The worrier, not the warrior.
It’s Monday tomorrow
and so I’d say we’ve made it without a hospital admission.
Once her heart rate came down to an acceptable number I knew (hoped) we would.
The thing is her ears are still gross, her temp is up and down
and the Erythromycin has played terrible havoc with her system
and so
she has blisters on blisters,
an upset gut,
and is generally just miserable.
Her cortisol needs are up and so we have had to push her Prednisone up too
and that is a whole other set of issues, right there.
I’m wondering how long she can live like this before it really starts to affect her soul.
I’m wondering why,
after twelve months of hearing that oral antibiotics don’t do anything any more,
we have just finished a course of oral antibiotics.
How could the paed think that it would be enough?
Tomorrow is IVIG day.
I’m looking forward to it and loathing it all at once.
Wishing it away.
I know that the Intragam will give her the boost she needs,
that her body will not have to work so hard to try to heal itself.
I know that it will give her the best chance at not picking up anything else
but
she’ll have to be accessed tomorrow
and as it stands
nobody is sure how that will go.
Access failed four times last month
and even the paed was unsure of what he was palpating
when he checked out her port site last week.
I’m scared.
I bet Ivy is too.
The stress of advocating for Ivy is great.
I don’t care how sorry for myself that makes me sound.
It is.
Being vigilant and fighting
when it is something
I really would rather run from -
it’s emotionally exhausting.
Making sure the infusion runs smoothly.
Worrying about whether the doctor turns up
waiting
feeling angry when he doesn’t
having to ask the nurses to call him
chasing him to get answers I need.
It’s awful.
On top of all that, I need to establish
what we are going to do.
The EES runs out tonight.
She has one more dose left, with no repeats.
My feeling is, without any coverage, things will go downhill very quickly from there.
I joke around and say that I will be taking my machete and my stomping boots
and that I am taking along extra gripper needles and anyone who hurts my baby, will be accessed within an inch of their lives
but the truth is…
the truth is
I just don’t know…
I won’t do her justice,
that’s what it is.
I often feel as though I am not a strong enough person
to advocate adequately for this girl, who is in my care, who I love more than life.
I know what she needs
but I often don’t know how to get those things for her
without upsetting the natural order of things.
It’s Monday tomorrow,
so I’d better figure it out -
fast.
I wish I had something else to say worthwhile …but you are strong, you can do this and you will get through this because you are the supreme warrior for Ivy.
Breathe deep my friend !
Eat Chocolate !
and I wish I could come hold you hand (s)xx
I’ll be praying for easy access and thinking of you !
This may sound trite (not to mention weird, coming from someone you have never met) but I wish I lived closer to you so I could be there with you and support you and Ivy and advocate for her when you are just too exhausted to do so. Just to be a back up for you. I don’t want you to end up falling in a heap because then you are no good to anyone. I worry about you honey.
I gather there is no such thing as patient advocates in the hospitals there. Any way of getting a legal advocate for Ivy that can have more pull against the bureaucracy on the issue of medical care only? Could you sue the hospital/doctor/ health system for the right of a minor child to adequate medical care. I don’t know the Australian health or legal systems, but are there no checks and balances – no hospital officer of the day who would mediate if a cry of inadequate care for a minor were made.
On the issue of accessing her port, is there any staff who seem more adept at it. If so can you get that staff person to always be the one who deals with her. Has the port simply failed, needing to be replaced. I believe they never managed to infuse her last time.
Sorry I only have questions, no answers. Bless you Tiffany. I wish I had a magic wand for you both. Praying for you…
Advocating for a child in the midst of a medical system is hard and tiring, I know. Keep fighting. She needs you. I don’t know if you have this option, but can you change peds? A new pediatrician could maek all the difference. Once I found a ped that fought for my kids, all I have to do now is the mom part. I am praying for you, that you will have strength and wisdom, that Ivy will heal, and that tomorrow will go well. Blessings.
Tiff, you are doing an amazing job, and I’m sure Ivy knows that you do everything in your power xoxox
I don’t know what to say. I really don’t. I just hope tomorrow goes well and you get to ask questions and get answers. I hope Ivy feels much better soon.
You are amazing and strong, even when you don’t feel it yourself. I’ll be thinking of you tomorrow.
