What to expect.
To parents with a chronically ill child who is going
through the transitional stage from paediatric to adult care.
Part one Brace yourself.
From birth Molly has been poorly.
At just 6 weeks old she was allocated a paediatric consultant who cared for all of
All of them collectively.
Because of course she is ONE person. A small one granted but yes all of her problems were collectively
inside her body!. Obviously as a human ( if any aliens
are reading),she is all bound together in the form of a whole. I'm sure there is a mathematical formula I could use here.
Small child = lungs + heart + all innards + skin + eyes + ears + brain + bones + limbs + head + cute face + all other gooey bits. = 1
So as things progress through the journey of life with a poorly child, other consultants were introduced. To Help the mother ship controller consultant . She called upon them to help put the wobbly, unknown problem areas of her, back together. The bits of broken jigsaw that other consultants specialised in.... * refer to the maths.
This enables the controller
consultant to look at your human as 1 part.... Just one.
SO You end up
with a tree!
This is our tree. From 0 to 19
* first tree below
At the centre of the tree is My Molly.
'The enigma' the child who baffles medical science. The child who can run about the playground like a crazy squirrel with a cold one minute, and then BOOM! The next be lying in an oxygen tent with double pneumonia.
(She goes down quickly was soon written in red on her notes) :/
She is interesting.
She is a challenge. No one can fathom her out.
The branches, which I tell you were very extensive by age 14 were full of amazing people. Call us the Mother oak tree of all oak trees which ever existed on planet earth!
Well they all confer
with the king branch the Mother trunk! And this would be Dr J !! Molly's paediatric consultant. We shall call her 'The J Dawg#'
Now despite the fact molly was undiagnosed
for 14 years. The J Dawg did her very best for the first 11 years of her life. She saw her in clinic every 3 months. She oversaw her care in hospital on the many occasions she was admitted. She spoke at length to colleagues about the
complexity of Molly's condition & the baffling symptoms she presented.
The thing was Molly presented with primarily a bad chest so this was the main concentration of her care. J Dawg would sometimes just
look at us in clinic and shake her head at the immensity of molls recurring illnesses.
Baffled!.. we were all baffled.
Moll was 6 when
she started seeing Dr H upon the J Dawgs referral. Dr H was a genius!! The head in his field of chest / lung and respiratory care. Good one Dr J ! Dr H was a very welcomed addition to our tree.
There was one thing concerning Dr H which always sticks in mind. At 7 or 8 after he had searched high and low only discovering
some floppy tubes in Molly's lung. He came to this conclusion. That while Moll did appear to now have a chronic lung condition it was secondary...TO SOMETHING ELSE!! (Never was a truer observation made although diagnosis was still 6 years away.
tree grew further. It blossomed into a magnificent tree of amazing doctors, specialists nurses, physiotherapists and consultants of all kinds. Still at the centre my Molly. Still poorly.
Well at the age of about 11 The J Dawg had held on to Moll as long as she could and so passed us to the
general paediatric consultant for older children. He also specialised in chronic chest problems. The tree kept on growing, and growing, unfortunately molly did not. She
was now 11 but in age 7 to 8' clothes. Because I'm small (5ft) it was not seen to be that much of a problem. she was small because I was small ( big mistake) always be growth aware. I can understand this in a way because the tree branches were concentrating on keeping her alive.
The bouts of pneumonia, chest infections, chronic asthma And now allergies to antibiotics were rife
So to the tree was
added immunology. Molls immune system surely was faulty, she was still poorly every 3 to 4 weeks.
Another day another branch. Branches branched off of branches and branches branched off of them.
Although I'm seen as an activist mother now, back then I was totally trusting and happy about molls care. It was not by my asking that the tree was growing bigger. I was not a fussy
mother. The efforts were the efforts of the mother controller J Dawg who I trusted implicitly.
Lets fast forward a few years. Moll is 16 her tree is massive they have a diagnosis. Its a scary diagnosis a life threatening diagnosis Hypopituritsm, with Adrenal insufficiency. DR H GETS MY STAR BRANCH AWARD! He and J Dawg knew there was an underlying
condition. The problem was it was a 1 in 100,000 condition. No wonder our tree was so huge.
It took 7 further years to find this from the referral to immunology!
They found it! They saved her life. Lizzie the phlebotomist was the nicest blood
taking lady I ever met I also give her a star branch award we even hugged when moll left immuniology, i thanked her and her department for actually saving her life.
So My Baby
the all in one human with the Massive tree had been walking around her whole life with a life threatening illness. But that is a different matter of which I have ranted
about many times.
* make a note big changes happen now.