There is a grieving process when you give up on a doctor
a doctor gives up on you.
Especially a doctor who has walked our journey with us from the beginning
and I am grieving that, I think.
and the panic I feel at having to start again.
Finding another who understands Ivy’s disease process is difficult
and leaving somebody who knows more about our family
and especially our daughter, than most other people, is scarily unfathomable much of the time.
Truth is, having him as Ivy’s paed has been like having a third parent – he knew her that well
and I felt that comfortable with him that I could bounce thoughts off him easily and without fear.
Sure, there were plenty of times that we disagreed and became frustrated with differing points of view
but when all was said and done we all wanted the very same thing;
the best for Ivy.
It has been three weeks since the paediatrician couldn’t look me in the eyes
and told me that he would follow up post hospital admission
the next week.
As soon as he said it we both knew that it wouldn’t happen.
In fact it has been obvious that he no longer wants to be Ivy’s doctor for a little while now -
almost two months since I asked him for a new plan
and help with details surrounding adrenal issues
and Ivy’s ongoing weight issues too
and three months since I have felt that he has been involved in her care at all.
It’s like after the long hospital stint in March through May he suddenly balked.
He was amazing during those months.
When Ivy had the arterial hit in theatre and I could not go into her
I was on my own and frightened and he was there for Ivy in a way that made me feel honoured to have him as her doctor.
He was thorough and on top of each issue as it presented,
when she was sick he was clearly worried about her
and when he wasn’t available he left clear plans in place
and I loved him for it.
Not in any romantic way at all
but in an appreciative way.
I’ve always had a thing for the protectors in this world
and before you ask -
I thanked him often and told him how much his care meant.
I may vent my frustrations here (he swears he doesn’t read the blog)
but I always say thank you when thanks are due.
He pushed for the growth hormone, did all the paperwork and made application
and it was he who phoned up the immunologist and pleaded Ivy’s case for the subcutaneous Ig.
When we were sent to Westmead though, it was like he cut some invisible tie he had with the girl
and even though he has seen her once since the whole children’s hospital debacle (it was very strained)
and has put his opinion forward throughout the last three hospital admissions
his absence has been felt keenly
not only by me but by the small girl too
and the nurses, who ask if he is coming to sort things out.
I feel abandoned almost and very vulnerable.
I could say I don’t understand what went wrong but that wouldn’t be true.
I’ve thought about it a lot.
Perhaps I pushed too hard for what I needed to feel safe, in looking after Ivy,
perhaps he feels helpless because he can’t fix things
or perhaps he thinks we are all becoming too familiar with one another and doctors are not supposed to become attached.
There are a myriad of reasons, I suppose, for communication break down
and perhaps I will never know
but I do think that he is done looking after us (and I say us because when you are a paed, you don’t only have to look after the child – you have to look after the family too)
but he hasn’t found a viable way to discharge us from his care yet.
I don’t want to prolong the inevitable though.
I need to find another doctor who can fill his shoes and then some
and that is going to be hard,
living in a rural area,
with limited access to doctors who know about immune deficiency at all
and who care enough to become involved -
yes, care factor, when you have a chronically ill child is important
and being available is too.
I hear about friends, with children who have the same disease as Ivy, who have these amazing doctors looking after them
and strict plans and protocols and guidelines for hospital admissions
and I want that too.
I want that security for Ivy and yes, if I’m honest, for me as well
but I’ve no idea where to start to find a doctor like that here.
My first choice (after Ivy’s current paed) will not take Ivy on
and my other choice works from the same rooms and it would feel very strange.
I want to do it now though, while Ivy is more or less okay
and I want to give the paed an out
before he feels the pressure of our needing him again when Ivy becomes ill.
Why that makes me feel like crying,
I’m not really sure
but like I said, I think there must be a grieving process when it comes to letting go.
I felt that grief.. that breaking up feeling.. when leaving a physio. No way near the same, but there was that closure that needed to happen and it was hard. I know I had a lot of that with the drs after Avery too…
Much love to you as you navigate this next part.
I think there is a grieving process for loss of anything, no matter how great or small the loss is.
But he has been there for so long. He has earnt our trust and Ivy’s trust and he will always, always be apart of us- her especially.
It’s so sad to feel that he doesn’t want to be there for us anymore. It’s sad and scary and disappointing. You nor Ivy deserve this, no one does. Although this is mostly the fear and sadness of letting go, there is also the unmistakable feeling of being given up on. I think that’s what hurts the most.
Grief is everywhere in life and it is rarely easy. Thinking of you Tiff and family. xx
It isn’t wrong or strange to grieve. He has been such a huge part of your lives. The #1 who has stood beside you and listened. The one who has explained so so many things. The one you knew was looking out for Ivy.
Big love Tiff x I always think of you and Ivy, and hope that by some chance one day Ivy’s world will include no more hospital, just running and playing… and laughing.
The paed has been a huge part of your life, no wonder you feel sad that he is leaving you and Ivy. I really really hope you find someone fantastic to fill his shoes, Ivy and you deserve it.
Silly Question…. can you say to him “Look I appreciate everything you have done for Ivy, and for us as a family, but I feel we both need some distance and perspective to allow Ivy to get the care she needs. Who would you recommend for us to transfer to?” It gives him an out, it gives you some advice and you dont drift apart its a clean break. It also means that her records might actually get to the new paed intact.
Tiff, these things are so difficult to understand when we are in the midst of them.
Perhaps the doctor is just tired or has some other personal reason for needing to let Ivy (and your family) go. I am sure it is not easy for him either.
