Thank you to all the blood donors

Thank you to all the blood donors

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Six Fiend

6,067 posts

216 months

Friday 1st July 2011
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SWH I'm so pleased to hear then little one is doing well. Putting up with the PICC lines etc is no mean feat, he's a real star and has my full respect! They do itch like a bugger round the entry site and it's just plain inconvenient.

I'm 40 and dislike having canulas inserted but it's more the anticipation than the reality. A fan blowing gently helps take my mind off it and may distract junior too. I hope the next treatments go well for him smile

Another thumbs up from me to blood donors. Having delivered it as a courier for the last couple of years I was the recipient last week. It was the result of an arterial bleed during an IV port replacement which didn't go to plan.

Until we have another go I'm back to mid lines and canulas if I'm poorly. Boo Hiss!

But I'm alive, which is darned good biggrin

Edited by Six Fiend on Friday 1st July 10:43

SWH

Original Poster:

1,261 posts

203 months

Thursday 21st July 2011
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Immunoglobulin Pt.2 - Done smile

Into the DGH in Eastbourne with SWH Jnr today, after a little wait, he decided the initial observations we're not going to happen and had a bit of a toddler moment, fair enough... don't think the nurse expected that reaction! Anyway, Midazolam administered and he was well out of it after about 15mins... usual delays, but still within the sedation, in to the treatment room we went. Veins found in his feet, so we had to wrap him up in a sheet to pin him down, and have a couple of nurses to hold him (and me) while one of the doctors had a go with the first cannula... fail, although she did get a blood test sample, next two attempts were in the other foot and the third succeeded - flushed ok, taped down and bandaged over... then flushed again, and was still ok, excellent.

After what seemed like an age... flushed again fine and on with the Immunoglobulin, starts off at 4ml/hr, then after 30min, 8ml/hr, another 30min and 16ml/hr... and so on, monitoring for any reaction as the changes progress. SWH Jnr all fine with this, not so keen on the line coming out of his foot, but the usual mix of Winnie the Pooh and the Jungle Book on the DVD player seemed to do the trick.

Slight delay again getting the cannula out, and a decent bleed, nothing too dramatic however and soon clotted. All finished off and home by 6pm, good good. So, going well... and the blood test results, Hb 14.3... up at the high end, but all fine.

SWH Jnr is basically getting properly better now, which is superb, although being back in the hospital does bring it all back a bit. The 30mins in the treatment room (there was a 10min faff about at the start where they hadn't realised a blood test was needed...!) wasn't nice, but compare that to attempting to maintain that PICC Line for the past month - well, his arm is still in a bit of a state where the dressing used to stick on. I expected the stitching areas and entry point to be scarring up nicely, which they are, dark/deep scars, but the underside of his arm is still rough, a couple of raw spots (tiny) and just about recovering now.

Think that's about it as updates go... SWH Jnr doing well, seems to like being a big brother most of the time, totally mad for his toy cars - a pre-breakfast necessity, still obsessed by clocks, and currently sporting a particularly fine red nose/top lip from a face-plant into astroturf at nursery yesterday afternoon... ouch.. oh, and he managed a good headbutt of the coffee table yesterday morning too.. we're taking this as a sign of him being a cheeky toddler who's getting better smile He's even handled a cold fine this week as well, a very good sign.

...he's pretty chuffed at having the dog back too (was holidaying with my mother while SWH Jnr.2 arrived)... all 6st of nutty black lab... perfectly happy being leaped upon by a toddler, cuddled and generally poked about... removing the dog hair from SWH Jnr is somewhat more tricky however!

Thanks to all for the comments - appreciated smile

More to follow as ever... back in for Immunoglobulin Pt.3 on the 17th August.

SWH

Original Poster:

1,261 posts

203 months

Wednesday 17th August 2011
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And that's pt.3 done as well smile

Cannula insertion went well, managed to get SWH Jnr in there while still well sedated which helped. No screaming this time, just lots of struggling, and they got a vein in his foot straight away.

Loads of waiting about, as ever, just frustrating more than anything else.

