A Change In Plans...Big Surprise

I had plans to post another "Blankie Story" tonight but I am just too keyed up and annoyed.

It's been a long day.  Long story short B doesn't have his PICC line in, it got cancelled.

Hanging out

The longer version is that Dr.Stockdale cancelled it with the hopes of starting to use the g-tube today and building up to his full (continuous) feeds over the course of three days.  The 'hope' is that his regular IV holds out until that time to continue to run the TPN (to compensate for calories).  I get it, I see her side and where she is coming from and even agree somewhat BUT when you have a 'plan' and it changes dramatically it is hard.

I have to respect her decision (yes I would have fought it if I didn't think it was slightly possible) but it is hard when I know Dr.V so well and she knows B so well.  Dr.Stockdale did say that she might be eating her words in two days....it might come sooner then that.

B's g-tube has been doing okay all day, not too much 'leakage' (he's only getting 5mls an hour) and he did have some personality again.  He is STILL not moving, he has no energy and he is STILL losing weight.  It breaks my heart to hold him and be able to trace every bone in his body with my fingers...awful.

The 'eating of the words' might be coming tomorrow if I am right (which I think I am and is why I am so annoyed).  I came in tonight and took a look at his g-tube site and it is red above it.  It is turning RED where it all started, in the scar tissue over his g-tube.  All of this started with the scar tissue turning red, then swollen, then bursting.  It isn't very swollen yet but it is red and to an 'untrained eye' (who hasn't been here for the past 10 days) it wouldn't look like much.  Which is what his Nurse said to me tonight when I pointed it out.  I asked to speak to the Resident and got told she'd talk to the Charge Nurse...which is fine, there are 'protocols' after all.  His Nurse (who hasn't had him before) asked me to show here 'exactly' what I was seeing.  I showed her the redness again and got looked at like I was imagining things.  She's not been unkind at all, the opposite actually but she doesn't believe me and that sucks.

The annoying part is that the Charge Nurse didn't even come in, I got completely brushed off.  I was told that there is nothing that the Resident would do for the night and that I would have to wait until morning and they would re-evaluate it then.  I HATE being brushed off.  I know what I am seeing and I know what is right and what is not on my child.  B is rubbing at his tube (which is what he did when all of this started) and he is flinching when I go near it again.  It hurts.

I got offered calmoceptine lotion to put on it, which would do nothing, and tried to explain (yet again) that the pain is on the inside...sigh.  I am torn now, do I stop the feed and be 'The Paranoid Mother' OR do I let it go overnight and risk it being more painful for him in the morning (but then at least it might be more 'noticeable')??  I don't know.  Damned if I do and damned if I don't tonight I think.  I hate to cause him any discomfort but I also need them to know that it is real and it is happening.

Could I be wrong?  Sure, of course and if I am then I'll eat my own words but if I'm not then we've lost yet another day of healing AND he'll still need the PICC line put in.  Can you see my frustration?  My son is shrinking before my eyes and it is so hard to see him not moving.  He's got no extra energy and it is awful.  I feel like I am helping him starve...it sounds harsh because it is.

Who knows what tomorrow will bring...maybe a PICC line or maybe just a paranoid mother admitting she's wrong.

The 'good' news is that I think I may have found a g-tube (that is only available in the US) that might work for him and the attachments that are available in Canada fit it too.  I would have to pay out of pocket for the device but it will be well worth it if it works!  I met a new friend tonight who ordered one for her son through a medical exchange and has loved it.  She was so kind to chat with me and to take the time to talk about their own journey with the g-tubes.  There is nothing like meeting a fellow parent with things in common that only another parent with a child like ours could possibly understand!

So, as always there are positives to the day but I'm still in an annoyed mood.  It could also have to do with the fact that it is 11:30 and B is wide awake.

 

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