I’m trying to find adequate words for the family meeting
but they’re mostly illegible and sweary.
My thoughts are a tangle of angry-ness and that makes my words want to come out as a string of obscenities.
Ever feel like that?
Lip service is a phrase that comes to mind, bullish*t is another.
I mean, I knew we probably wouldn’t get far but today was just…
such a waste of time and energy.
I suppose the doctors can say now that they have included us in a meeting, so we can’t complain.
We got what we wanted, without getting what we needed.
I’m going to list the proposed agenda that we were given;
* Welcome, introductions, acknowledgements.
* Treatment – where we are now and what lies ahead.
* The pros and cons of inserting another port
*How Ivy has coped with treatment so far (something many of you already know)
* What are the family’s current concerns for Ivy
*Questions for the medical team
*Things that could help communication
*wrap up and close.
What really happened (or what we heard) was this:
Ivy’s medical team giving a very twisted version of Ivy’s history, to suit their needs,
shutting us down about a port within the first five minutes
and then staring at us like we were the enemy for the next forty minutes.
The rest of the meeting was filled with David trying to put Ivy’s case forward and the doctors saying, (and I’m paraphrasing here)
‘we don’t care about quality of life for your child. What we care about is the illness and how we are not going to stick our necks out just so she can have some normality’.
Which admittedly, we’ve heard before, it’s just that I thought, with an advocate, we may have better luck
or that we would at least be able to have an open, balanced discussion, where we all considered everyone’s point of view.
How hard is it to understand that we want happiness, health and home for Ivy?
Why can’t they hear what we are saying.
The three big girls left the meeting feeling as though we had been jipped.
I felt angry and despondent
and with the feeling that it did nothing to help the client/ doctor relationship
or that anything good had been achieved.
David (the ever steadying hand) thought that at least all of the nurses and support people now had an idea of what we deal with on a daily basis,
both in our day to day living and when we are dealing with the doctors.
Perhaps that’s as good as it gets.
We were offered a chance to seek a second opinion from another immunologist in Brisbane (referred by our doctors)
a) nobody in our immune deficiency circles think very much of that immunologist
b) how would a second opinion from a doctor that Ivy’s team recommend be balanced?
Anyone who has to work with medical professionals knows that they all talk to each other
and that they all have each other’s backs.
We were not offered an independent opinion from another surgeon or any other doctor who was not connected, in some way, with Ivy’s doctors.
Besides that, it’s not the team that we have a problem with – it’s the situation.
It’s Ivy’s quality of life that we are fighting for,
not each other
but somewhere along the line it seems the doctors have forgotten that it’s not about them.
It’s not about David and I.
It’s about a little girl who deserves a better life
and in achieving that for Ivy we hoped it would be better for everyone in general.
As it stands today, nothing for Ivy has changed.
We still have to wait until she is acutely unwell, before we can seek medical attention.
We still have to put Ivy through multiple failed attempts at cannulation if we want to be able to take her home on gate pass
to complete her antibiotic course at home,
with a 48 hour check in with the team and representation every time a cannula tissues,
which at this stage is every twelve to twenty four hours.
It means missing school and friends and never, ever having enough time to recover before the next illness comes along.
If we want, we can send her to surgery for a temporary subclavian line
but, aside from going through another surgical procedure and all of the trauma that brings,
it means we will be tethered to the hospital room for the whole of the admission.
Also not acceptable.
Where does that leave us?
Well, at present it doesn’t give us much hope.
We feel pretty beaten down.
Will we keep trying to advocate for Ivy’s good health?
Yes we will
and while we are, we will make the very best of things for the small girl and for our family.
Nobody can take that away from us.
I am fairly clueless regarding things medical.
What, from your (and Ivy’s) perspectives would be the ideal?
I mean, apart from that miracle of Ivy getting well. That would be truly awesome.
I guess our ideal would be proactive, prophylactic long term treatment for a start, to break the cycle of illness she’s in, utilising a port because it allows Ivy the freedom to stay out of the hospital and the education department will allow her to go to school with one in – they won’t with a cannula and with a subclavian line, the policy has no option for antibiotics at home as the risk of infection is greater than with a port. That would be my goal right now and in that, my hope would be that she would have an extended period away from hospital and illness, gain some normality and then we could work on long term goals, like getting rid of the prednisone and boosting her body’s own resources. At the moment she is struggling to keep her iron, B12, ferritin and haemoglobin up and all of her electrolytes take a serious wack every time she becomes seriously unwell and we are finding it harder and harder to keep them stable. A very good question. Thank you for asking it.
It seems to me that you have very realistic expectations for what is best for Ivy. I am at a loss as to why they are unwilling to meet those expectations. Here in the states there are hospitals where the childs quality of life is the first priority (as it should be) but there are exceptions to that too. (Of course, here if you’re not happy with the care there are so many other hospitals to go to.) I live in the NY area and it can be a completely different story if you live far away from a major city. Hugs and prayers for Ivy and the whole family.
I’m so sorry tiff, I also understand somewhat of what you are feeling with our own battles with Jacob. What is their reasoning for no port? Is it because of infection risk? That’s why they won’t agree to Jacob having one, but 8 attempts at cannulation is ok?? We are heading to Melbourne soon to the intestinal failure clinic for another opinion
Unless it suits them and their opinions, nothing else matters!
What they say and how they treat you is not even close to howthey act behind your back.
God forbid we fight for normality for our children.
They may have a lot of letters at the end of their name, but it means nothing when they dont even know how yo respect and value the family!
If it is just the physical and medical situation doctors look at, you would think that any psychological effect suffered as a result of this failed treatment should also be a consideration as part of the patient’s well being.
Apart from all that you and David are advocating for her, this solution is what Ivy wants. One wonders how long it will be before the doctors actually listen to what it is that Ivy prefers and her reasons for that.
