Friday +29
William ate a piece of polystyrene, I mean rice cake the size of a 50 pence piece!!!!! The first food for 3 weeks!!! He then didn’t drink his 3rd 50 mls of rice milk but I suppose you can’t have everything. He is a bit restless now and very thirsty so if he is not sick I will eat a rice cake or my hat (which might be tastier)!!! The TPN is late tonight, it’s 8.30 already and sometimes it goes up at 7, there is lots of rustling involved because it comes in a bag with a light protective bag over the top of it (it doesn’t like the light) so W and I might settle down for a spot of TV this evening for a Friday treat. He had his splint removed from his Hickman line repair but otherwise we are medically quite uneventful so far at least today (which is after all the way we like it). Jack (the lucky little chap) has received his get out of jail free card and goes home on Tuesday all being well which is great news. Keller went back home again so that’s good. Alarmingly I just heard a woman in the kitchen who was discharged from here, went home for 2, yes that’s right 2 days, has promptly spent 6 months in Sheffield (hospital) (I know it is a great city but there are better ways to see the country than being based in hospitals) with her son and is now back here for review? It’s a long way round (ooh must get R to tape Long Way Down (love Ewan and Charlie)) journey this BMT malarkey.
Saturday +30 and Sunday +31
Well my hat was very tasty, W wasn’t sick hoorah! He has eaten a whole large rice cake for lunch and 3 fingers of toast for tea on Saturday. I also gave him half a slice of toast and marmite for breakfast on Sunday before remembering that he is supposed to be wheat free…duh. However we are now armed with wheat free bread which weighs a ton but W is tucking in for his Sunday tea. For lunch he ate half a rice cake and his milk is up to 9 mls an hour. It feels like we are making progress. He is a still a bit snotty, they are going to take a swab tomorrow. I had a lovely lunch with Nick yesterday a mooch round the British Museum and a trip to Covent Garden. Today I have been back to Covent Garden to return William’s too small Mammoth Crocs only to find they don’t have his size and won’t until the end of November. Boo. I went for a bit of a wander, got a bit lost but found myself amongst the lions of Trafalgar Square, so went up past Picadilly Circus, Regent Street, into Oxford Street and back through to Holburn so am quite tired now. W has had fun playing with Daddy. He slept well last night and he did give Rob and I a bit of evening time together which was nice. We were able to wave to Rob across the road this morning which was fun. This post is a bit jumbled up, just like us at the moment.
Sunday, 28 October 2007
Friday, 26 October 2007
News from fox
Wednesday +27
Happy 6th Birthday Hannah!!!
We have had a reasonable day today, got some straws!! W has a bit of a rash today, well he is a bit blotchy but not itchy or anything they think it may well be Graft versus Host. I am assured that a little is a good thing but not too much, I know of 5 children here because of it, 4 of whom have been readmitted (the other hasn’t made it home yet). We want just enough to make the system strong or something. Believe it or not it is quite hard to get hold of any/accurate information here. The nurses aren’t able to advise and the doctors are a bit vague and hedge their bets and then change their minds and the consultants tell you quite a lot in 2 minutes then I can’t remember exactly what they said!!! (note to self, maybe I should record him?!) One of the mums here is a nurse and has a comprehensive knowledge of the immune system but I feel hugely inadequate when talking to her and sure that she would be shocked by the naivety of some of my questions so I might have to do some (more) internet research!!!! Our last few consultant visits have taken place in the corridor because W has been asleep and the corridor is not exactly conducive to a full, frank and confidential discussion (but it saves them washing their hands for the 10th time and donning pinnies (and quite frankly sometimes there are up to 6 of them and that’s a lot of soap, hand towels and pinnies!)) Daniela stopped by the ward today (Wednesday is BMT/Immuno clinic up in Elephant Day Care) I popped out to see George and Ivanlyo in the family room. Ivanlyo looks great, he is charging around and has no NG tube. They have to come back every couple of weeks and they are going to start reducing some of his meds now. They have had a few problems but are SO positive and are very encouraging to talk to. They know a number of the current readmissions from their time here. William neutrophils and white cells have recovered a bit on their own which is good news and his haemoglobin is up a bit thanks to the blood from last night. Excitingly we received a get well card from the donor, which I was not expecting, addressed to ‘? And Family’. I have been studying his writing, sniffing the card (I am weird aren’t I? (rhetorical question)) in an attempt to reveal more about him than I know which is his sex (obviously) age and weight! He says that he hopes to hear that ? is feeling better soon, so we shall write again.
