Red is the colour that Ivy’s blood cells should be. Big fat juicy blood cells, plump with haemoglobin and oxygen. Red is the colour of blood that she may need now to correct this mess.
Red is the colour I see when I can’t get the doctors to help my girl.
Yellow was the colour of her skin and whites of her eyes for the last week. A whole week without anyone wanting to help us. A whole week of worry and stress. (edited to add, I tell a lie, there was one kind registrar and many kind friends).
Yellow, the colour of cowardice.
Yellow is the colour of the vacutainers that finally collected Ivy’s blood to give us answers yesterday.
Pink is the colour I want my baby’s cheeks to be. Flushed with good health, not a fever. Pink is the colour I want on her bottom, not red, blistered burnt skin.
Pink is the colour for euphoria. The feeling I get when everything is right with our world.
Pink is the colour of the walls in the pathology unit at the hospital.
Blue is the colour that my daughter turned when the Dapsone caused her blood cells to be ineffective in carrying oxygen.
Blue is how I feel when I can’t help her, when I have to rely on others to make her feel better.
Blue is how I feel when everything is out of control.
The paed is still running for his life but he called me, from his mobile, to inform me that Ivy now has haemolytic anaemia.
For those of you who missed the Dapsone post, here is a quick summary of this pleasant side effect…
Haemolysis is the breakdown of the red blood cells. Basically the red blood cell is destroyed and can’t carry haemoglobin (iron), and you become anaemic really quickly.
Ivy has gone from 132g/L on April 8th to 96g/L today, so officially, she is anaemic. We can add white to the rainbow of colours my daughter’s skin has turned. (Yes, I know technically white is not a colour, just play along with me here).
White is the colour of fury - towards myself for giving her the stupid Dapsone in the first place. I should have known.
The paed is not sure if it is going to get worse before it gets better but he told us to pack a bag before Thursday’s appointment just in case.
Posted on April 23rd, 2008 by Tiff
Filed under: Health, illness, I hate Dapsone club, doctor related posts
That was soooooo helpful and supportive of him.
There will be no trip to hospital this week. I say so!
Besides, we have a date on Friday, remember?
I think you can add black for the looks you will be giving the paed…
Good luck on Thursday.
Aww hun, I really hope you kick the paed’s arse when you see him next - he should never have mentioned the Dapsone to begin with.
((hugs)) to you all, I hope Ivy’s cheeks are rosy pink soon xx
Now I am sitting here humming the “I can sing a rainbow” song.. and singing it with all the colours muddled up as well.. Thanks Tiff..
It is not purple and orange and green is it???
*Goes looking for the ABC song Book…*
xxxKim
Time to draw the line in the sand and tell the paed how far over it he has stepped in his care of your beautiful daughter.
Ask for a referral to another paed who is willing to do the work expected of him/her and is not going to view Ivy as “an interesting case” or simply bugger off without leaving an alternative paed to contact.
Get on the grapevine and ask around; other parents will be quick to tell you of the good, the bad, the ugly and the few who still bulk bill.
The purple, orange and green will be the bruises all over the paed by the time Tiff’s done with him!
Oh I really, really, really, really hope that you will be in the pink very soon!
Oh my! Your poor little girl - and damn that paed or his bad decisions. I truly hope everything improves IMMEDIATELY and that you are both feeling better. My thoughts are with you.
Shit. I can only once again tell you how sorry I am that Ivy and you are having to deal with this endless crap, and that you are in our thoughts and prayers.
Tiff,
I hope and pray that the appointment with the paed goes well tomorrow. May he truly hear what you are saying and be willing to either give Ivy the care she needs and deserves or else I’m with the others who think it might be time to go looking for a new paed for her! My thoughts and prayers will be with you all day tomorrow and I’ll look forward to an update soon.
You will NOT beat yourself up for this.
WILL NOT.
Period.
bring on pinq - and I hope the Paed has answers. Sorry i don’t ! Hugs
My sincere and warmest best wishes for Ivy to fly through this and be the healthy little girl you have always wanted.
You have my greatest admiration for not only surviving these trials, but for helping Ivy be the best she can be under the difficult circumstances she has been dealt.
We all have to put our faith and trust in those who supposedly specialise in these things….. please don’t blame yourself.
I found myself running the rainbow song through my head, then remembered the pot of gold at the end of the rainbow, I sincerely hope you get to the pot of gold soon. Hugs to Ivy and demand the paed gives you the number of an associate to contact whenever he is “out”. I’m sending wishes to all of the Gods and Godesses in all of the Heavens. Please let Ivy be well soon.
*insert expletive here*
hugs my lovely. I have nothing to add just want you to know that I am here and supporting you.
I wish I wish I wish I wish I wish I wish I wish I wish I wish I wish.
And I’ll keep wishing until you tell us you didn’t need that bag after all.
Oh Tiff, poor Ivy, the poor baby!
I don’t know if you’ve got other options with respect to another paed … or at least as someone else suggested a really good talk with this doctor about the “lack of ” standard of care. For a whole week, that’s ridiculous.
I so hope she comes out of this ok and that she doesn’t need the bag again. Grrrr….
hugs to you
crap.
I’m with Jayne.
huge hugs to you, I hope you get something sorted out soon.
I’m praying just as hard as I can. (*HUG*)
I’m so sorry, Tiff. As always I’m thinking of Ivy…every day. I’ll send an extra prayer up for her tonight and hope that she will get better and skip the ‘worse’ part.
I hope Ivy is feeling better soon.