[ Post a Response | ECHO Dialogue ]
Posted by Pippa Duffy
on July 15, 2009, 23:37:32, in reply to "Re: Leo's Biopsy Results"
86.161.168.18
Hi Lara and Amanda
Thanks for your posts, it always helps! I have been a bit wobbly over recent days. It doesn't take a lot for isolated events/comments to build up into something significant that can knock me off balance for a bit, but I always find my way back somehow, as we all do! (Maybe we should write a parents book about coping strategies and raise money for ECHO?) I was watching a home improvement programme tonight, and the guy on it was talking about his daughter being born with Tri 21/DS and he was talking about 'lost hopes' of walking her down the aisle etc. and it was clearly so painful for him. I too have had these thoughts about what may or may not be part of Leo's future, but have come to accept that regardless of what he may not have, he will always have our unconditional love and that is the very best springboard for everything else. But somehow, seeing this other parent's obvious sadness, even though I could also see how much he loves his daughter, was really hard to watch and I felt my own tears welling. I so wish that we, as a society could just love our children and give them their birthright - to be able to 'be' without being 'judged' against standards. I know that this sounds a bit idealistic etc. and that reference points are also useful, but I know that you understand what I'm trying to say..... I had to stop myself from running upstairs and picking up my boy and holding him oh so tight, and raining (even) more kisses down on him. And of course, because of feeling wobbly, the darker thoughts crept in around his surgery etc. So I guess that my posting tonight is one of my ways of clearing the dark clouds and making space for the calmer feelings to return!
Amanda, my initial posting probably is a bit confusing if somebody doesn't know what Hirschprungs is. Here's a 'pocket version': when the foetus develops, nerve cells grow down the body following the neural crest. Sometimes, something interrupts the development, and the nerve cells stop before they reach their full conclusion. This arises in conditions such as imperforate anus, where the gut finishes 'short' of the bottom, or Hirschprungs, where the lack of nerve cells means that the gut isn't mobile, i.e. food/waste matter passes down via peristalsis and smooth muscle action, but then the muscle doesn't move (because it's not being activated by the nerve cells) and so everything just gets bunged up. Hence, most cases of Hirschprungs are picked up at birth because the baby has great difficulty passing meconium, or is completely unable to. Leo did pass meconium, but has had ongoing inflammation of his colon, lots of pain, contipation/diarrhoea, failure to thrive since he was discharged from Evelina. In Leo's case, it's not 'actual' Hirchprung's because he does have some nerve cells, but those that he has are apparently extremely underdeveloped, which makes it clear why our local hospital struggled with their pathology report - the cells are almost unrecognisable as nerve cells. And the arrangement of the nerve endings are very much like Hirschprungs would be - hence they're calling it a 'pseudo' version. I think this means they'd cut out the affected section and then join up the healthy bowel to the rectum(called a 'pull through'). But this all depends on what the GOSH 2nd opinion says. It all boils down to whether or not this situation is likely to change for Leo. If there's a chance that his bowel might mature, then obviously it would be better to hold off on any removal, but if this is it, then we need to think about what we're going to do and when. I just feel worried because I can see that even with his colon 'out of action' because he's got the stoma (i.e. everything flows out of the opening they've brought to the surface of his tummy before it gets to his colon) he's still in quite a bit of discomfort after eating. So it suggests that his gut generally isn't great - part of the Tri21 recipe probably. I think the waiting is always the hardest part - and I tend to always try to work out every scenario, so that I'm prepared for whatever comes. Which kind of works, but is also exhausting! I'm so different to my husband who's a 'deal with it IF/WHEN it happens' kind of person!
Anyway, I rang and spoke to a nice 'stand in' today who's going to see if the report's come back yet, so I'll update you as and when.
Thanks for the hugs for Leo - I'll pass them on in a minute when I give him his nice 'sleep well' bottle of Infatrini. He's finally sleeping through until 5 from this last feed, which is a real bonus! 6 hours uninterrupted sleep feels like a luxury (oh how my expectations have changed!) xx
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