Thursday +28 (can’t quite believe it has been four weeks!)
W woke up this morning in a puddle of poo which wasn’t a great start for so many reasons but went back to sleep once cleaned up so he must have been really tired. He had a nice play this morning with the play assistant who loaned us a road mat so the cars have been ‘brooming’ around. I met Jo at Harrods and was treated to a fabulous lunch in their Lebanese restaurant, we had a short wander around but managed to hang on to our money (this time!) A hectic dash down to the tube when we realised that Jo was cutting a bit fine for her train back, and she was, it inconsiderately left without her but it did mean that we met up again for a drink. It was extra great to see her twice in one day!!! Williams blood counts were down again this morning so he had some GCSF this afternoon so that will help. The consultant will be round in the morning and I think they will be tweaking some of his drugs so I am writing a (short) list of questions (I have written them on hand towel, as the nurses do so that they don’t have to carry notebooks from room to room, clever huh!) and will be in the room (not the corridor) when they get here!
Friday Update,
the Consultant came by and did some nodding, so that's ok then. Late last night W was sick and brought up his NG tube so we had to have that replaced at midnight, which wasn't great at all. He is a bit tired today but sleeping now (I hope) and has had fun with Play Doh and the play assistant and occupational therapist (who cam routinely to check him out!) and will be watching more of Tractor Ted later, no doubt.
Happy 6th Birthday Hannah!!!
We have had a reasonable day today, got some straws!! W has a bit of a rash today, well he is a bit blotchy but not itchy or anything they think it may well be Graft versus Host. I am assured that a little is a good thing but not too much, I know of 5 children here because of it, 4 of whom have been readmitted (the other hasn’t made it home yet). We want just enough to make the system strong or something. Believe it or not it is quite hard to get hold of any/accurate information here. The nurses aren’t able to advise and the doctors are a bit vague and hedge their bets and then change their minds and the consultants tell you quite a lot in 2 minutes then I can’t remember exactly what they said!!! (note to self, maybe I should record him?!) One of the mums here is a nurse and has a comprehensive knowledge of the immune system but I feel hugely inadequate when talking to her and sure that she would be shocked by the naivety of some of my questions so I might have to do some (more) internet research!!!! Our last few consultant visits have taken place in the corridor because W has been asleep and the corridor is not exactly conducive to a full, frank and confidential discussion (but it saves them washing their hands for the 10th time and donning pinnies (and quite frankly sometimes there are up to 6 of them and that’s a lot of soap, hand towels and pinnies!)) Daniela stopped by the ward today (Wednesday is BMT/Immuno clinic up in Elephant Day Care) I popped out to see George and Ivanlyo in the family room. Ivanlyo looks great, he is charging around and has no NG tube. They have to come back every couple of weeks and they are going to start reducing some of his meds now. They have had a few problems but are SO positive and are very encouraging to talk to. They know a number of the current readmissions from their time here. William neutrophils and white cells have recovered a bit on their own which is good news and his haemoglobin is up a bit thanks to the blood from last night. Excitingly we received a get well card from the donor, which I was not expecting, addressed to ‘? And Family’. I have been studying his writing, sniffing the card (I am weird aren’t I? (rhetorical question)) in an attempt to reveal more about him than I know which is his sex (obviously) age and weight! He says that he hopes to hear that ? is feeling better soon, so we shall write again.
Thursday +28 (can’t quite believe it has been four weeks!)
