Thank you to all the blood donors
Discussion
A somewhat delayed (and lengthy) update from Monday’s GOSH experience.... busy week.
Early start and an easy drive up (Easter holidays), so arrived well in time and we were all sat waiting on the ward around 0740 – while SWH Jnr trashed the wooden train set and generally bombed around the place. He’d been nil by mouth (no water since 0630, so not too bad) and was doing surprisingly well considering he’d had no breakfast.
As ever, friendly and efficient at GOSH; so into the ward/room and he’s set up with his bed and we’ve got the room to ourselves for now. Anaesthetist comes in to check him out, explain the general, the risks etc, and the procedure (PICC line: http://en.wikipedia.org/wiki/Peripherally_inserted... or alternative if it fails). All fine, doctor/registrar comes along after to check him out as well, sign away to say we’re happy with the procedure (which we are of course) and a short wait before he’s weighed and measured, under protest of course, and pretty swiftly down for the general.
He was first in for the day, Mrs SWH went down with him, while I looked after SWH Jnr.2 – he conveniently slept, in fact he did that for most of the day when he wasn’t feeding, good chap. Thankfully Mrs. SWH wasn’t unduly upset by watching him be put under... think the fact it could be done while he was being held by her helped. When I was there the first time in Eastbourne we had to hold him down for the gas, not nice watching his tear filled eyes roll around into an anesthetised stare... anyway, much better this time.
All pretty quick, took about an hour before Mrs SWH could go down again as he was coming round and a bit fractious – well, somewhat of an understatement. The line installation had gone well, all in the right place inside him, but he got mighty agitated when he came round and was struggling away in a good old steroids rage. This had caused the clot around the exit point of the line to bleed again, and basically it was everywhere according to Mrs. SWH. His arm was covered from wrist to shoulder in a plastic dressing, with blood everywhere, on the staff/bed/him/floor... handled calmly however, which is what you’d hope, but good to know... so he ended up with a compression bandage all up his arm to basically clamp it all down and allow the bleed to clot properly... although this looked pretty gruesome (Mrs SWH had a fair few drips of blood over her too) in fact he wasn’t too miffed once back up on the ward and we cracked out the portable DVD player – Winnie the Pooh indeed, very good to subdue the little guy.
After an hour or so the compression bandage was off and he’d had a little bit of food/drink and was generally feeling a bit happier. Nurses were happy he was fine after the general and the bleed (it’s one of the risks, and looked much worse than it was). Time for the Rituximab treatment now, so in with the pre-medication (antihistamine) and on with the 4-5hrs worth of drip.... room now has more people/kids in varying states of illness, humbling as ever.
Half an hour in, more oozing from the arm, not so good, considering he’s having a treatment pushed in through the line.... now this took a while, but was handled well... had to stop the treatment, head off to the ever popular treatment room (yes, there was screaming) and have the line checked out. Turns out it had a hole right at the termination, poor plumbing, or a struggling/pulling toddler I suspect.... so that was more waiting, seems like forever, but probably wasn’t, and up came the IV team to sort it out. Which they did very nicely. Sorted their stuff out, got organised, and got on with it – had to take off the wrist to shoulder sticky dressing, and clean up all the dried blood... never seen so many alcohol/blood soaked swabs. After a thorough clean up, they replaced the end of the line (cut off, clean, new end, clean, done) and after another wipe down with a few swabs went for a smaller plastic dressing over the stitches/entry point – which promptly bled... arse... this time it was much much less, so a good bit of pressure on the area and a bundle of clean swabs taped over it for 10mins and everything was fine. Bandaged up to keep SWH Jnr’s curiosity at bay, and back to continue with the Rituximab.
Many hours of DVDs, books, food, SWH Jnr.2 waking up for some feeding action etc... and treatment done (around 1830..!). Had to wait for some earlier blood tests to come back, Hb down to 10.2 (still acceptable) and a slightly low Potassium count (3.1) – so need to go into Eastbourne hospital for a further blood test the next day – not so traumatic though, given he has the line in now... no stabbing about to find a vein anyway !
