And we saw the paed today...

Well, we had our paed appointment today.

The GP had printed out all the height/weight info she’s kept and been charting so we could give it to the paed. I also had copies of all his blood work – amazingly the only thing he’s actually deficient in is iron despite being on an iron supplement! There are a few things which are on the low side of normal though. I don’t know how he’s managed to keep his biochemistry in balance over this time of no weight gain/abysmal eating!

Poor T has been and is still sick – had a cold 10 days ago and is still sick. The GP checked him out on Friday and gave me an antibiotic script just in case because he hasn’t got reserves for fighting an illness and it’s just as well because he’s been spiking fevers since Sunday – highest was 39.2oC (around 104F I think). He’s as white as a sheet and barely eating – I’m just pushing the Neocate Advance at him as much as I can! But he looks thinner – he gets weighed by the GP on Friday so I’ll see if there’s any real change or if it’s just fluids due to the decrease in eating and drinking and the temperature.

All the kids have been sick and just to be different W's had a tummy bug which, touch wood, none of the other kids have got! My hands are soooo dry from all the washing as I go between kids but if I can stop T getting a tummy bug then it’s all worth it!

I just needed the paed to take T’s eating seriously and actually start moving towards some kind of a resolution to this nightmare. It’s nearly 5 months of no weight gain and he was on the 3^rd centile before he started this no gain thing.

So acc to their scales T had gained a bit from their last weight which was way out on the last one from the GP.

So we gave the paed the GP’s weights, growth assessment, chart copies etc and she was concerned enough to at least say we have to do something – no, really?!

She looked at his food diary, paged their dietician and got the info to start him on Polycal added to his Neocate Advance. Those two combined will give him total nutrition and boosted calories – assuming he drinks enough of the stuff!

She’s referring him to the dietician with the feeding team at the hospital so she and the feeding therapist have to work together – T's normal dietician isn’t returning my calls any more! She can’t make him eat any of her suggestions so she’s given up!

So the paed described T to their dietician as one of those kids who have learnt not to eat. She wants to see him in 3 months and see how he’s going with the increased calories. The Polycal plus formula should give us a safety net now to actually get a serious team together to get him to relearn to eat. We do still have to fight the reflux monster as he’s only taking the omeprazole solution around 50 % of the time and so we continue with the cisapride. I personally don’t believe he’s going to win the reflux fight and so the feeding fight, without help – like surgery. But if we can get more calories into him then I’m happier to wait, and by the time we see the paed in 3 months time T will have been on omeprazole for 4 months, nearly the 6 months the surgeon suggested!

At least I feel like T is safer. It’s not a proper answer but that’s only going to happen with time and I knew it was never going to be quick. If we can get a dietician to work with the feeding therapist then we’ll get past the ridiculous suggestions of cutting calories to get him to eat. Now T at least should start gaining again and can continue on his development while we play around with everything else.

And when it rains...

My last post gave the saga of W's head...
Since then T came down with a cold - no big deal, except he's not eating much. That's normal enough for a sick kid but T hasn't got the reserves to do that with! I noticed he was puffing as he went about his usual play so he got to visit our beloved GP on Friday. End result, because his temp went back up today - he's on antibiotics.

N's picked up the cold and cough from T but doing well enough on his own.

W - just to be different, has a tummy bug! Probably picked up in the ED waiting room over last weekend but now I'm trying to keep all 3 apart, keep W hydrated, make sure I don't carry the bug from W to the others etc. My hands are getting sore from washing but if T got a tummy bug it'd be a disaster!

P saw a different specialist about his foot this week - probable osteomelytis and needs an MRI to see exactly what's going on. Oh, yes and by the way - no wonder you are having pain on walking - the fat pad at the ball of your foot was dead so they removed it and the notes say you need orthotics - why haven't you got them yet?

He's walking on bone and even when he complained of pain no one read through the notes to see they needed to tell him to get the orthotics...hospitals...

At least there's something positive - N has managed to gain some more weight! He's gained 500g in about a month so the change to the slow release ritalin really is paying off! I know that gain isn't just from his high cal drinks either - we know he's eating dinner better and faster - like in the normal family dinner time rather than over 3 hours and taking it to his room!

When the drains blocked last weekend - yes, the same weekend as we were in and out of ED, - we decided, completely unplanned, to go out to dinner. We had a nice family dinner, no one misbehaved, we weren't stressed, and everyone enjoyed it - and Nicholas even ate everything and got to have icecream! We got home and I realised what we'd actually been able to do - thanks to the slow release med N was under good control and we didn't have to plan the trip out to dinner, extra medication - then he wouldn't want to eat etc. FANTASTIC to have a 'normal' family outing!!

