anxiety and still use it to this day.. yoga to calm the mind? sorry just rambling. Im sorry that the answers aren’t easy but know that you aren’t alone in all this – hugz
I just… I mean… sighs and shakes head. How much is one girl, one family meant to bear.
Bless you both…I wish there was an easy fix. I know I can’t know the extent of her anxiety, this is not something we’ve had to deal with with our son. But, I wondered if she would hold the mask herself? Just to the point she starts to go to sleep, then they could hold it on to get her good and asleep. My heart hurts for you, and for her too!
Tiff PLEASE PLEASE PLEASE find yourself an advocate – you need someone in there speaking for you.
Damn, I really thought this would help. I’m so sorry that it didn’t. I am sending you both hugs and prayers.
Oh Tiff, my heart is aching for you both. Wish I could do something….anything. Always thinking of you and praying for a miracle. Take care xxx
All of your arguments for other options are totally valid, and for that very reason you should be included in any team consult when considering all alternatives. I can see the point of general anaesthetic for IVIG, but if Ivy cannot tolerate the mask, the other alternative is by injection and therein lies the anxiety. That apart, is it expected you go to hospital for a GA three times weekly for the gamma sub cut injections too? I think that would be an unrealistic expectation.
Hypnotherapy could be the answer, but if Ivy can resist sedation & anti anxiety meds as she did, she may also be resistant to hypnotic suggestion. If there were some way she could be induced to sleep deeply enough during the whole sub cut IG & gamma injections & infusion without waking, it would seem to be the absolute ideal solution for everyone, more especially for Ivy. That way there would not have to be any ongoing stress or anxiety and Ivy would probably be able to tolerate just the daily growth hormone injection, more particularly because she can see results.
Just another possible solution to consider, if of course it can be done, but when all is said and done, as you have already pointed out, you & Ivy too, are powerless in the scheme of things. Everything crossed that the team conference can come up with some mutually agreed viable alternative. Keep hoping for a reasonably do-able solution because without a doubt, there has to be something that can be done to relieve these anxious, stressful and heart rending situations. There just has to be. <3 xoxo
Oh Tiff, I can’t write anything without it coming out sounding wrong in some way. I have my thoughts and they are very much with Ivy and her parents, whilst sitting on the other side at the same time and seeing how the medical system is trying to work. Hugs to you all.
hugs – It had to be tried Tiff – if it worked you had won for the moment, and it hasn’t worked but (at least in theory), other than a truly sucky day and more doctors being more aware of the issues you’re not worse off either.
Are there other kids who Ivy can talk to and maybe find out how they deal with it? Maybe there are different answers than the ones the big people keep coming up with. Diabetes support groups and other people dealing with huge numbers of needles and tests?
Can you write out your lists of pluses and minuses of all the options and get Ivy to help you? That way she might understand that there is no perfect option, and maybe she can contribute to the difficult job of weighing things up. Maybe she can understand that the mask is there as a not-have-to-feel-needle, and think about it in a slightly different way.
Oh my heart just breaks for you both
It does not seem right that you are not included in the discussion – even if only to hear all of their arguments and give your side of things. Nobody knows the whole picture as much as you. Nobody knows Ivy like you do. This is as much about her being a little girl asked to cope with big stuff as it is about the medications. I pray that they come up with something thats right for all of you. Blessings xxx
You poor darlings. How the hell can you all carry on, I don’t know. I am going to go to the dark side and will light candles for you, ask for Guardian Angels to come to your aid and do EFT Tapping on me as a proxy for Ivy. Desperate times call for desperate measures.
If I lived near you, I would come and help out in the house, cook family meals or take kids to school. Tiff. ask for help if you need it too from family and friends. with much love and care.. XO
i am so sorry, tiff. this just sucks. for ivy, for you, for dave, for the other kids. it just isn’t fair.
when i was living in the dominican republic with a baby from the orphanage i was working at in haiti, she needed to be sedated regularly for tests (mostly mri’s)…frantina was nearly two, & she fought off sedatives like no body i have ever seen. her little body, though it was tiny & sick, was just too amped up to relax. it was horrendous, what we had to do to her. in a third world hospital they refused to do anything iv for her. i was forced to wrap her up tight in a blanket, tie her in ropes (literally), & force her into the mri machine. it killed me every. single. time. i have nightmares about it, still.
seeing as i could not shield frantina from certain traumas (& it took me a long time to realise that i really couldn’t), the only promise i could make her is that i would not leave her. it doesn’t change anything though, i know. i was still the one tying her up. i was still the one restraining her while they tortured her little body. it is harder with ivy, because she is older. she can rationalise & delay & use stall tactics. you do what needs to be done for ivy because this is her life on the line. i did what i had to do for frantina for exactly the same reason. but with frantina, after several surgeries & months of rehab, she got better. we had TIME to work through the trauma, we had TIME to recover without the constant threat of the very things that caused the trauma in the first place. ivy doesn’t have that…& that is heartbreaking.
i don’t have any answers. i’m trying to think of other options. i once looked after a little boy with in oncology. he had severe behavioural issues, & i mean severe. couldn’t even get a temp on him without three people restraining him. he was about three. he ended up requiring generals for port need changes. but that’s only once a week. then there are the littlies having radiation daily pre bone marrow transplant. they would have generals twice a day for a week. i guess what i’m thinking through, is that having a general several times a week ISN’T impossible. at one point i had a general every second day for three months. not fun, but possible. the question is how the heck to get the drugs into her sweet little body, to induce the anaesthetic in the first place.
i’m thinking…oh, lets face it, you’ve thought all this before & a million times more thoroughly than i am right now. i’m sorry. i just….i’m really sorry. this sucks. that’s all there is to it. i’m sorry. x
Huge ((HUGS)) for you and Ivy
This is just an idea in the realm of can I think of anything, anything that might work?? Imagine this. After Ivy has her anti anxiety med and sedative, have the team (or whoever does the procedure) approach, attempt, and then pretend to give up, saying not for today but knowing full well they’ll return in an hour, after Ivy has had a milder/more moderate anxiety reaction, let her adrenaline ease back down to earth and then allow the sedative to kick in…. It’s not an idea without issues, such as trust and what if she catches them in the charade, but it may have merit too. Please forgive me if this idea sounds ridiculous-I really am just trying to think of anything I can that could possibly help. I’m very sorry you and your sweet girl and whole family have to navigate such a difficult road, again and again. Hugs to you from Vermont. Leah
You are doing an incredibly hard job, and you are doing amazingly, even when it doesn’t feel like it–perhaps most when it doesn’t feel like it. I don’t know how it works in Australia, but in the U.S., the parent can insist on being part of team meetings, if they aren’t invited in the first place. There are also different advocacy programs here, from social workers to lawyers to volunteer professional advocates, whose only responsibility is to the child. They aren’t nearly prevalent enough. If you can find it in you–some day soon, if not today–insist on being privy to these care conferences. You are important.
No sage words,just love
Lots of love, hope peace and healing. Bless you both. Hoping for a little miracle for both of you.
Feeling for you and Ivy and the family. <3
How are your anxiety levels Tiff, through the roof I'm thinking? You must be exhausted. I know that this is off in another direction but have you managed to find time to get some anxiety med's for yourself, to help you, while you battle to help Ivy?
Tiff – have they talked to the pharmacy people? Could some of the injections be combined to reduce the number of needles?
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