Thursday, 9 October 2008

A stomach post.

We've been cooking these past few days.
Little mini loaves of bread
which rose beautifully
and were only slightly overbaked. Little Fish can't eat those.
Seedless blackberry jam. Little Fish can eat this, but not in the quantities she'd like.

And then Little Fish decided that we needed to make a cake for Grannie and Grandad .
She wanted to make a "Nanny and Daddy Cake" but refused to explain what that might be. Oh, except to state that it should be blue. Since Little Fish isn't really terribly clued up on her colours, we compromised by using a blue plate. And made a cappuccino cake. Would a cake by any other name taste as sweet?

Having successfully avoided the truly tedious freezer restock and Autumn cleaning procrastinated for a couple of days, we finally got around to cooking up some pots of glop for the girls.
Cauliflour and broccoli cheese here, tasty. And below, roast chicken.
I'm not convinced totally pureed is the way to go, but I think I prefer the second option. I'll take the bread sauce anyway. Little Fish's therapists want her to have her meals pureed in their component parts in order to give her different tastes at each meal. This is great - it gives her the opportunity every toddler has to sift out the greens and spit them on the floor and refuse them. Would someone like to tell me how that's a good thing?

That's for the inside. Here's the outside. Two gastrostomies.
At the top, Mog's beautifully presented Mini Button. It lies flat against her stomach, it doesn't tug, it stays connected, the valve is handily broken ensuring that as soon as we pop the lid off she winds herself nicely with no need for syringes. It's a definite bonus; the buttons should be built that way.

At the bottom, Little Fish's ever manky Mic-Key Button. Now I am no expert in buttons, especially Mic-Keys, but surely it must be too long? It shouldn't have that much leeway - once you attach an extension tube it sits a good centimetre or more away from her skin. I'm thinking that in itself may be contributing to the soreness. There's overgranulation. There's scabby gooey bits which soak off nicely at night and are back again, with friends, in the morning. There's such soreness in it that she sobs as soon as she sees the syringe, and if she isn't slapping my face she's pulling out her own hair. This can't be right. And yet, this photo, that's the best we've seen her stoma since she had the original op in January.



PMDPeter said...

Little Fish'e is looking a bit like overgranulation.

Yes it does look too long. Normally gap should be around 3mm at max.
We have gone the other way and it is too short, and according to the nurse specialist at the hospital this is causing what I though was granulation tisue inside the stoma but she says it is not so. It is due to having a MicKey that is too short. So now waiting for a longer one to be sought.

swift said...

It does look a bit lose, possibly...although I know some people say it doesn't make a difference. Have you tried asking if the balloon has it's max amount of water/saline/whatever you use for your girls? (I know different PCTs suggest different things). I know mine can have 5-7.5 ml (it's a Freka), but I use 6 ml.

Alesha said...

Tia, Isaac's Mic-Key sits just as loose as that. Although if he's laying down, it does not stick up by itself. It lays flat.

However, if you tug on it, it will come up even further, but we try not to do that obviously.

How much water are you putting in the balloon? I start out with the largest amount they suggest, and only stop filling it when I feel a LOT of pressure pushing back. Maybe LF's is not tight enough on the inside.

Isaac had granuloma larger than this one, and we used that lotion that somebody googled the other day, and the lotion shrunk it right down.

I'm so sorry it's causing her pain. We had a little one come to our therapy clinic with the same painful granuloma. I suggested they ask their pediatrician for a steroid cream. They did, and it improved completely.

I'm sure ya'll have something steroidal over there that would work, although possibly not the same one that we use.

Well, fwiw, that's our story. So sorry LF's hurting so much.


Michelle said...

About the buttons, the red one looks like Emily's when she has a staff infection. However, Emily's button looks like that when she wears a Mickey.... She HAS to wear a Nutriport. Have you tried that type? Here's the link:,68067:0

Michelle & Emily

Tia said...

Unfortunately we don't have any choice in the make of button we use. When it's time for this one to be changed then we can switch to a Mini, so at least both girls will be using the same thing and I will only have to have one set of supplies.

We've used steroid cream with antibiotics, steroid cream without antibiotics, steroid eye ointment, silver nitrate, all sorts of things. The only thing which makes a slight difference is having a sheet of lyofoam (a one way foam used for oozing ulcers) underneath it.

She does tend to grow staph most of the time but at her last swab it was totally clear. Obviously that only means there wasn't any at that particular moment in time and she could have reinfected the following day, but it still looked similar to this even without the staph. This is in fact the best it has ever looked, but it still looks (and feels) horrible.

Water in the balloon - there's about 10mls in there at the moment which takes up a bit of the slack but not much. For some reason the surgeons put in a button with a 2.7cm post. Mog's is 1.5. I know Little Fish is a little chunkier than Mog but I'm not convinced she needs all that extra space. Hopefully our nurse is coming out next week with a measuring device and a set of spares, and we'll be able to find one to fit properly.

The current theory is that her body is just simply rejecting it. It doesn't want this foreign object anywhere near it. This isn't good news as she's going to need other stomas too in the next few years.


Anonymous said...

The idea of multi-coloured cakes wasn't put into LF's mind by a certain CC was it? She helped Jack make multi-coloured fairy cakes last summer - to him purple/blue and green cakes are the way to go!!


ps that is purple green and blue all in EACH cake!

Tia said...

I like your thinking but unfortunately I don't think I can blame CC for this. Hmmm I might still try though!

I like Jack's cakes - very pretty. Although tell him brown and white are the way to go - half cocoa half vanilla. Any excuse for chocolate.

Doorless said...

The MicKey is too long and that will cause over granulation and irritation. It should fit like Mogs.
It probably would not be so irritated if you had a kiddo that doesn't move around a bit. Mikayla's was way too long and it got red and irritated and then I changed it down. Looks great. Also contrary to what people think adding more water does not shorten it up. Try it on one when you change out and measure and see if I am right!
We have cloth discs that fit around the sites and they wick the moisture away from the skin. Mikayla always had irritation until we changed over to them. I would be glad to send some for you to try. They also help to pad the skin between the button and skin. Split 2X2's only kept the skin moist.

Robyn said...

love all the cooking! LF mickey does look like its sticking out too much...but then im no expert.poor thing
Mogs is beautiful!! :)

Daddy Cakes® said...

We don't know what Little Fish can or cannot eat, but we would be glad to send you some "Daddy Cakes" - and our Blueberry Bonanza Blast Pancake mix does turn a little shade of blue! Feel free to go to our website and send us an email from there with your name and address...we will send you out some delicious Daddy Cakes® and you & the nutritionist can decide if these will work for LF.
Have Fun!
Daddy Cakes®


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