W woke up this morning in a puddle of poo which wasn’t a great start for so many reasons but went back to sleep once cleaned up so he must have been really tired. He had a nice play this morning with the play assistant who loaned us a road mat so the cars have been ‘brooming’ around. I met Jo at Harrods and was treated to a fabulous lunch in their Lebanese restaurant, we had a short wander around but managed to hang on to our money (this time!) A hectic dash down to the tube when we realised that Jo was cutting a bit fine for her train back, and she was, it inconsiderately left without her but it did mean that we met up again for a drink. It was extra great to see her twice in one day!!! Williams blood counts were down again this morning so he had some GCSF this afternoon so that will help. The consultant will be round in the morning and I think they will be tweaking some of his drugs so I am writing a (short) list of questions (I have written them on hand towel, as the nurses do so that they don’t have to carry notebooks from room to room, clever huh!) and will be in the room (not the corridor) when they get here!
Friday Update,
the Consultant came by and did some nodding, so that's ok then. Late last night W was sick and brought up his NG tube so we had to have that replaced at midnight, which wasn't great at all. He is a bit tired today but sleeping now (I hope) and has had fun with Play Doh and the play assistant and occupational therapist (who cam routinely to check him out!) and will be watching more of Tractor Ted later, no doubt.
Wednesday, 24 October 2007
ANOTHER week begins...
Monday +25
William had his Hickman Line fixed (again) this morning which he didn’t think much of, but they did rule out teeth damage and think it was weakened plastic tubing anyway lets hope we have no more problems with it. The play specialist did turn up this morning bringing with her paint, glue and glitter which was the most fun. W was hilarious, pouring the glue out from the tub and putting his hand in it to get it out rather than use a brush. He produced four masterpieces, two in mixed media (bits of shiny and fluffy stuff stuck to paper) and two paintings (rather abstract)!!! The consultant came round too with much the same story, it is matter of time really waiting for W’s insides to sort themselves out and is much what they would expect at this stage. His GCSF gave his white cells a boost to a reasonable 5.something and chivvied up the neutrophils a bit too so we will wait and see what happens to them now. We had a fun afternoon playing with Grandma and mega blocks. All quiet for ¾ hour until W was awoken by the nurses so now he is bouncing around the cot getting very tangled in his lines (uh oh) (at least he was asleep long enough for me to grab some tea). He did give me cause for (minor) alarm earlier when he spat out his chocolate milk but did concede to drink it later on. Still no more milk feed or food. He is losing a bit of weight now so they are keeping a close eye on him so that he gets enough calories from the TPN which always seem to be too much, too little, too much fluid, not enough blah de blah and rather over complicated and it takes at least 2 days to get any revisions through from pharmacy and more if it’s the weekend. The ward is running very low on size 5 nappies (all the cool tots are wearing them this season on Fox), and have run out of mouthcare packs (we use 4 a day) and sterile, wrapped straws (W does like a nice straw) which believe me is a frustrating state of affairs (it’s just that nothing is in my control at the moment).
Tuesday +26
W broke free from his TPN late yesterday evening and it can’t be reconnected so he had fluids overnight instead. This morning he broke free from his newly repaired Hickman line. A sharp tug broke the new ‘fix’ and the was some leakage of the red stuff but a flurry of staff soon had him clamped and the IV team came and repaired it AGAIN with a few harsh words from the senior nurse. Have you ever tried to wrestle a toddler attached to a tall pole with up to 4 (varying) lengths of clear tubing? Well I don’t recommend it!!!! However a few mouth packs and a couple of packs of nappies (to share) have appeared and I haven’t checked for straws!!! Otherwise medically it’s business as usual. William’s white cells are a bit depleted again at 1 point something and his neutophils are back under 1 which is still a bit disappointing but he will most likely have a top up of GCSF tomorrow. He will be having some red blood cells later on as his haemoglobin is a bit low. He has seemed a bit tired today but that may be the shorter nights sleep that he is having as well. I sloped off to London Bridge and met Tasha for lunch today which was divine!!! (ha ha) I had a lovely time and my chocolate stocks have now reached an all time high, hoorah! Rob and William had lots of fun drawing and watching Tractor Ted and Spot. I’m all alone now (ahh) but I’m sure a nurse or two will pop in numerous times this evening so I shall enjoy a moment of peace and listen to W snoring. Our buzzers are broken (and are likely to remain so for a couple of days) so every time we need anything we have to pop out of our rooms to find someone, taking off our aprons and on our return put another one on and wash our hands. This evening as a minimum I will need a flush (the first dose of medicine is already running)(the flush gets the remaining medicine out of the tubes and into William), another dose of medicine, a flush, a heplock (this clears the Hickman line and stops the blood clotting in it) and some fiddling around when the blood transfusion finishes. By 7.30am he will have also had his bloods taken (they do that every morning from his line) and his first medicine started, a flush and another medicine started and his TPN taken down so that’s quite a lot of routine stuff plus they check him every 4 hours and the machines hourly but at least I don’t have to call them to do that! Enough ramblings or my quiet time will be over…….(hope you are not all too bored or think that I’m moaning again either, I want to give you an idea just how much goes on!)
