Since finding myself in this very new and unknown territory with Finn’s medical condition, I discovered Facebook support groups – you name it there’s a group for it!
After some searching for the right groups, I’ve found the most relevant ones are ‘Feeding Tubes Australia’ and ‘Parents of Kidney Kids’.
Not only have I found these community groups to be super insightful, it’s also really comforting to know that we are not alone. Hallelujah.
While Finn’s condition is extremely rare (there is only one case this severe every few years in NSW), it turns out there are other parents in almost exactly the same situation as us – with a baby boy who has posterior urethral valves, end stage renal failure, dialysis, transplant, feeding tube, etc.
There are also so many other unusual medical conditions which require feeding tubes and can cause kidney failure.
I’ve been able to ask questions to these community groups that the doctors simply aren’t able to answer. When it comes down to real life day-to-day logistics with feeding tubes these guys know all the tricks.
And it’s absolutely magical to hear when a child has just received a new kidney and is now thriving! It makes me feel extremely positive and excited for Finn’s future.
However unfortunately it’s not all rosy. I’ve been exposed to numerous posts that have scared the absolute crap out of me. Sometimes ignorance truly is bliss!!
Last week I was sat in the hemodialysis room while Finn was having a session, and what pops up in my FB feed… a rather shocking photo of a hemodialysis permacath covered in blood due to a blood clot (this is the permanent line in Finn’s chest where the blood goes in and out) – it was not a pretty sight!!
Upon mentioning this to the nurse she advised me to stop looking as it’s not healthy to be exposed to all the instances where things have gone wrong, especially because every case is so different. And I think she’s right.
Last night a post popped up in my feed from a woman whose daughter had a kidney transplant a few years ago. Now she is now 19, dropped out of college, met a boy, smokes marijuana and stopped taking her anti-rejection meds. She has recently been hospitalised to save her kidney, but still won’t take her meds… she says she is an adult and can do what she wants. OMG, her poor mother.
Cue mind into overdrive… this literally kept me up for half the night worrying what will happen when Finn gets older…
How will Finn react to taking all his meds when he grows up? What will happen when he reaches his teens?? Will he rebel and decide he doesn’t need to take them anymore???
For a transplanted person the anti-rejection drugs are your lifeline, they ensure that your donor kidney continues to function in a foreign body and keeps you alive.
For now, we don’t have to worry about this because Finn is too young.
I can only pray that in 15 years time there will be a medical breakthrough such as bionic kidneys which last forever and don’t require any anti-rejection drugs at all. Now that would be nice.
So as you can tell, I have some mixed experiences with these support groups. On one hand they have been great and on the other they have given me nightmares. Maybe I’m too sensitive, or maybe I need to read them less.