Well, quite a day, but successfully done with the second treatment, which means we’re half way through
Follow up test the next day showed Potassium all fine (4.8) and Hb back at 11.2 interestingly. A further set of phone calls with GOSH and they’re happy with that and some more results back from Monday show the count of juvenile red blood cells to be excellent (don’t have a number/measure) which is really encouraging.
Better news is, the steroids can now be reduced!
This is great news, and in fact the whole point of the treatment. Back in again on Wednesday next week... avoiding any Royal Wedding traffic shenanigans, for blood tests and Rituximab Pt.3. The hope is the steroids can come down again following the next set of tests, and progressively tail off over the coming weeks.
The little chap is doing well, and despite having to have his arm wrapped up in cling film for his bath before bed... he’s as cheeky as ever, hopefully the minor steroids reduction can start to reduce the rage incidents too.
As ever... more to follow!
Early start and an easy drive up (Easter holidays), so arrived well in time and we were all sat waiting on the ward around 0740 – while SWH Jnr trashed the wooden train set and generally bombed around the place. He’d been nil by mouth (no water since 0630, so not too bad) and was doing surprisingly well considering he’d had no breakfast.
As ever, friendly and efficient at GOSH; so into the ward/room and he’s set up with his bed and we’ve got the room to ourselves for now. Anaesthetist comes in to check him out, explain the general, the risks etc, and the procedure (PICC line: http://en.wikipedia.org/wiki/Peripherally_inserted... or alternative if it fails). All fine, doctor/registrar comes along after to check him out as well, sign away to say we’re happy with the procedure (which we are of course) and a short wait before he’s weighed and measured, under protest of course, and pretty swiftly down for the general.
He was first in for the day, Mrs SWH went down with him, while I looked after SWH Jnr.2 – he conveniently slept, in fact he did that for most of the day when he wasn’t feeding, good chap. Thankfully Mrs. SWH wasn’t unduly upset by watching him be put under... think the fact it could be done while he was being held by her helped. When I was there the first time in Eastbourne we had to hold him down for the gas, not nice watching his tear filled eyes roll around into an anesthetised stare... anyway, much better this time.
All pretty quick, took about an hour before Mrs SWH could go down again as he was coming round and a bit fractious – well, somewhat of an understatement. The line installation had gone well, all in the right place inside him, but he got mighty agitated when he came round and was struggling away in a good old steroids rage. This had caused the clot around the exit point of the line to bleed again, and basically it was everywhere according to Mrs. SWH. His arm was covered from wrist to shoulder in a plastic dressing, with blood everywhere, on the staff/bed/him/floor... handled calmly however, which is what you’d hope, but good to know... so he ended up with a compression bandage all up his arm to basically clamp it all down and allow the bleed to clot properly... although this looked pretty gruesome (Mrs SWH had a fair few drips of blood over her too) in fact he wasn’t too miffed once back up on the ward and we cracked out the portable DVD player – Winnie the Pooh indeed, very good to subdue the little guy.
After an hour or so the compression bandage was off and he’d had a little bit of food/drink and was generally feeling a bit happier. Nurses were happy he was fine after the general and the bleed (it’s one of the risks, and looked much worse than it was). Time for the Rituximab treatment now, so in with the pre-medication (antihistamine) and on with the 4-5hrs worth of drip.... room now has more people/kids in varying states of illness, humbling as ever.
Half an hour in, more oozing from the arm, not so good, considering he’s having a treatment pushed in through the line.... now this took a while, but was handled well... had to stop the treatment, head off to the ever popular treatment room (yes, there was screaming) and have the line checked out. Turns out it had a hole right at the termination, poor plumbing, or a struggling/pulling toddler I suspect.... so that was more waiting, seems like forever, but probably wasn’t, and up came the IV team to sort it out. Which they did very nicely. Sorted their stuff out, got organised, and got on with it – had to take off the wrist to shoulder sticky dressing, and clean up all the dried blood... never seen so many alcohol/blood soaked swabs. After a thorough clean up, they replaced the end of the line (cut off, clean, new end, clean, done) and after another wipe down with a few swabs went for a smaller plastic dressing over the stitches/entry point – which promptly bled... arse... this time it was much much less, so a good bit of pressure on the area and a bundle of clean swabs taped over it for 10mins and everything was fine. Bandaged up to keep SWH Jnr’s curiosity at bay, and back to continue with the Rituximab.
