One thing about life is that change is unavoidable. Some changes we desperately want don’t seem to happen, or they don’t happen fast enough. Other changes happen and we don’t want them to. We aren’t ready. We wonder how we will cope.

More than one such change happened yesterday. 

A tissue viability nurse came to review Brendan Bjorn’s pressure sore area yesterday. In addition to the 3 sore areas at the IT point on his left side (see this blog for details), in recent months his skin is also beginning to break down on his scrotum. No one knows why. I’ve tried to think of every possible reason – from his nappy rubbing the area to possible chemical changes in his urine or stools due to puberty to pubic hair causing irritation.

Yes, this is a conversation of a personal nature, but I share it because this IS indeed part of our journey. This is indeed an unwelcome change we now have to try and resolve.

One change will be no more baby wipes. After 15 years of using them with no issues at all, I am to try using cotton wool and sterile water only for every nappy change. Frankly, my first thought was the increased work with that change. I’m still thinking about it, to be honest. Will I do it? Yes, of course. But when carers such as me are already exhausted physically and mentally, adding to the workload is a daunting proposition.

And so I sit here this morning contemplating change.

There are other changes to make, too. No more disposable incontinence pads underneath his bottom. Cotton only. That means 2 to 3 times as much laundry. Sorry to disappoint anyone by saying this, but yes, more work added was my first thought.

And yet another change will be trying an external catheter system (also known as sheath or condom catheter) to catch his urine into a bag rather than it ever touching what is clearly becoming his increasingly sensitive skin. It will go on like a condom, have tubing going from the tip which leads to a collection bag. While the nurse was explaining it to me, my mind raced with thoughts. Out of my mouth came, “Oh God, another tube line to deal with.” Sometimes my filter doesn’t work as it should. Based on her reply to me, it apparently made me sound like I didn’t want what is best for my son, but of course I do and of course I will try it and of course…I’m just tired is all.

Any more changes?

Next week Brendan Bjorn will be transported via ambulance to the seating clinic so he can be moulded for a new wheelchair seat. Don’t get too excited reading that; it will still be late July before it is completed and we are free to get out of the house. Half of Declan’s summer holidays will be over by then. It will be more than half of 2019 that we will have been confined to the house by then.

Like I said above, some changes can’t happen fast enough while other changes happen when we don’t want them to. Such is this journey…