Now we are 6...

And just as AA Milne saw the wonder and magic in turning 6 so have we with T over these past 6 years and especially over the past 20 days since his latest surgery.

Yes, Mr Monster has turned 6 and we had a great party on the weekend to celebrate but what made it the biggest celebration of all was watching him tuck into chippies and other foods that he simply has not physically been able to eat for around 9 months and we truly wondered if he ever would be able to eat solid food without pain ever again.

Yesterday I made him his first batch of T friendly bread again in a long time. He ate half a slice with peanut butter for breakfast, ate 3/4 of a slice for lunch that day and a whole slice for breakfast this morning!
He is, once again talking about his 'Bye Bye Pump' party - and trust me, if his recent birthday was a good bash that one's going to be totally off the records!

We saw the paed yesterday for him and, well there wasn't much to say really. I do hate the way different scales weigh differently - GP on Monday said 16kg and 108.3cm, but the hosp scales and measurements said 106cm and 17.4 kg. Funny how the kid can shrink and gain so much over the space of 2 days...
She did comment that she has never come across the complications T has had with his tube - trust him to come up with something rare. The surgeon described it as a rare complication too but seen occasionally. Funny how I said right from the start it was something mechanical, and it was me who actually planted the suggestion of moving the tube in the first place.

We still have a long way to go and it's really not being helped by the fact that the tubing pops off his gastrostomy tube if we run his feeds very fast. I did get him back up to 90ml/hr flow rate today but that still means daytime feeds are taking a long time - 2 lots of 250 mls - and so daytime eating is being affected.
So I'm trying to be patient and see this time as exploring textures again - he did comment, while eating pizza the other day, that his mouth got sore. From his description I'd guess it was actually muscle fatigue after not eating anything that chewy for around 8-9 months. So there is ground to be regained.
We do see the surgeon for a follow up on 17 May and I've got everything crossed he'll say T is healed enough to move to a button again. That has an extension tube which locks into place and so we can progress his feeds rapidly back to his previous flow rates and then seriously work on eating.

I have to get his nurse to agree too - and actually see him! This has been a bit of a battle as it would appear the surgeon hasn't done a discharge form - she's in the public system and we had the op done privately. She seems to be rushed off her feet and since she doesn't have the relevant bit of paper she's not doing the work. T hasn't had any wound checks from her and it took two calls to even get to talk to her after discharge, and I've called twice since then but she's not returning my calls at all.
I know I've done all of this post tube placement stuff before but still, I'd feel happier with a bit of liaison and, heaven forbid, reassurance.


I guess it's an ill wind and all that because the GP has seen more than enough of T's belly!
We've had problems in the past with the surgeon's stitches being very neat, tight and tiny (that why they heal so nicely) and a total sod to get out!
It took two attempts after his first surgery to get them all, it took two attempts after N's surgery to get all his and it took nearly two attempts to get all W's - not because he was problematic but because they took so long.
This time it took 3 attempts before the GP bailed on the whole exercise and prescribed a sedative for the next attempt - for T NOT ME!
Tomorrow we have attempt #5 and the second under sedation as I found around 4 - 5 stitches which we didn't get the first 'successful' time.
I have also arranged to get his flu jab done at the same appointment - seems a pity to 'waste' the sedation since he's so anti anything medical at the moment!

I did mention to the paed that he really hasn't learnt a great deal over this year and is still a long way from being able to read etc. She wasn't concerned and said he'd catch up she was sure. I do keep reassuring myself that if he were a Steiner school kid he wouldn't be allowed anywhere near the written word at this age and you can't tell the difference in their achievement by age 9 or so. He has had an awful year in terms of having the energy or ability to learn anything - what with retching or sleeping about a 3rd of his day away most days.

  

That's a very small snippet of what life's been like for T after many feeds and often twice a day. It was a mild event that day and what you see is only a few moments of what can go on for 30-45 mins.

It is the fact that he is now eating without pain - and having feeds without this kind of endurance event which makes me so incredibly grateful for the surgeon and my persistence, his skills and courage to re-visit a situation and decide to change his mind and try to find an answer. Not many doctors, never mind surgeons, will actually change their minds so completely from a 'I wouldn't know what to operate on' to a 'I'll give this a try, no promises mind you'.

As P has commented in the past 10 days or so - we have our sparkly eyed T back again.
This surgery, although an ordeal, has to have been the best birthday present he could have got and has certainly given me a real Easter sense this year - of a new life for T, new growth and a real new hope.