Many hours of DVDs, books, food, SWH Jnr.2 waking up for some feeding action etc... and treatment done (around 1830..!). Had to wait for some earlier blood tests to come back, Hb down to 10.2 (still acceptable) and a slightly low Potassium count (3.1) – so need to go into Eastbourne hospital for a further blood test the next day – not so traumatic though, given he has the line in now... no stabbing about to find a vein anyway !
Well, quite a day, but successfully done with the second treatment, which means we’re half way through
Follow up test the next day showed Potassium all fine (4.8) and Hb back at 11.2 interestingly. A further set of phone calls with GOSH and they’re happy with that and some more results back from Monday show the count of juvenile red blood cells to be excellent (don’t have a number/measure) which is really encouraging.
Better news is, the steroids can now be reduced!
This is great news, and in fact the whole point of the treatment. Back in again on Wednesday next week... avoiding any Royal Wedding traffic shenanigans, for blood tests and Rituximab Pt.3. The hope is the steroids can come down again following the next set of tests, and progressively tail off over the coming weeks.
The little chap is doing well, and despite having to have his arm wrapped up in cling film for his bath before bed... he’s as cheeky as ever, hopefully the minor steroids reduction can start to reduce the rage incidents too.
As ever... more to follow!
Right then... Rituximab pt.3 yesterday...
Most successful day yet
The PICC line is superb, as you'd hope, and his blood tests, pre-med, and of course the main treatment went ahead perfectly. Early start again and we made it up to GOSH for breakfast around 8am, early rush hour, although the traffic is pretty quiet at the moment given the mass of bank holidays. A neat dodge of Westminster bridge avoided the overrunning Royal Wedding rehearsal - also known as actually taking the correct turn and going the direct route(!)
So, spent a successful yet sweltering morning on the ward. Little chap had a full on stress out at the pre-med in the treatment room. He'd assumed he was about to have a blood test (correct sort of) and was anticipating sharp things, poor little guy. Soon out of there and later in the day once all the treatment was done we were back in there for a dressing change. Now if you don't know what the dressing is like... firstly picture a thin line coming out of the side of the top part of his arm with a couple of stitches and a little dried blood, then the thin line runs down his arm with a large-ish connector end for the treatments. This is then mostly put under a single large plastic (made by 3M so it works) patch for want of a better description. This sticks particularly well and keeps it all as sterile as possible.... my guess is (from the struggling) this hurts like hell when peeled off. Needs changing weekly, so entertainment all round. Professional as ever at GOSH they just got on with it and no messing about. The chap doing it even had a selection of kids programmes on his iPhone - a reasonable distraction. In fact SWH Jnr didn't do the full on steroids rage stress out at this, good skills. All cleaned up and back on with another dressing, and done.
Hb count at 10.7 and his LDH Serum down to 794 - superb, this is the first time it has been normal since we went in on the 23rd Feb
Steroids now reduced again too
Back in again next Friday for the final Rituximab treatment, then I assume we're back for more blood tests as the steroids continue to taper off and he's no longer having the Rituximab. He'll also need the PICC line out at some stage too of course. Fingers crossed but it all appears to be heading in the right direction - Less steroids rage and easier bedtimes currently too... hopefully the chunky toddler will become a normal sized toddler soon too.
More to follow, as ever.