T sees the paed on Tuesday so I'll update after that - hopefully good news to report about actually starting to DO SOMETHING about his eating!

And trying to apply carpet to your head results in...

According to me - the weekend from hell!
According to W - an awful headache and an extended ban from soccer due to concussion!

Thurs morning we were rushing to get out to an appointment (what a surprise - either running late or having an appointment to go to - take your pick!) and W fell UP the stairs. True skill...

He appeared beside me pale, wobbling and telling me he'd seen bright coloured flashes, had double and blurred vision and felt sick - and then proceeded to wretch!

I took him to the doc a couple of hours later (I had an appointment I'd waited 6 months for!) and he got a reasonably clean bill of health but to be watched as he had concussion and whip lash type injuries. Remember he fell UP 1 stair with was carpet covered! W doesn't do anything by halves!
As T had his 2 weekly weigh in the next day the GP wanted to see W as well to check he was improving as expected.

He was irritable, headachy and generally concussed and horrible all day on Thurs. Friday he seemed better, all over the place and very hyper, but couldn't concentrate, although I sent him to piano anyway - mean mother :-)
The GP checked him over and decided things weren't resolving the way she'd like and so called the hospital and then sent us to the ED. This is Friday evening...N was at swimming with my mother, T was tired, P still has problems with his foot and can't walk far and the hospital is going to be crazy - so off we went!

We sat around for 90 mins before getting to see a doctor. She said he had a better than 50% chance of being admitted, possibly needed a scan and the paeds surgical reg would be down at 9pm - so about an hour away. So I called P, told him to take the other two home - and grabbed a biscuit from the vending machine in the waiting room!

I'd had 2 bites when another doctor appeared and told me that he'd done lots of reading about head injuries, and had some experience with them and didn't believe that W needed a scan, or an admission or that anything was more than a concussion and not to worry. Apparently the odds are very small that they'd have missed anything and anything would go wrong - and so I could go home!

So I quickly called P back and got dinner and ourselves home. W was clearly not right - he was half way through a hamburger and got up, got a knife and fork and sat down, trying to eat it with those!!!

We also discovered - finally home, tired, hungry, stressed - that the drains in the kitchen were blocked! Dishwasher, sink and insinkerator all blocked! Our attempts to clear it resulted in yucky water all over the floor which needed a double wash kind of approach. Mopping the floor at 11pm after 90 mins in the ED is NOT my favourite way to spend a Friday evening.

Saturday morning brought us - a kitchen with still blocked drains, fatigue due to waking W 2 hourly through the night, and a W who still had double vision, a headache and then threw up his breakfast and complained his fingers were progressively becoming numb. And so we headed back to the ED!

I'd hoped we'd miss the sporting injuries but got caught up in something much worse! The computers crashed hospitalwide! So they couldn't clear patients being transferred to the wards easily so it took longer to get from the waiting room to see a doctor. We were extra unlucky as we arrived BEFORE the computer crash so W was entered into the system - and then lost.
Thankfully I had a print out of who we'd seen the night before and their findings and so was able to get them to look at that and they didn't need the computer so much for him.
But it was still a5 hour wait before we saw a doctor - and he got a dose of a low grade painkiller and sent home!

Thankfully, W is getting better each day, the drains got unblocked on Monday, the dishwasher fixed today - and we've gone a long way through our stack of plastic plates :-)

Where have I been?

Oh dear,
Another long silence - after all my good intentions!
I feel like I've taken a step back into a time warp I thought and hoped I'd left behind - kid appointments coming out my ears!
I've had couple of appointments of my own to chuck into the mix but things are so like they were when W and N were little - we had at least 1 medical or affiliated service appointment a week for so long...

These days it's 2 weekly weigh ins for T with the GP, 2 weekly appointments with a specialist for N - we're moving his afternoon dose of ritalin to a sustained release tablet (once we've finished the adjustments we'll go back to monthly weigh ins with the GP for N), 2 weekly speech therapy sessions for T, 2 weekly phone calls with T's feeding therapist and we've thrown in a surgeon appointment for T and a paed appointment next week.

Next week, that's going to be a 'take a deep breath and dive in' kind of week - Tues is the paed, Thurs is SLT, Fri is GP and N's specialist. I guess it's a bit better than the other week where, over the family, we managed to have 6 medical or related appointments in 4 days!

At least with most stuff being 2 weekly I've managed to get it all on the same week so we get a gap in between!

Anyway, I'll post an update on T, probably tomorrow!