This could be the beginning of an exciting new pathway for all of you. Stay strong – hold each other close.
If you like the doctor who shares rooms with your current pead then ask him if he is willing to take on the care of Ivy or ask your current doctor to find someone else to look after you.
Take the initiative and have something in place before Ivy needs urgent attention,. Be active – not reactive if you can. These are tough times and I wish you didn’t have to go through them.
I send love and hugs,
Oh my heart is breaking for you. It brings back painful memories. I remember my paed ringing me on a Fri night we were on the ward and he told me he didn’t know where else to do, he had no other plans for L. He was the ONLY one that had stuck by our side, the only one. He knew our family, we had kids the same age… Everyone else had passed the buck (L had no actual diagnosis). When he rang I felt like throwing up, if he gave up on us what the hell was going to happen. Where to from here….I ended up texting him to say let’s stop the tests and the procedures and could we just use him as our co-ordinator, but please please don’t give up on L, I put my heart on the line. We never spoke of it, but he didn’t give up on us he waited on the sidelines and we knew he was there. Can you make an appt and voice your concerns ? Or write him a letter ? I am so feeling your pain. Sending lots of love.
it’s definitely a grieving process, he’s been part of Ivy’s life and care for so long.
But if he’s unable to continue, for whatever reason, ask him to recommend someone else,
someone knowledgeable, someone……
Oh Tiff. I have to go to work. Will email you later. You need to talk to him before you make a move so it happens the right way…
I can certainly understand that you feel abandoned and are grieving from losing Ivy’s primary carer after such a long & difficult journey together.
Perhaps he has some regrets now for involving so many other referees in the specialists he has brought in to assist his decisions and now he feels incapable of making an independent decision for Ivy’s care without argument from them and he feels , as a result ,that it has been taken out of his hands and that any input he has ,is overidden and of little consequence ultimately.
In any event, maybe the time has come to ask him for a referral to another paed so that way Ivy’s records can follow. A fresh look at your concerns and all of Ivy’s issues could be “just what the doctor ordered”. It’s got to be better than feeling that you’ve all been left stranded without knowing what happens next. His colleague could be a good option,that will give him the opportunity to “bow out” but still retain his interest and possibly continue to advise.
It does sound as though you, too, are just about ready to let him go but whatever you decide I know, will be the best option for you both. xoxo
Of Tiff, my heart is aching for you. I can’t imagine what you are going through…we have changed doctors a few times, but never the pediatrician. I think I would be completely terrified without her. Especially as we may be starting this journey with Preston. I don’t completely understand how things work there, but could you search for a doctor on line, and read reviews from other patients? When we get referred to a new doctor that is how I always figure out about them. I just google them to see what I can find.
I certainly will be praying, that a fabulous doctor comes into your lives, one that is better than you could have ever dreamed. Thinking about and praying for you all
Hmm it wouldnt let me post my last comment…I can’t even think about losing our ped, I am so sorry you are in this position. I will be praying that a new doctor comes along that is better than you could have possibly imagined. Have you thought about searching on line for a new doctor? When we are referred to a new one, I always look on line to read reviews of what other patients have said about them
Although Boo does not have to face the battles your Ivy does, I keenly felt the loss when her rheumatologist left the US to follow her husband to Singapore. At one point I felt she was choosing her family over my daughter. She was our touchstone when other physicians kept passing Boo’s symptoms to another specialists. She was the one who followed lab results from all doctors and called our attention to things other doctors were too busy to pay attention.
Allow yourself the grief. It is hard when we lose some one so integral to our child’s care.
Tiff , my heart hurts for you ,I hope there is some way you can communicate with him ,
So Ivy and you are handed over to some one ,
by him with gentle hands,
if he feels its the best for Ivy .
He may then still be there ?
Love Sharon X
First, Immy is wise beyond her years – another amazing Tregenza.
Sorry about your loss – hope it is for the better for the little miss. How about asking your friends who are dealing with immune issues also for a referral to their doctor. Maybe that physician will work the same magic for you. It might be appropriate at this time to write your original pead thanking him for his time a championing of Ivy for so many years, then move on.
Could you ask the kindly anesthetist from a recent hospital stay if he could suggest a paed versed in immunology who practices his humane brand of medicine. i have even asked staff from two major hospitals in Boston if they know of any outreach programs in Australia – negative response unfortunately Wish she could be seen in the US. Wish there was something that could be done to help you all out.Wish I had a magic wand… XX
I do feel for you, it is tough when we feel as if we are being abandoned by a Doctor/Professor. Especially when we have put a lot of trust and faith in their abilities. It sounds to me like your Pedi has realised that as much as he want’s to help Ivy, for whatever the reason he is no longer capable. The challenges of living in a Rural Community and gaining excellent medical attention are very limited, most of us resign to up rooting/moving to the big smoke just to get the best of treatments available. tI’s tough, but necessary.
May I ask how much Prednisone (oral) or hydrocortisone (Push) Ivy is administered and how often?
I understand your frustration as a Mother, and I understand Ivy’s, as an adult patient and a once chronically ill Child.
thinking of you both:) <3
I don’t mind at all. Ivy is on 20 mg of prednisone a day, roughly 1mg per kg. When she’s ill, that is doubled and has been doubled also when the abscesses are flared. When she comes into hospital she initially starts on 50mg of hydrocortisone 6 hourly until stable. As soon as she is getting better the doctors reduce her hydrocort and then start a reducing regime to get her back to 20 mg of pred. I know this might seem like a lot but it is what keeps the pemphigus under control. She has been quite cushingoid in the past but the growth hormone has changed those features a lot since she started on that.
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