Most successful day yet
The PICC line is superb, as you'd hope, and his blood tests, pre-med, and of course the main treatment went ahead perfectly. Early start again and we made it up to GOSH for breakfast around 8am, early rush hour, although the traffic is pretty quiet at the moment given the mass of bank holidays. A neat dodge of Westminster bridge avoided the overrunning Royal Wedding rehearsal - also known as actually taking the correct turn and going the direct route(!)
So, spent a successful yet sweltering morning on the ward. Little chap had a full on stress out at the pre-med in the treatment room. He'd assumed he was about to have a blood test (correct sort of) and was anticipating sharp things, poor little guy. Soon out of there and later in the day once all the treatment was done we were back in there for a dressing change. Now if you don't know what the dressing is like... firstly picture a thin line coming out of the side of the top part of his arm with a couple of stitches and a little dried blood, then the thin line runs down his arm with a large-ish connector end for the treatments. This is then mostly put under a single large plastic (made by 3M so it works) patch for want of a better description. This sticks particularly well and keeps it all as sterile as possible.... my guess is (from the struggling) this hurts like hell when peeled off. Needs changing weekly, so entertainment all round. Professional as ever at GOSH they just got on with it and no messing about. The chap doing it even had a selection of kids programmes on his iPhone - a reasonable distraction. In fact SWH Jnr didn't do the full on steroids rage stress out at this, good skills. All cleaned up and back on with another dressing, and done.
Hb count at 10.7 and his LDH Serum down to 794 - superb, this is the first time it has been normal since we went in on the 23rd Feb
Steroids now reduced again too
Back in again next Friday for the final Rituximab treatment, then I assume we're back for more blood tests as the steroids continue to taper off and he's no longer having the Rituximab. He'll also need the PICC line out at some stage too of course. Fingers crossed but it all appears to be heading in the right direction - Less steroids rage and easier bedtimes currently too... hopefully the chunky toddler will become a normal sized toddler soon too.
More to follow, as ever.
Update from Friday's final treatment visit to GOSH.... a successful day all in. Early start again, fairly easy with a 5wk old little brother demanding food around alarm time; so all in the mighty Swedish barge and a blast up the M23 again, given the last trip was mid bank holiday madness and we made reasonable time, we actually decided to leave a little earlier this time assuming there would be more commuters back at it... well, I guess they all work from home on a Friday like I do.
Anyway, arrived just after 0800 for an 0920 appointment, which gave ample opportunity for some breakfast acquisition and due to being there early, also known as slightly in the way with a steroid rager demolishing the wooden train set in the waiting area, we were quickly assigned a room to ourselves, ideal, non sunny side of the hospital too, so didn't get quite so stifling.
SWH Jnr unimpressed as ever with the blood tests, despite the PICC line working fine, lots of stressing out and a sweaty little toddler.... he does have good reason to react in such a way, just not nice to combine it with some steroid induced growling - I can see where the idea of the Incredible Hulk may have come from... thankfully he's not green however!
A little wait after the pre-medication, then onto Rituximab pt.4. All went fine, no stress, lots of DVD action, even SWH Jnr can pretty much recite Winnie-The-Pooh now, the proper old Disney version that is... all complete not long after lunchtime. As ever, a highly efficient lot at GOSH.
Had a quick discussion with the Consultant and checked out the day's blood tests as well, Hb now at 11.9 (perfect), White Cell count right down, which is what they expected with the Rituximab (that being what it does) and all looking in the right direction. So, steroids now down to 10mg, ten days later and they go down to 5mg, ten days after that down to 2.5mg.... then after seven more days.... no more steroids!
Now, this is all blood test dependent, and the next few weeks are the crucial measure as to whether SWH Jnr is properly recovering or if more is needed... the white cells will return and hopefully not be set to munch up all his red blood cells again.... fingers crossed... you bet.
Next thing on the list is the community nurse visiting tomorrow to replace the dressing over the PICC line - I get the job of pinning the little chap down while she gets on with it and he howls the house down... then more importantly the blood test she'll do a week tomorrow when she's back again (dressing changes are once a week).