Why is it so bloody hard? Really, why? I wish I could advocate for you both. I hate that your precious girl’s care gets bogged down in bureacracy. I hope it goes smoothly tomorrow. And I’ll be wishing lots of strength your way xx
Lots of hugs and best luck tomorrow!
I am hoping she gets well so you don’t have to go through this again and again and again – you deserve to enjoy your gorgeous ones.
You’re obviously both dreading it… What would happen if you just didn’t turn up tomorrow?? (Not feasible I suspect, but I do sometimes fantasise about just opting out of all medical stuff… Sure would clear the diary!!) Will you have N with you tomorrow as well? Could you take another adult along, even just for moral support?? Wish I could come with you… Will be thinking of you all day. (((HUGS)))
ALthough I don’t know you, your blog makes it clear that you are a very strong woman, great advocate for Ivy and wonderful role model for all your children. That you are tired and don’t know what will make the system work this time doesn’t make the last sentence any less true. I hope that the hospital doesn’t turn out to be the battle you are anticipating.
I can only echo what others have said before me. You ARE a strong woman, because you have to be for Ivy. Sending you ((huge hugs)) and hope tomorrow goes smoothly for you both. xxx
I’ve been reading your posts for quite some time though I’ve never commented. My daughter has a port as well. I’m sorry that Ivy seems to have issues being accessed. I wish I had some profound words of comfort for you but all I can do is echo what others have said.
You are a strong woman and you are doing all the things you should. My thoughts are with you and your family.
Tiff I think you are an amazingly strong woman, and Ivy couldn’t have a better advocator. You love her and stand by her throughout all she must endure, you bring her joy – despite/in spite of all she suffers. It sucks HUGE TIME that you are made to feel like you aren’t doing enough for her. This is when the “system” is letting her, you, your family down….I wish it wasn’t so, I wish I could do something.
Hang in there (not much else you can do) today, we out here in cyberland are fully supportive of you, and thinking of you both.
HUGS
I am in awe of your strength. It must be all but debilitating sometimes… the exhaustion…were you to stop and think about it (gee, thanks Hyphen for making me stop and think about it). You are a better human being than I ever could be. I truly pray that you have emotional support that surrounds you physically.
Oh Tiff! I wish you were here, I wish that I could give you a big hug and help you through all of this. I am so exhausted myself, and I have several doctors that are doing their jobs, others that aren’t. I wonder if researching through the IDF website could help you find something to better treat Ivy and her ears? There just has to be something better than this…
Can I ask you a question? Do you ever find Ivy sicker after her IVIG? It seems like every treatment for Sam lately has lead to him being sick and this is new for us. Not sure why, but we will be going back to the doctor tomorrow. He does have a bleeding disorder, a platelet abnormality, which is hard to swallow at this point, as the local hospital probably couldn’t handle him bleeding out, and the children’s hospital is about two hours away. SCARY!!!
What is EES? Is that her approval for the IVIG? How does that work? Here we are approved for one year at a time, so we won’t have to worry about that piece until october. But I am starting to wonder if it is even helping. Of course all the other issues seem to be getting worse and that may be why he is doing poorly, but sometimes I wonder if it is worth it right now
Listen to me throwing my own self a pity party. Sorry about that. All this to say I know what you mean and I totally get it. Praying for you, for strength, stamina, and wisdom. For Ivy, for easy access to her port, healing for her ears, and for all those that take care of her to be 100% on top of taking the best care of her that they can, and for them being available when needed.
HUGS!!!
aah Tiff, you can only do what you can do. Even God needed a bit of a rest and took Sunday off xox
You so are a warrior. I am in awe of you.
Hope today was ok for you both.
Hope today went well
Many hugs to you Tiff.
I can understand why you feel like throwing in the towel, I know I would. You seem to be on an endless merry-go-round with no end in sight and I know you are a worrier, and this constant battle to keep Ivy well is slowly but surely wearing you down. I also know you are Ivy’s warrior and that you can’t help keeping up the fight, because that is just you and you would never be able to live with yourself if you gave in. So, as war weary as you are feeling, don’t give up the fight and with continuing perserverence, hopefully each of Ivy’s battles can be won. xoxo
Massive hugs Tiff, although I know that is grossly inadequate. I really and truly hear you on advocating when it is so difficult for you, and it makes you want to run. I really understand. I hope tomorrow goes more smoothly than anticipated xoxo