T's feeding therapy

Well, today was supposed to be the rush, rush day with T seeing both the speech therapist who is going to work with his eating, and getting the biopsy results from the surgeon.

However....we have a junior doctors' strike today and tomorrow and I got the call from the surgeon's office yesterday to put off T's appointment until next week - I guess it's all hands on deck!

I don't mind really because I was going to have to watch the clock carefully and this way I could make sure we got basic info right. The therapist was really good and thorough. She said that kids who have things like reflux which make feeding unpleasant often learn to self-limit eating and won't increase volumes.

T is apparently eating a good range of textures and his mechanics are fine - it's just the volumes.

We really need to sort out his reflux and then she sees a definate need and real role for her after that. She's going to talk to her seniors about T's feeding post op and the pros and cons of a feeding tube for a kid like Thomas. She said she'd get back to me in a few days and that she'd write a detailed report on T and include a plan for him. She's going to talk to the dietician too and make sure everyone gets a copy of the report. I had my list of contact details for everyone involved with T so she can easily circulate everything. I also gave her a copy of the sheet with our concerns for T. She took photocopies of all of this month's food diary as well.

She did say I was already doing everything she'd recommend I do - including getting him involved in cooking (not that he eats it afterwards!) and that he is still fairly positive about food which shows how well we've done over the past 3 years. She also laughed at the surgeon's idea that once we operate he's just going to start eating - not a chance! Once we've fixed his reflux we've then got a long road of trying to fix his attitude to eating and volumes.
But I feel like we might get somewhere finally with T's eating - which is nice since he's eaten stuff all since Friday!

Eleanor.

We survived the first step in the process!

Yesterday was better in some ways than I’d have hoped and worse in others.

The #%$# anaesthetist called at 6pm the night before – end result I burnt dinner talking him through T! He told me he was going to put T under through an IV – so there went all the work I’d done in playing with a mask all week! Possibly just as well as on Wed T had taken to handing it back to me with a cute “No, ganks.”

The hospital has a tiny car park – and I got a park right by the door so I figured that was a good sign! 30 mins into it all and T decided it was time to go home. It was heart breaking as he trotted out one of his very rare 3 word sentences “Go home please”. He lost the plot when they bandaged up both hands for EMLA, but took his pre med well :-) the nurse was amazed, she thought it’d be the other way around!

He got his long awaited “Ride bed!” to theatre – and flipped! I think he realised that something really big was about to happen and he got scared. He did his red in the face, rigid scream thing even before the anaesthetist got his hands on him. I had warned them he had a temper as he started to lose it and they were impressed :-)

Thankfully, because of my experience with N I had decided to opt out of helping to hold him down and just went to the head and talked to him and stroked him. The anaesthetist kept telling me he’d got into the vein without hurting T and I’m sure it was fear which made T react that way. I’m very grateful for the fact that he said once they started the anaesthetic he’d go to sleep fast but it was quite amazing how fast he went. The nice thing was, as he went the sobs subsided. I know it was the drugs but it felt like he’d calmed down before he went to sleep.

He was only in for 20 mins and the surgeon came and told me they’d taken 2 biopsies and that his oesophagus was mildly inflamed, not terrible but clearly not normal.

Although we’re supposed to be waiting for the biopsy results the surgeon was telling me he’d do the nissen in early June, we’d need to do a barium study etc. So I’d presume from that that he knows what he’s seen in there and he’s clearly certain it’s reflux.

Then someone I hadn’t seen before came running into T's room and asked if I was his mother and took me to Recovery. I was worried until I got a few doors down the corridor and I could hear him screaming. I figured at least he was breathing! Even the surgeon was back in Recovery to try and help! As soon as T saw me he tried to climb out of the bed, showering monitor leads as he came. So they got a comfortable chair and I just sat with him as he calmed down and went back to sleep.

