Courage through sharing.
This post was written as part of the Finding Courage Through Sharing project over at In The Life Of A Child.
Ivy - born at 30 weeks, blistered rash, cow’s milk protein intolerant, lactose intolerant, eczema, nasty reflux, nasty poo, failure to thrive.
Nothing to worry about, nothing to fear. She’s a prem, it’s the medication, it’s just Ivy.
Ivy - middle ear infection, bronchiolitis, otitis media (chronic) with perforations, pneumonia, gastro, asthma, gastro, asthma, gastro, more colds and flu, more ear problems, another chest infection, asthma, eczema, her ears, oh, her ears.
It’s okay, she is small, family history, you expected this. This is our Winter. It’s just Ivy…
Ivy - grommets, infected adenoids, asthma, continuous discharging ear, hospital admissions, Staph, Pseudomonus, gastro, asthma, more gastro. Will it ever end?
The doctor’s tell me it’s just Ivy but I think there is something else. Don’t be silly, she was prem, you have to expect this…
Ivy - Long term antibiotics, EES, Bactrim, Augmentin Duo, Amoxicillin, Flucloxicillin. Nothing works. Ciproxin, hydrogen peroxide, flixotide, prednisone. IV antibiotics.
This is not normal. Could she be immune deficient? Could she have Ectodermal Dysplasia? Like her older sister? The doctors say that her bloods are normal. She is not like Imogen. She is just Ivy.
Ivy - diarrhoea, blood and mucous, huge blisters (bullous). Staph, biopsies, bloods, colonoscopy, endoscopy. Pemphigus, auto immune, weight loss, vomiting, crying, oh the crying. Pain, pain, pain. Too many hospital admissions.
Stop! I can’t cope with the tears and the pain. Hers and mine. There is something, there is. Look harder.
Ivy - more bloods, more doctors, more tests. It is pemphigus, no it’s not, yes it is. Anaemia, bowel problems, more otitis media, more of the same and the pain, the gut wrenching pain.
Listen to me! I am her Mum. Don’t placate me with ‘I don’t know’s’ and ’she’ll be right’s’. That doesn’t help. Another doctor and another, all the while getting sicker… Do something!
Ivy - gluten, wheat and lactose free diet, iron, prednisone. Things start looking up.
Some bloods have come back and you were right, immune deficient, ectodermal dysplasia, pemphigus, the doctors say. She’s a very interesting case, journal worthy. Yes but Winter is coming and I am scared…
Ivy - Hospital, very ill, septic. Ivy, hang in there, girl, we are getting closer to the proper treatment.
Will her life always be like this? I hope not.
Ivy - Dapsone, bad decision. Methaemoglobinaemia, hospital again, jaundiced, haemolytic anaemia. Sick again. More blisters. An ear that won’t heal.
It feels like we are back to square one. Where to now?
I have no idea.
Hopefully to a treatment plan that works. To Ivy playing and laughing and NOT having more pain that a 2 year old should.
It is so bloody hard. (((hugs)))
Stamp your foot Woman..
Straighten your shoulders..
Take a deep breath..
You are The Mother!!!!!
Listen to your Heart…. and then
Listen to them…… But dont accept what they have to say as fucking gospel..
Battle through.. We are here for you..
WE ARE HERE FOR YOU!!!!
You Fucking Rock!!!!!
We love you Tiff..
And we all want Miss Ivy to be Well…..
XXXXX KIM XXXXX
As the mom, you are the best advocate for your child–
I hope that life starts giving back some good things for you and yours!
Courage, Courage! you got it!
Tiff… I sobbed my way through this. Just SOBBED. Identifying with that longing for there to be a simple explanation, for it to be nothing. Doubting myself. Hating myself for doubting myself. Frustration with trying to get someone, anyone to listen. Resenting that when they finally do listen, it’s like watching Jacques Cousteau encounter a newly discovered species… wishing that they would see the child and not just the disease and potential journal articles. Despair and the near endless sensation that you are chasing your tail, that you’ll never get past that first square.
Thank you for sharing from your heart. I’m saying lots of prayers for you and Ivy right now, that she’s through the worst of this latest rough patch, that there are no more hospitals in you immediate future. Hang in there Tiff. I know it doesn’t feel like it right now, but you HAVE made progress this year - so much! Just keep being tough for that little girl, OK? I know you can do this!
(((Hugs)))
~Michelle and Jacqui
Oh Tiff, I can’t say anything to make it all better, I really REALLY wish I could.
Lots of love to you and Ivy. xxx
Print this post. Make multiple copies. Present one to a lawyer and sue the pants off those doctors. You told them in the beginning that she was like Immy and they refused to admit this. All along they haven’t truly listened to you.
“….don’t be silly, she was prem, you have to expect this…” What BULLSHIT!!!
Noah was born at the same time, going by their statement he should be as sick as Ivy. Many, many babies are born premature and they don’t have these problems. Have the lawyer call on whoever is the head honcho at your hospital and demand answers. Sue the hospital as well. This really sucks.
My head is spinning and my heart hurts just reading this. I wish more doctors would trust the hearts and intuition of mothers. There would be a lot less misdiagnoses going on. I hope you find more answers soon.
Hi, I run the Ectodermal Dysplasia Society in the Uk and would be happy to try and help you all we can. Please contact me. Diana
I hope that now you have a diagnosis that they can treat her properly and prevent some of the pain and heartache! Nice “meeting” you!