Well here is the update -- I am calm enough now to actually sit & type this..well I hope anyway.
Dr Lewis rang yesterday and the news was grim from the outset. His Creatnine is sitting at 586 -- now for some background on that level. For a normal ADULT the level is around 120....so get the picture of how bad it is on its own? Creatnine is the level they check for the kidney function. His Calcium is 1.2 -- this is a major concern because for them to do the surgery he needs to have that sitting around the 2.0 mark...otherwise they run the risk of him becoming catatonic on the table. His iron is almost non existent so he willbe having an Iron Transfusion whilst in hospital next week and afterwards will have an injection weekly. His Phosphorus is sitting at around 1400 -- it should be 70!!!! So are you getting the picture of a very unwell boy? So next week is surgery day....on the Thursday we will be admitted into hospital and he will have surgery on the Friday to have the cathater (sp?) and his gastrostomy reinserted. We will stay for a couple of days to make sure its all ok then home again the Monday I believe. 3 weeks after that we go back for a 3 week stint to learn the process of dialysis.
It will not be an easy road by any means. It is going to be a hard slog and that in itself should be worrying me but it isnt. I have the love & support of some amazing people all of whom I would be lost without. I am not oging to single them out because the list is long. BUT I want each & everyone of them to know that I love them dearly and thank you so very much for being there especially at the moment. You have all listened to me rant rave & cry over this....you have all made me laugh so much my stomach aches & I constantly call for oxygen...THANK YOU and I LOVE YOU ALL!!!
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5 comments:
Terri...know that I am here for you guys...my renal specialist always tells me normal is 60 to 90 (MAX!!) so for him to be 586...wow..he must be feeling crook..and if his iron is so low...wonder he is sleeping so much! I feel for him..I really do...he has a long haul in front of him..as you do hun...be prepared it may tear you apart as much as him....sending much love and good vibes your way...remember...if you need any advice...tips...hints...anything..let me know xxxx
my thoughts and prayers are with you terri! i don't know what it is like to go through this as a mum or as a patient, but I will be thinking of you every day and sending positive vibes to you and your little man!
I can only imagine what you must be going through - will be thinking of you and your family during this time.
Hugs ... my thoughts and prayers are with you and your family.
My thoughts are with you and your family at this time
hugs
Marelle
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