Nurse did turn up with a different sedative, well, buccal midazolam rather than the oral/swallowed version he's had the past three times. Informed decisions on what's being administered to your child don't happen at the point where a nurse is gearing up to squirt something into his mouth (well, corner of his cheek) which you've never seen or discussed before. Questioning why he's having this rather than what he's successfully had before didn't get the sort of reassuring response we'd have hoped for to say the least - it's probably no different, but I have no idea, and the nurse really didn't help matters by getting all up tight saying they do this all the time... which wasn't the question; another returned with the acrid smelling blackcurrant version used before, SWH Jnr took it with minimal protest, worked perfectly as before.

Not getting the second bottle (they were very small) of immunoglobulin out of the fridge before hooking it up wasn't the best nursing care moment either - fridge temperature fluid into 2yr old's foot produces a very agitated toddler, can't exactly explain it to him either - obvious I'd have thought, shame, took ages to calm him down after that.


That's quite a grumpy sounding update I guess, so, some un-grumpy stuff....

SWH Jnr is doing great, today he's the same weight as he was at his steroid induced chubbyness a few months back, but loads taller and back to being a proper crazy little person again smile

Half way through the immunoglobulin treatment now, three down, three to go... will be all done with the treatments by 7th Nov woohoo

CoolC

4,220 posts

215 months

Thursday 18th August 2011
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Glad to hear Jnr is doing well.

I did my bit on monday and donated another arm full.

SWH

Original Poster:

1,261 posts

203 months

Thursday 18th August 2011
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Cool, thank you smile

I assume it takes quite a lot to extract the immunoglobulin (antibodies), now the pollen has dropped and I'm of the antihistamines I'll be donating an armful myself soon too.


SWH

Original Poster:

1,261 posts

203 months

Wednesday 14th September 2011
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Back in for part 4 yesterday... bit better organised this time, which was a plus.

We'd managed to get booked in for 9am, so top of the list following the ward rounds. I checked the immunoglobulin was out of the fridge in good time this time as well - it was.

Sedation... well, didn't really work this time, which was a great shame. SWH Jnr was having none of it, don't know whether it was the nurse watching (and attempting to encourage him) or just the whiff of the sticky blackcurrant flavoured stuff that put him off... Mrs SWH and I attempting to get him to take it went especially well, remarkably sticky stuff once in the hairs on your arm.

Anyway, no way of telling how much he'd had, certainly a little because he did chill out a bit... not enough to be calm going into the dreaded treatment room that's for sure. It's just as likely he picks up on our anticipation as well, which won't help. Remarkably, first attempt at getting a cannula in - right foot, straight in, not too much fuss - my scale on this is a bit warped of course, so we'll call that <5mins of screaming...

Annoying part (there always is...) is that the doctor doing it wasn't aware SWH Jnr needed to have a blood test at the same time... so had flushed the cannula and bandaged it up while I was pointing this out. I'm not even mildly surprised anymore that no-one has bothered to read his notes, or work out what might need to be done when he comes in for a monthly antibody update... you know, testing how he's doing wouldn't be beyond imagination... not as if his notes file isn't half a foot thick or anything.

Blood test was attempted before the immunoglobulin was hooked up, but wouldn't bleed back, so had to wait until the end where the cannula was taken out for the nurses to do it, with a screaming SWH Jnr (as you'd expect) and them trying to get drips of blood off his foot... not a great finish.

The treatment went fine, other than the nasty bit at the end above of course, no adverse reactions, and SWH Jnr didn't get too miffed as he wasn't overtired due to starting in the morning, rather than after lunch.

Typically the DGH haven't called today with his blood test results - so that'll be me chasing it up again tomorrow, and checking if they've managed to remember they need to inform GOSH as well. Interestingly GOSH had called them to enquire if SWH Jnr's treatment was happening - think I'll get them to send all the results through.

So, two immunoglobulin treatments left for the little chap now, they certainly don't get any easier, he's way more aware of what's going on... even knows the road route into the hospital now, in a kind of, "oh, we're not going to B&Q" sort of way, and starts saying about going home.... then doing some colouring in at home later in the day was drawing the 'smoke' from the hospital chimney, along with a load of other stuff, and said about it, then said, "Did you cry lots today? Brave little boy..." ...focused the moment a touch.

Along with generally being better, the little guy is growing loads as well, which is a great catch up from the steroids effect from earlier in the year too.

So, onward to next month, only two left to go smile

bexVN

14,682 posts

212 months

Thursday 15th September 2011
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I bet you can't wait til the end of it all but great that he's doing so well (because of all the tx!)