Superb the treatment trips are now done, and the steroids are reducing; the rages are right up there at the moment, properly manic... withdrawal rate is pretty rapid, so makes sense. Poor chap gets stuck between wanting a cuddle and attempting to demolish the house, gripping my neck with all his might, pulling Mrs SWH's hair, the lot.
So... all good so far... fingers crossed for the little guy's blood tests...
Anyway, arrived just after 0800 for an 0920 appointment, which gave ample opportunity for some breakfast acquisition and due to being there early, also known as slightly in the way with a steroid rager demolishing the wooden train set in the waiting area, we were quickly assigned a room to ourselves, ideal, non sunny side of the hospital too, so didn't get quite so stifling.
SWH Jnr unimpressed as ever with the blood tests, despite the PICC line working fine, lots of stressing out and a sweaty little toddler.... he does have good reason to react in such a way, just not nice to combine it with some steroid induced growling - I can see where the idea of the Incredible Hulk may have come from... thankfully he's not green however!
A little wait after the pre-medication, then onto Rituximab pt.4. All went fine, no stress, lots of DVD action, even SWH Jnr can pretty much recite Winnie-The-Pooh now, the proper old Disney version that is... all complete not long after lunchtime. As ever, a highly efficient lot at GOSH.
Had a quick discussion with the Consultant and checked out the day's blood tests as well, Hb now at 11.9 (perfect), White Cell count right down, which is what they expected with the Rituximab (that being what it does) and all looking in the right direction. So, steroids now down to 10mg, ten days later and they go down to 5mg, ten days after that down to 2.5mg.... then after seven more days.... no more steroids!
Now, this is all blood test dependent, and the next few weeks are the crucial measure as to whether SWH Jnr is properly recovering or if more is needed... the white cells will return and hopefully not be set to munch up all his red blood cells again.... fingers crossed... you bet.
Next thing on the list is the community nurse visiting tomorrow to replace the dressing over the PICC line - I get the job of pinning the little chap down while she gets on with it and he howls the house down... then more importantly the blood test she'll do a week tomorrow when she's back again (dressing changes are once a week).
Superb the treatment trips are now done, and the steroids are reducing; the rages are right up there at the moment, properly manic... withdrawal rate is pretty rapid, so makes sense. Poor chap gets stuck between wanting a cuddle and attempting to demolish the house, gripping my neck with all his might, pulling Mrs SWH's hair, the lot.
So... all good so far... fingers crossed for the little guy's blood tests...
Thank you.
Going okay with the reduced steroids so far, many a rage at the moment, but hopefully they'll calm down a bit soon.
Had his dressing changed on the PICC line yesterday, by the community nurse... a little stress initially (to say the least) and a quick, efficient job of changing it really, SWH Jnr was suitably distracted by Mrs SWH playing him a video on her phone... of himself, singing
Next blood test on Tuesday next week, and remain calm...
Going okay with the reduced steroids so far, many a rage at the moment, but hopefully they'll calm down a bit soon.
Had his dressing changed on the PICC line yesterday, by the community nurse... a little stress initially (to say the least) and a quick, efficient job of changing it really, SWH Jnr was suitably distracted by Mrs SWH playing him a video on her phone... of himself, singing
Next blood test on Tuesday next week, and remain calm...
Well, blood test done.... results in the morning.
PICC line dressing change again today, much stress this time, but all done pretty quickly really. Steroid rages and tiredness are on/off in various extremes, his appetite has certainly dropped, which ties up with expectations from GOSH.
Good news is that today his steroids have been halved, down to 5mg. In another 10 days we should be able to halve them again, to 2.5mg... getting there
PICC line dressing change again today, much stress this time, but all done pretty quickly really. Steroid rages and tiredness are on/off in various extremes, his appetite has certainly dropped, which ties up with expectations from GOSH.
Good news is that today his steroids have been halved, down to 5mg. In another 10 days we should be able to halve them again, to 2.5mg... getting there
Thank you.
