Thursday, 4 September 2008

Button, button, who's got the button?

Placing Little Fish's PEG was an experience I do not ever wish to repeat. The operation itself went well, the individual nurses who actually worked directly with us looked after Little Fish well. The rest was a nightmare from start to finish.

Since then, we've had five potential dates for the switch to a button, combined with minor ops to hips and feet.

So I wasn't really expecting the surgery to go ahead today.

We'll start with yesterday. Sadly, Tuesday's bus experience was not repeated, and by the time school was due to start, there was still no sign of the bus anywhere. So muttering rude things under my breath, I loaded both girls into the bus and threw Mog out at school before taking Little Fish to her videofluoroscopy appointment. This is one of the nicer appointments we have - it involves eating different bits of food and drinking different drinks whilst an x ray video watches what is happening. Painless and full of yummies, that's my kind of an appointment.

Home to pack, then collect Mog from school and off to Helen House. The original plan had been for us all to be based at Helen House for the next few days, however there are presently two very sick children there, and so no space for us. No point in being annoyed by it; we don't get our break because two families are saying their final farewells to their children - that really should take priority. They do however still have space for Mog, so we left her there with a team of people ready to care for her and a hefty dose of antibiotics for the chest infection she managed to brew up over the course of the day, but let's not go into that.

We had what I thought was a good chat about Mog's needs. I explained her new feeding regime (not terribly new, but new to the carer in question), and various other bits and pieces. I then watched as the carer attempted to do one of the three things I had just told her not to do, one of the things she had agreed not to do. I pointed this out (gently), and we had a conversation about it again. I then watched her do the second thing we'd talked about. Sigh. We had a longer conversation. The doctor came round and diagnosed Mog's latest chest infection - I suppose it's about time she had one again. Started her on new antibiotics, found a better wording for the messages I was trying to get across about Mog's needs, and I left with Little Fish, confident that Mog would be safe and cared for over the next few days.

Fast forwards to this morning. We arrived on the ward and were shown to a lovely little cubicle. Little Fish was first on the list, so by the time the many doctors had done their pre-op rounds, we were being called down to theatre. Down was a misleading turn of phrase; having caught the lift downstairs we then needed to go back upstairs to our original floor to find the surgeons. Oops.
One sleeping child and definitely time for my breakfast. A solitary mushroom made it past my lips when the phone rang - could I "just pop back to theatre for a minute please?" Panic, panic, but turns out only confusion over the consent form; had they adequately mentioned the fact that peritonitis was a risk and did I still agree? Yes I did, all signed, one child proceeded to be chopped about and I returned to my slightly cooler sausages.

Two hours later and Little Fish was back on the ward wide awake and demanding dinner. Now that's my kind of a girl! Sadly the Feeding Therapist was also on the ward with the results of the video swallow. And with the news that Little Fish cannot be allowed to eat solids. Purees yes, and she will give her some feeding therapy and is confident that eventually her eating skills will improve. But for now she is aspirating mightily and dangerously. So no more chips, no more biscuits, no more pasta or pizza or any of her other favourite foods. Back to slop and goo and slime. This is not going to be a popular move. I am already tired at the thought.

Little Fish has two fibreglass wellies. Boring white plaster, so she and the play specialist decided to sticker them up a little. Well, that was the plan. Little Fish decided the stickers ought to be elsewhere.Thankfully for the play specialist, the surgeons came around shortly afterwards and agreed that Little Fish did not need to stay. So we are now back home. She is asleep. I will be heading that way shortly. I am still a bit confused as to why last time we ended up on PICU for a night and this time we don't even have to stay on the ward. Confused, but not complaining!



Tina said...

Glad you are home. Sorry to hear about the feeding I am sure Fish is going to find that hard!
hugs to all of you

Alesha said...

So sorry to hear about the aspiration issues. Funny, but Isaac always aspirates thinner things worse than solids. Maybe purees are considered thicker than solids??? I don't know...

Isaac is being scheduled for an upper GI and emptying scan. [sarcastic] Whoopee!

The poor baby's tummy still has food in it that was passed 6 hours ago. Not good! And very yucky in his little tummy!

Is it morbid to say I feel a storm brewing here? And I don't mean the weather, although we've got plenty of that going on too!!!

As you are - I'm feeling a little overwhelmed by the forecast of battles soon-to-come.

Praying LF heals well and quickly, and that Mog's infection clears up while she's in respite.

Good night!

Tia said...


So do Little Fish and Mog. Mog has no drinks at all and only tastes of soft foods. The reason Little Fish can have sips of drink is that otherwise she drinks from her gastrostomy tube; better to have clean water than stomach juices! And the purees vs solids - purees don't need to be chewed so she can just slide them down - they can be quite thick. But food like chips (Fries!) or stuff with a mixed texture like casserole is dangerous to her as it is not so easy to control.


MOM2_4 said...

So glad the surgery went well without any extra "excitement". Between fibreglass wellies and a new diet I am sure you have your hands full. Praying for you all.

Praying Mog's time at Helen House will go well and that her chest infection will clear up quickly.

Hugs & Prayers!!

Robyn said...

and relax...:)


Claire said...

I hope little fish doesn't mind too much about the change in her diet. Thank you for the tip, ages ago about angel delight "ice cream." Since then after a lenghty web search I have found a premaid version which can be ice cream or pudding. It is called Magic Cup and comes in 4 flavours. Maybe your kids might like it. Their moulded puree fruit and veg look pretty good too. But I bet they are rather expensive. See what you think.


PMDPeter said...

Glad that Little Fish came through Ok. I like the idea of forehead stickers (clever girl)
We changed Ak's diet to blended before the gastro due to not chewing but as you know he never complains and will accept whatever we do. His VF was to check for inhalation of liquids which is why he is nil liquid by mouth.

Hpe Little Fish doesn't complain too much over the changes.



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