School holidays are drawing to a close. I have really enjoyed this break. The last two holidays I was just so exhausted and grumpy from school that we stayed home in our pyjamas most days! This time we have had some warm weather and lots of friends over to visit. It has been lovely and relaxing. I think the coming of spring is also lifting me out of my winter slump.
The only appointment we had these holidays (I know - just one - what a luxury) was at the kidney specialist. Ashlea had bloods before hand which was traumatic as usual. Fortunately we had another good blood collector who got the vein first go. It didn't stop Ashlea from screaming blue murder of course. She started out with sobbing and saying "Want to say bye bye", but when that didn't work she went for all out screaming. Loud, enraged, top of your lungs screaming. You can imagine what that does to the rest of the kids in the waiting room. We come out of the pathology room and all the waiting kids stare at us with eyes as big as saucers as they wonder what on earth sort of torture is going on back there with all that yelling.
The numbers (for my records) are:
Her phosphate is too high apparently, but a tweak to her feeds should fix that. Also her alkaline phosphatase is still sky high (1329 instead of 325). The doctor thinks that is coming from her bones rather than her liver as all her other liver enzymes are normal, and she does have diagnosed bone disease from her kidney failure. The doctor is going to follow up with someone who specialises in this area and let me know if he thinks we should investigate further.
Her creatinine was also 20 points higher this time. I don't know if this was a one off jump up to 243, or the beginning of another increase. It of course triggers my worry button. What if this is the beginning of her creatinine climbing. What if she is going to move to End Stage Renal Failure sooner than we thought? What if, what if, what if - with the biggest what if always being... what if she dies. Why does my mind still jump straight to that fear even when things are going really well for her? It obviously still lurks at the back of my mind.
I really try and avoid thinking about Ashlea's kidney failure as much as possible. I can cope with all the disability stuff, but the kidney stuff is BIG. It is a BIG DEAL to need a kidney transplant. It is a big deal to give someone a kidney. It is too big for me to think about right now, so I am going to go back to ignoring it. I put it on the shelf between appointments and am quite successful at not thinking about it. It is just when we have check ups that I am reminded.
Kidney failure is a big deal.
I'm putting it back on the shelf now. Way, way at the back.