He slept for a bit more and then by the time we went to go home he’d been giving his nurse kittens by bouncing on his bed and making the whole thing rattle and shake! He thought it was hilarious – even though he did actually cut his leg on a toy on the bed in the process!

He’s pretty up and down today but reasonably happy – though his throat sounds sore and almost croupy.

So now we have the battle with the paed and the dietician about how T is to be fed.

We’re seeing the GP today for a weigh and measure and I’m going to ask her to get the paed appointment moved up – and also to get a clear and firm letter from the dietician explaining for the paed why she thinks T’s eating needs more serious addressing.

We’d like to get to see the paed in early to mid May – by then we’ll have the biopsy results and had a chat to the surgeon. We want to know exactly how much weight the paed thinks T is allowed to loose, what she thinks he’s actually going to be able to eat for those 6 weeks post op – we know the only thing out of his staples is formula. And have a firm plan in place to swing in immediately T loses that set amount. It’ll be mid winter and it’s not a time to stuff around with his weight. We also have an appointment with the feeding therapists for the 22^nd so that might help too.

So the procedure went well and he’s clearly not too traumatised by it. I’m now telling him he’ll have to have another “Ride bed” later. I had a fascinating conversation this morning with him “Tummy fix?” “No, T, tummy will be fixed later. You need to have another ride on a bed.” “No, no ride bed!” “You need to have your tummy fixed like N so you need to go to hospital and have another ride on a bed.” “Oh, k.”

Who knows what he understands really, but I’ve got to try, and I can’t tell him it’s all over when I know he has to go back, even if it is a couple of months away.

Eleanor.

Finally some progress!

The on going saga of T seems to be finally coming to a head.
I made a GP appointment for Friday to try and further co-ordinate and push things along for him - as I hadn't heard back about the new zantac, speech therapy, or from the surgeon.

So, typically as I was leaving the house we got the hospital admission forms in the post!

T is due in hospital for a gastroscope and biopsy this Thursday. So of course there's been a real flurry of activity to organize child care for the 6 to 8 hours he'll be at the hospital. I thought the point in going private was so we didn't get things suddenly dumped on us! But at least it's progress!

The GP called the dietitian and after they talked, she came to the conclusion that T needs a feeding tube - whether or not it's reflux. That now makes it a definite.

I don't want to do this - but something has to change. We've fought this food battle for nearly 3 years and T has won. I never thought I'd say that, but that's the way it is.

So the GP is now getting the paed on board - and more importantly up to date! So she can also direct the surgeon to go ahead with planning a peg gastrostomy tube.

The GP also chased up where we were at with the speech therapists who deal with feeding issues - and discovered that they've lost the referral! So she was going to sort it out and re-fax it on Friday, and she said that in light of T's worsening eating she'd class him as urgent! I don't know if I like that idea but if it's what it takes then we'll do it I guess.

So right now I'm trying to get my head around the fact that T is having his first general anaesthetic on Thursday. They like parents to go with the child while they give the anaesthetic - and I did that with N when he had his surgery last year. He fought the anaesthetic as they were giving it - suddenly thought of something he wanted to say and tried to pull the mask off!
It was just horrible - and awful to see the fight suddenly end.
But I'll just have to be strong - this has to be done right as he'll have another shortly and I don't want him scared because of my reaction this time round.

I'll keep people posted!
Eleanor.

You know you've got kids when...

A walk on the lighter side for once...

Last night, as the chilli was bubbling on the stove I was summonsed outside by N. He'd been making good use of the sunshine and made a kite out of a plastic bag and some string. To generate enough wind he'd been riding on his scooter with it trailing out behind. Lovely picture huh?
Yeah - and when P got home I was trying to undo an impossible tangle of kite string from the washing line - don't ask how that happened!

And P's first job when he arrived home? To retrieve a gumboot N had thrown on the roof - double don't ask about that one!! Just put that into the 'seemed like a good idea at the time' category from N!

LOL! Kids are great!