The saga of the biopsy......

The saga of the biopsy.....

Well, where to start?

Ok...so since last posting, Sam quickly went back into remission after writing.
He continued a routine with his medication and was taking his full dose of ciclosporin bi-daily and a reducing level of steroid (prednisolone) which ran over the next 4 weeks before stopping.
This was all great news and meant that all was back to normal in family and school life for a while :)

We saw the consultant with regards to booking Sam in for a 2nd biopsy to check and make sure that things were all going well and the kidneys were not being damaged in any way by the medication that Sam had been taking.
Generally, with ciclosporin, Sam would take this for 2 years before weaning off. As the wean didn't work well for him this time, the level of ciclosporin has been retained and therefore the second biopsy is required.

As this is only a precautionary biopsy, it was not given priority and was booked in for September.
I was actually quite relieved to hear this, as it meant that the family could enjoy a lovely long Summer together without the stresses of the operation.

September came and the date for the biopsy and pre-op booked in.
The day of the pre-op - and Sam was unwell!
He'd had a cough for a couple of weeks and didn't seem to be clearing it but had been quite well up until now. Today, he started with a mild temperature and by the time he was giving blood, was quite distraught....most unlike him normally!

The following day and we were asked to go back in, as the pre-op test results were showing abnormal readings and Sam needed to be re-tested.
His temperature had now gone....but his cough seemed worse and was keeping him up at night!
That morning we saw Dr Rodd (Sam's consultant at Winchester) to take the new bloods. This was fantastic as he knew Sam's history already. He took the bloods, explaining why the levels may have been abnormal, checked him over and instantly prescribed an antibiotic to get rid of Sam's cough. There was still hope that the biopsy would go ahead.

Unfortunately the cough didn't fully clear up and required a further prescription and the test results.....still abnormal!
More tests and more blood taken a few days later and this time there was a chance that they were testing for something more serious that may be causing the abnormal results.

This was bad news for us.... I understood that there was only a slim chance....but to find out that what you thought you'd been dealing with for years....could now turn out to be something completely different? Was a little stressful to say the least.
After a few worrying days, we received a call from the nephrologists saying that the biopsy would be able to go ahead in another month and that the test results may have been jeopardised by Sam being unwell over the time they had been taken.
A little confusing to be told that he may have a more serious condition....or he had a cold? I did find that a little hard to understand....but we went with it and Sam in the meantime was recovering well.

So now we're almost upto date....

It's now early October and the new biopsy date and pre-op a week prior had arrived. It was now set for 8th November.

Mid October and Sam's behaviour started to slip!
We started to see him quickly slide into chaos and tantrum at home...lots of sibling bickering and Sam's school had to speak to me on a couple of occasions for him being "naughty" and losing concentration and not listening.

Immediately this rang alarm bells to me!
After all this time...at last...I saw a pattern!
The last time his behaviour slipped like this was a couple of weeks before his last relapse.
As much as I didn't want to blame his condition (especially if it was just a case of him having a naughty phase!!) I couldn't ignore the similarity to the previous episodes.
I'd remembered the last time, looking back and thinking "that's why he's been acting like this!"...and then feeling immensely guilty for keep telling him off!
Clearly whatever is going on inside his body, takes so much of his concentration, that the other things slip.

Well, as expected a week later Sam was off school with a mild temperature and immense tummy pain - again!
On the 4th day of pain, we dipped Sam's urine...and we were right...4+!!
After 4 days of 4+ dipsticks we rang the hospital, went straight in and were prescribed his usual steroid and antibiotic combination.
Strangely, the following day, Sam's dip showed only 2+, so I made the decision to hold off starting the steroid for a couple of days.
Sam remained at 2+ for a few days and even dropped to a Trace and a couple of 1+ dips....which excited us....but this quickly declined back to 3+ and again 4+ over the last couple of days.

So, steroid and antibiotic re-started, ciclosporin still going at full dose and....the cough!...it's back!
Today, Sam is looking very puffy (over the bridge of his nose is initially the worst area) and a little lethargic (for him, anyway!)

And...the 2nd biopsy date.....cancelled again!.....and the saga continues........


Thanks to all those who support me and the family through these times :)
It's really hard (emotionally more than anything really...), am feeling rather subdued and fragile today......so lots of love to everyone who thinks about Sam and sends their love and good wishes whenever things get difficult :)

I love you all - and you know who you are :)

Thanks for reading as usual :)

Sonja xx