SWH

Original Poster:

1,261 posts

203 months

Thursday 15th September 2011
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Indeed smile

Realise there will be follow up blood tests, but yep, definitely be good once the monthly treatments are over!

Good news from the blood test done on Tuesday - Hb 12.7 and all counts within normal range, great stuff.

Roger Dodger

12,230 posts

195 months

Sunday 18th September 2011
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No thanks to me!

I'm banned for life from donating frown

tvr wife

112 posts

182 months

Tuesday 27th September 2011
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SWH said:
Indeed smile

Realise there will be follow up blood tests, but yep, definitely be good once the monthly treatments are over!

Good news from the blood test done on Tuesday - Hb 12.7 and all counts within normal range, great stuff.
fabulous news :-)

SWH

Original Poster:

1,261 posts

203 months

Tuesday 27th September 2011
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Cheers smile

Off to donate an armful myself tomorrow.

SWH

Original Poster:

1,261 posts

203 months

Monday 10th October 2011
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Immunoglobulin pt.5... done smile

Far easier being booked in for a 9am arrival at the DGH, less time for faffing about and the schedule going out the window.

SWH Jnr is now fully aware of where he's going and what's going on, which isn't so easy to deal with, lots of no no no and take me home type comments. All ready for us today, well, pharmacy needed a chase up for the actual Immunoglobulin, but nothing too drastic.

SWH Jnr was well up for a bit of resistance today, even at the initial observations stage, thankfully we had a super calm nurse (same one when he was admitted initially) so managed the temperature and weight measures. The oxygen saturation/pulse had to wait until later (monitor taped on the same foot as the cannula). Midazolam didn't really go down too well either, mostly spat it all out again (fair enough, it stinks), it did have a little effect on him, which made little or no difference in the treatment room, but did calm him down nicely until we went in.

Treatment room was about 40mins of trauma.... mostly a screaming SWH Jnr, with a sheet wrapped over him, me holding him down on the bed, 2 nurses holding his legs and the consultant doing the cannula insertions - they don't bother letting the registrar etc have a go anymore it would appear. Took three goes to get the cannula successfully in, had to happen sometime, the last two goes were comparatively swift. First one leg, got a blood test sample out, it then failed. Second leg, cannula in, wouldn't bleed back, flushed initially, but then when strapped down it wouldn't flush. Third attempt back in the first leg (well.. all into the foot) worked, very well in fact, blood everywhere... samples re-done for the blood test, all cleaned up and strapped down.

...the amount of screaming a two and quarter year old can sustain is truly the stuff of nightmares, it's the sort of thing you'd get on a Harrison Ford/Liam Neeson film where they've kidnapped him and his family, and are playing torture tapes to get him to talk... not sure they'd make him hold the little chap down while doing the torture however... Mrs SWH reliably informs me, as I'd expect, it's far from easy being outside either! Hardly going to be a walk in the park for SWH Jnr either.

So... cannula successfully in, not too much faffing about, despite it taking a while, so out and back to the bed. Immunoglobulin made an appearance shortly after, and the super effective nurse popped back on the spot every half hour to up the feed rate. All done and dusted with that pretty quickly really (a few hours...!). Cannula out with not too much struggling, and away we came.

Elongated drive home on a good sleep-drive (for SWH Jnr, not me!), and back home to play with the dog in the back garden for a while before tea time smile

Between the last treatment and this one SWH Jnr has grown in height again, and put on around 250g by the looks of it (checked the notes). All seems to be going the right way, hopefully today's blood test results will show all is stable still as well. Also had his belated 2nd birthday party the other weekend, the actual event was back in June, but we had no idea how he'd be with the treatment at that stage; hence a royalty style official public birthday type event. 13+ 1-3yr olds bombing about a village hall and the small garden area... hadn't planned for the super sunshine weekend we eventually had, which made it even better, a good time had by all and lots of generosity in the presents (we recommended donations to GOSH as opposed to actual presents).

So.... five down, one to go, and all that fighting and screaming is our little boy getting better... this is far far outweighed by all the cheekyness, laughter, crazy antics, love and good nature of the little chap, pretty humbling all in all.

SWH

Original Poster:

1,261 posts

203 months

Monday 10th October 2011
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Oh... and my blood donation the other week... well, if you go to the dentist in the morning (hygienist as well) you actually have to wait 24hrs before you can donate - would have been good to know that before going of course!