William had his Hickman Line fixed (again) this morning which he didn’t think much of, but they did rule out teeth damage and think it was weakened plastic tubing anyway lets hope we have no more problems with it. The play specialist did turn up this morning bringing with her paint, glue and glitter which was the most fun. W was hilarious, pouring the glue out from the tub and putting his hand in it to get it out rather than use a brush. He produced four masterpieces, two in mixed media (bits of shiny and fluffy stuff stuck to paper) and two paintings (rather abstract)!!! The consultant came round too with much the same story, it is matter of time really waiting for W’s insides to sort themselves out and is much what they would expect at this stage. His GCSF gave his white cells a boost to a reasonable 5.something and chivvied up the neutrophils a bit too so we will wait and see what happens to them now. We had a fun afternoon playing with Grandma and mega blocks. All quiet for ¾ hour until W was awoken by the nurses so now he is bouncing around the cot getting very tangled in his lines (uh oh) (at least he was asleep long enough for me to grab some tea). He did give me cause for (minor) alarm earlier when he spat out his chocolate milk but did concede to drink it later on. Still no more milk feed or food. He is losing a bit of weight now so they are keeping a close eye on him so that he gets enough calories from the TPN which always seem to be too much, too little, too much fluid, not enough blah de blah and rather over complicated and it takes at least 2 days to get any revisions through from pharmacy and more if it’s the weekend. The ward is running very low on size 5 nappies (all the cool tots are wearing them this season on Fox), and have run out of mouthcare packs (we use 4 a day) and sterile, wrapped straws (W does like a nice straw) which believe me is a frustrating state of affairs (it’s just that nothing is in my control at the moment).
Tuesday +26
W broke free from his TPN late yesterday evening and it can’t be reconnected so he had fluids overnight instead. This morning he broke free from his newly repaired Hickman line. A sharp tug broke the new ‘fix’ and the was some leakage of the red stuff but a flurry of staff soon had him clamped and the IV team came and repaired it AGAIN with a few harsh words from the senior nurse. Have you ever tried to wrestle a toddler attached to a tall pole with up to 4 (varying) lengths of clear tubing? Well I don’t recommend it!!!! However a few mouth packs and a couple of packs of nappies (to share) have appeared and I haven’t checked for straws!!! Otherwise medically it’s business as usual. William’s white cells are a bit depleted again at 1 point something and his neutophils are back under 1 which is still a bit disappointing but he will most likely have a top up of GCSF tomorrow. He will be having some red blood cells later on as his haemoglobin is a bit low. He has seemed a bit tired today but that may be the shorter nights sleep that he is having as well. I sloped off to London Bridge and met Tasha for lunch today which was divine!!! (ha ha) I had a lovely time and my chocolate stocks have now reached an all time high, hoorah! Rob and William had lots of fun drawing and watching Tractor Ted and Spot. I’m all alone now (ahh) but I’m sure a nurse or two will pop in numerous times this evening so I shall enjoy a moment of peace and listen to W snoring. Our buzzers are broken (and are likely to remain so for a couple of days) so every time we need anything we have to pop out of our rooms to find someone, taking off our aprons and on our return put another one on and wash our hands. This evening as a minimum I will need a flush (the first dose of medicine is already running)(the flush gets the remaining medicine out of the tubes and into William), another dose of medicine, a flush, a heplock (this clears the Hickman line and stops the blood clotting in it) and some fiddling around when the blood transfusion finishes. By 7.30am he will have also had his bloods taken (they do that every morning from his line) and his first medicine started, a flush and another medicine started and his TPN taken down so that’s quite a lot of routine stuff plus they check him every 4 hours and the machines hourly but at least I don’t have to call them to do that! Enough ramblings or my quiet time will be over…….(hope you are not all too bored or think that I’m moaning again either, I want to give you an idea just how much goes on!)