Surely they must realise that constant and repeated attempts to cannulate, which only remain in place for less than the required time needed, cannot possibly be conducive to best practices and are just as subject to the risk of infection as any other procedure.
It is therefore beyond comprehension why these other options are rejected out of hand when there is the chance to lessen the risk by reducing the frequency of Ivy’s admissions through a further trial with the port or at least long term iv antibiotics administered at home.
So sorry that a better life for you all, and more especially for Ivy, is feeling so hopeless when a simpler solution could mean such a difference. You and David have done all you can to be heard so now the hope has to be that Ivy’s team will finally come to the realisation that there has to be a better way for all concerned, including themselves. <3 xoxo
Tiff, have you thought of taking legal action in order to force the hands of the medical professionals. They would then have to clarify the situation. I am not one to run to the lawyers but I think in this case it might bring things to a happier conclusion. Surely Ivy is entitled to the very best life she can have. xxx
The DRs won’t allow a port because of the medical risk of line infection. However what they did not acknowledge is that *any* plan for Ivy carries risk, including the plan she is on now. They have not shared any comparative risk analysis with us, so we don’t know if they have performed one.
Is there the same type of limitation subclvian v picc? This port/ picc debate is on our radar soon too and I’m all over the place with what to do because the options/ risks have not been presented yet. I think I recall westmead saying we could go home with a picc and i read yesterday they “less” risk with infection than subclav….
Are they also reluctant to give long term antibiotics due to the risk of resistance? I can see why both would concern them. What if they did what you asked against their better judgement and she died due to a super infection she got from having a port and. This could not be treated due to resistance due to long term antibiotics?
Once your resistant it pretty much means death so I get why they would not want to make that decision . adr’s are people to- dedicated to helping sick kids and ai am sure once you clam down from this anxious meeting you will see they are not the enemy- but people struggling to do the right thing.
A lot of the time you like to play the devil’s advocate, which is fine. It always gives me pause for thought.
Do you not think that we have considered all of the risks multiple times? We have. We have weighed every pro and con over and over.
Risk of infection is a concern, super bugs are common place in Ivy’s world. She has had many of them and still acquires them despite having no central venous access. I am calm and I do not see our team as the enemy. They are an amazing group of people, who I respect. Having said that, having a sick child does not mean I am going to agree with every person who has a dr in front of their name. It is our job as parents to strive for what is best for Ivy. What is the point in quantity of life, if there is no quality? There is no perfect or easy solution here. Cannulation is terrible for ivy, both physically and emotionally. Doctors draw straws when they see her name. Treatment commencement is stalled because of lack of access. We know that every single person who is looking after Ivy’s medical needs feel awful pressure. We acknowledge that. I hate holding her down for procedures and I hate seeing her in pain and unhappy. She has the right to be happy, don’t you think? It’s just my opinion, of course. If I was not going to listen to theirs, don’t you think I would have doctor shopped until I found someone who would give me my way? I’m not though. Like I said, the team is not the problem, the situation is.
Some times I get so incredibly tired of writing my thoughts down and have people misinterpret them.
I am merely venting my frustrations.
If you were in the US I’d tell you to consider going to Mayo Clinic and having her seen there for another opinion. They are top of the line amazing and they listen. I find it shocking they won’t listen to you about a port. Amazing actually. Id have a new medical team stat. I know, not as easy as it sounds but her quality of life doesn’t seem to be very important to these people, and really should be.
If we had a choice between PICC and subclavian, Karan, I would most definitely choose PICC. Aside from one infection in the PICC that was in Ivy’s ankle, we have never had an issue. They last longer (sometimes up to three months) where a subclavian only has a 10-14 day life span and has a huge infection rate. If I had to choose between PICC and port -I would choose port. Minimally accessed but always there for when it’s needed. PICC is fantastic though if you only need say, six weeks of antibiotics. Unfortunately PICC is no longer an option for Ivy due to an arterial hit. I don’t envy you having to make those choices. Sending love xx
Tiff, it must be so awfully hard to be in your situation.
For what it is worth, I admire how you approach each situation with a fully open mind and a willingness to work with the team to come to a solution that is best for Ivy.
I’m sorry that you aren’t being met with a similar openness on the other side.
I wonder if there is any way – even going to Freedom of Information – that you could get your hands on the comparative risk assessment (assuming that they have done one)… or alternatively, compel them to do one?
Sorry to have upset you Tiff- I can see your frustration and in your situation I would be brimming over with frustration and pain of seeing your child suffer so much emotional and physical trauma. I am also a health professional so I can see that side too and feel a bit defensive on their behalf .
My blood boils. So wrong. I can’t believe that doctors here in Australia still don’t listen to the patient and their families, no strike that, I do believe, but it is so wrong. My heart goes out to Ivy.
You and her dad are doing the very best you can to advocate for her. Don’t give up.
Poor Family! I am so sorry about the lip service. I prescribe chocolate for all, a nice cup of tea, and some primal scream therapy – at least you would have an excuse for screaming. Lots of love and hope
Grateful that my doctors, here in Australia, who believe in working as a team, including the patient.
As someone who has worked as an allied health professional, I think that often patients and their families can’t understand what it’s like from the medical perspective, where they see all the risks and can weigh up, all the pros and cons. I believe that goes both ways, at times. The only way to solve this, is for both sides to learn how to communicate better. Often I’ve seen it simply be a comment that says, importantly, without hostility, “can you please explain why, you believe that what you are doing, is the best thing for me?” Putting feelings of hostility and anger and fustration aside, even though it is often difficult – takes away the automatic defence mechanism that we all have.
I wish you luck and Ivy the best life, that she can have with the evils of PID.
Thinking of you all, and hoping for good times.
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