Maybe able to donate on Thursday this week... wonder if 48hrs after a flu jab is acceptable, I suspect not, we'll see (I'll phone first this time!) smile

BlackVanDyke

9,932 posts

212 months

Tuesday 11th October 2011
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Wow. I'm sorry it's still so rough - I hadn't really factored in what it'll be like given how fast little ones that age develop. My best mate's son was very badly scalded when he was 5, she had to hold him while they cleaned his burns etc... 18 months later, he barely remembers the entire episode and is right as rain albeit with a HUGE scar - but she will remember the screaming for a long long time. frown SWH jr will in a year's time not have a clue about what he's survived - you at least have the security of that knowledge. It'll be rough for you guys for a while, but he'll grow up in blissful ignorance of the reality of how horrible those days at the hospital had been.

Thrilled to hear about how well he's doing - little kids are remarkably tough. How many more treatments to go now?

SWH

Original Poster:

1,261 posts

203 months

Tuesday 11th October 2011
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Thank you... good to hear, we're hopeful he'll forget most of what has happened really, just the monthly reminders aren't helping him just at the moment smile For us it's certainly hard, but can be put aside - not ignored, that's not helpful to anyone; but we're able to rationally discuss it, so getting straight in your head everything that's happened is, although not easy, possible.

As for treatments left to go..... just the one woohoo

SWH

Original Poster:

1,261 posts

203 months

Wednesday 12th October 2011
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SWH Jnr's blood test results from Monday.... a healthy Hb of 13.7, meaning it has gone back up, which is good as it was on a (slow) downward trend from when he came off the steroids back the summer. All counts were within normal boundaries again too, which is excellent smile

SWH

Original Poster:

1,261 posts

203 months

Friday 21st October 2011
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So my blood donation needs to wait 8wks from the flu jab, arse, found out before queuing up in there this time however, so somewhat less frustrating. SWH Jnr's week of disruption and not sleeping properly after the treatment has now passed again thankfully too.

Now in other news... it would appear I need to purchase some proper running trainers.... GOSH have accepted my application to run the 2012 London Marathon to raise money for them smile

Not really being a 'go for therapy' sort of person, doing this fits the bill perfectly for me - best get training and finding a load of sponsors then!

Far more importantly than all of that.... in 16 days he'll be all done with the Immunoglobulin! smilesmilesmile

Geoffers

889 posts

254 months

Friday 21st October 2011
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Bloomin heck !
First time I have seen this post, just read it through!
Sounds like one hell of a time Op, remember when I had to take my lad into Hospital when he was that age (had a convulsion) never been so scared in my life!
Seems like you have a brave little chap, I wish you and all your family the best, am just off to give my son(7yrs) a quick hug!

BlackVanDyke

9,932 posts

212 months

Thursday 27th October 2011
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SWH said:
So my blood donation needs to wait 8wks from the flu jab, arse, found out before queuing up in there this time however, so somewhat less frustrating. SWH Jnr's week of disruption and not sleeping properly after the treatment has now passed again thankfully too.

Now in other news... it would appear I need to purchase some proper running trainers.... GOSH have accepted my application to run the 2012 London Marathon to raise money for them smile

Not really being a 'go for therapy' sort of person, doing this fits the bill perfectly for me - best get training and finding a load of sponsors then!

Far more importantly than all of that.... in 16 days he'll be all done with the Immunoglobulin! smilesmilesmile
Blimming fantastic! Put me down for a few squids as and when you get all the forms sorted, I bet loads of PHers will be up for sponsoring that. Bonus points if you do it dressed as a Caterham or something.

Thinking good thoughts for the final IVIg treatment, remember that he WILL forget all this, he might react to smelling *that* disinfectant or whatever but he'll genuinely have no idea of how distressed he was, although re-reading what you mentioned about him getting a bit panicky even en route to the hospital I have an idea. I'm wondering if the play worker might be up for a few monthly sessions of dropping in to just mooch about and try and help him re-learn that hospital is not just a horrible scary place where they do things he doesn't like? Just so that you can in fact drive past without a very upset little SWH every time for the next few months.

Antonia

305 posts

162 months

Thursday 27th October 2011
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BlackVanDyke said:
I'm wondering if the play worker might be up for a few monthly sessions of dropping in to just mooch about and try and help him re-learn that hospital is not just a horrible scary place where they do things he doesn't like?
What a brilliant idea. Another one for my book of ideas.