Monday, 22 October 2007
Drip Drip is that the the Kitchen Tap?
Sunday +24
No, it is the drip of information. It takes along time to find things out in hospital and you need to hear it at least from three different people to know it’s true. Interesting facts this week William will be going home in a week or two, this was quashed by a Doctor on Saturday who said it looks more like three weeks at the earliest as we are so far from GOSH. We got very excited about being allowed out on day 28 because all BMT children are allowed out then, false. It turns out that there are conditions which were not aired at first like that blood counts have to be a little higher than William's and that it’s a bad time of year because all the viruses and bugs are just waking up for the winter. So we will just bide our time and get there in the end.
Today’s magic numbers
WCC 0.68
Neutrophils 0.28
Lymphocytes 0.02
Not such great news with the blood counts today but they have given him a half dose of GCSF (as the last dose was stupendously effective) so that will give them a boost again. It is not unusual for the counts to rise and fall in this way and it might be that the community team monitor his blood counts and that we have GCSF locally when we are discharged. His body can make the cells when given a nudge in the right direction (the GCSF) so he will make them spontaneously in due course. His platelet levels are riding high at over 350.
The other Hickman line developed a hole this morning (I think it maybe mice) so the super nurse fixing team where called. I just got off the phone with Cath at 11.30pm and they have finally arrived and had a look at the line and will be back in the morning. Turns out the Super IV nurse team have just moved office and they don’t know were it is, so have no fixing materials or map. They return in the morning hopefully after locating their office and super glue. This means William has gone to bed with two large sets of plastic clamps on his line, comfort first!
William has drunk 150ml of Choc rice milk today but as soon as it’s in, it’s on it’s way out the nappies are no better (well maybe a bit!). His nappy failed at 2.30am this morning and in the half well maybe quarter light the fact that he had soiled over his line was missed. So this morning with autumn sunlight coming through the window along with the holes we discovered the dirt and samples have be sent for cultures.
We managed to watch three different DVDs other than Tractor Ted and had the radio on as well so hopefully Cath will fall asleep tonight without the theme tune bouncing around her head. Cath manage a trip to the shops to find out they don’t open til 12 in London on a Sunday so took back the jumper she brought yesterday and return with nothing, she is a rubbish shopper when it comes to things for herself.
Undercover exnurse Sue may of blown her cover last week by using blood pressure machine one handed, the nurses are still talking about it remember the red fox flies at midnight.
Well it’s bedtime and as I have a lovely day at work to look forward to in the morning I will sign off to sleep, so good night (morning) from the kitchen.
No, it is the drip of information. It takes along time to find things out in hospital and you need to hear it at least from three different people to know it’s true. Interesting facts this week William will be going home in a week or two, this was quashed by a Doctor on Saturday who said it looks more like three weeks at the earliest as we are so far from GOSH. We got very excited about being allowed out on day 28 because all BMT children are allowed out then, false. It turns out that there are conditions which were not aired at first like that blood counts have to be a little higher than William's and that it’s a bad time of year because all the viruses and bugs are just waking up for the winter. So we will just bide our time and get there in the end.
Today’s magic numbers
WCC 0.68
Neutrophils 0.28
Lymphocytes 0.02
Not such great news with the blood counts today but they have given him a half dose of GCSF (as the last dose was stupendously effective) so that will give them a boost again. It is not unusual for the counts to rise and fall in this way and it might be that the community team monitor his blood counts and that we have GCSF locally when we are discharged. His body can make the cells when given a nudge in the right direction (the GCSF) so he will make them spontaneously in due course. His platelet levels are riding high at over 350.
The other Hickman line developed a hole this morning (I think it maybe mice) so the super nurse fixing team where called. I just got off the phone with Cath at 11.30pm and they have finally arrived and had a look at the line and will be back in the morning. Turns out the Super IV nurse team have just moved office and they don’t know were it is, so have no fixing materials or map. They return in the morning hopefully after locating their office and super glue. This means William has gone to bed with two large sets of plastic clamps on his line, comfort first!