Yep, the little chap is gradually getting better. Lots of sleep disruption at the moment - he's finding getting to sleep difficult, guessing the rapid tailing off of the steroids makes him feel very odd; although once asleep he does go all the way through the night fine. I think the 0600 wake ups are more to do with light leakage around his curtains, and his 8wk old little brother making a din however!
Looked back at a few photos from when he started his treatment at GOSH this evening, and wow he's lost some weight now. He'd put on loads due to the steroids and had massive cheeks and a proper beer belly style tummy... now much more toddler like. More upsetting is checking out a photo of him when first admitted to hospital back in February.... looking at him in that picture now you'd immediately say he was a very ill little boy, being there at the time he just looked a bit off colour...
...right, deep breath, and look forward.... dressing change on his PICC line again tomorrow, and a blood test again. Results Wednesday and then hopefully confirmation from GOSH we can drop the steroids to 2.5mg.... with a 7 day countdown to no steroids at all... it's been a long journey and he'll be off the steroids 2wks before his 2nd birthday at this rate
On a lighter note, he happened upon Countdown on C4 this afternoon, being somewhat of a fan of clocks... he was apparently transfixed, rather keen on the numbers part too, who needs kids' TV!
Yep, the little chap is gradually getting better. Lots of sleep disruption at the moment - he's finding getting to sleep difficult, guessing the rapid tailing off of the steroids makes him feel very odd; although once asleep he does go all the way through the night fine. I think the 0600 wake ups are more to do with light leakage around his curtains, and his 8wk old little brother making a din however!
Looked back at a few photos from when he started his treatment at GOSH this evening, and wow he's lost some weight now. He'd put on loads due to the steroids and had massive cheeks and a proper beer belly style tummy... now much more toddler like. More upsetting is checking out a photo of him when first admitted to hospital back in February.... looking at him in that picture now you'd immediately say he was a very ill little boy, being there at the time he just looked a bit off colour...
...right, deep breath, and look forward.... dressing change on his PICC line again tomorrow, and a blood test again. Results Wednesday and then hopefully confirmation from GOSH we can drop the steroids to 2.5mg.... with a 7 day countdown to no steroids at all... it's been a long journey and he'll be off the steroids 2wks before his 2nd birthday at this rate
On a lighter note, he happened upon Countdown on C4 this afternoon, being somewhat of a fan of clocks... he was apparently transfixed, rather keen on the numbers part too, who needs kids' TV!
PICC Line dressing change went fine today, major stress out to start with - as you'd expect, but easy going once the dressing was removed. Blood test taken no problem anyway.
Good news is we managed to get the results today - Hb at 13.3 That's great, still at the right level, despite the reducing steroids. Results have been faxed up to GOSH, so we can discuss tomorrow and confirm he can be dropped down to 2.5mg on the steroids from Thursday. Great progress so far, assuming the steroid reduction is on for Thursday we're looking to next week's blood test to confirm he can drop them altogether...
Also need to discuss whether he's having immunoglobulin (antibodies) before having the PICC line removed. In theory the line can stay in for a good while (up to a year if necessary) so that makes follow up blood tests and adding a bunch of antibodies back to his system somewhat easier.
He's on track to be back at nursery by the end of June as well (one afternoon and one morning) and they're happy if he still has the PICC line in as well.
So, good progress again... fingers crossed for next week's results as well
Good news is we managed to get the results today - Hb at 13.3
That's great, still at the right level, despite the reducing steroids. Results have been faxed up to GOSH, so we can discuss tomorrow and confirm he can be dropped down to 2.5mg on the steroids from Thursday. Great progress so far, assuming the steroid reduction is on for Thursday we're looking to next week's blood test to confirm he can drop them altogether...Also need to discuss whether he's having immunoglobulin (antibodies) before having the PICC line removed. In theory the line can stay in for a good while (up to a year if necessary) so that makes follow up blood tests and adding a bunch of antibodies back to his system somewhat easier.
He's on track to be back at nursery by the end of June as well (one afternoon and one morning) and they're happy if he still has the PICC line in as well.
So, good progress again... fingers crossed for next week's results as well
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