William has drunk 150ml of Choc rice milk today but as soon as it’s in, it’s on it’s way out the nappies are no better (well maybe a bit!). His nappy failed at 2.30am this morning and in the half well maybe quarter light the fact that he had soiled over his line was missed. So this morning with autumn sunlight coming through the window along with the holes we discovered the dirt and samples have be sent for cultures.
We managed to watch three different DVDs other than Tractor Ted and had the radio on as well so hopefully Cath will fall asleep tonight without the theme tune bouncing around her head. Cath manage a trip to the shops to find out they don’t open til 12 in London on a Sunday so took back the jumper she brought yesterday and return with nothing, she is a rubbish shopper when it comes to things for herself.
Undercover exnurse Sue may of blown her cover last week by using blood pressure machine one handed, the nurses are still talking about it remember the red fox flies at midnight.
Well it’s bedtime and as I have a lovely day at work to look forward to in the morning I will sign off to sleep, so good night (morning) from the kitchen.
Sunday, 21 October 2007
Saintly hickman line well holely
Thursday +21
We have had a (reasonably) good nappy day and W has drunk a total of 150mls of chocolate flavoured rice milk! The dieticians will not be increasing his NG milk feed from 5mls/hour until his tummy is more settled still but hopefully at the beginning of next week. Unfortunately the nurse discovered 2 tiny holes (possible bite marks, although I’m not entirely sure that it reaches his mouth, I will have to surreptitiously check as I don’t want to give him any ideas!) in his Hickman line tube this afternoon. After a momentary panic (thinking he would need it replaced, involving another operation) they revealed that they can fix them, phew! A specialist nurse with lots of sterile stuff, snipped the end of and glued another end on and covered it with a cover (what else would you cover it with?) and it now has a splint (the middle of a syringe) bandaged to it for 48 hours until it gets better! We did have to hold William down for several minutes which was a bit traumatic for him but he was very brave and soon got over it. They have had to wait 4 hours before they can use it so some of his meds have been delayed and they are about to attach them now so fingers crossed that it still works!!!!!!! (it does!!)
He has otherwise been a happy chap today and has been playing contentedly with his new toys and even watched a whole 4 episodes of Postman Pat (his first postal encounter) without screaming ‘tract’ (which means please put Tractor Ted on NOW Mummy or I will keep shouting ‘tract’ and cry until you do or until I get bored and play with something else and then try again in a few minutes (or try Grandma now she has learned how to work the DVD player!)) Am happy to have included considerably more brackets than I have been using of late (did you miss them?)!
Friday +22
The consultant popped by this morning for chats about W whom he is still pleased with, progress wise. W was very well and happy today. A play assistant even stopped by for a while (for only the second time during our stay, which has been very disappointing) and W played quite happily with her for a short while, at one point I wasn’t even in the room. Hopefully they are coming back on Monday for more fun play. Unfortunately he woke up around 7.30 this evening and was promptly sick so we watched some TV together for a while which made I nice change, I couldn’t face yet another evening spent in the half light, trying to be calming to get him to go to sleep, so after some more meds and obs he went to sleep again past 10.30 but slept well until 5. I do wonder how on earth we will settle back into a routine at home but I am sure that we will, given a bit of time (after all it only took me a year to get him to sleep all evening!!!!! (Ahh!!!!!))
Saturday +23
It’s Daddy day and the Bloomsbury Festival so there is music and people on stilts which, was pleasant enough to walk around but would have been much more fun in the company of Rob and William. I walked over to Covent Garden this afternoon for a mooch around the shops. A pleasant evening meal with ‘ribena’ (well, illicit wine actually) although W is awake again now but happy. Rob is staying just down the road this week. W’s white cells are back down and his neutophils too so I think we might be in for another boosting dose of GCSF if his counts don’t pick up tomorrow. Our doctor for today went to school in Trowbridge and her parents live in Melksham! And on a Wiltshire note congratulations to St Paul’s Primary School in Chippenham who raised over £250 for Jeans for Genes Day following Rob’s talk (spectacularly because of, or despite of, he is not quite sure!!) The school contact for Jeans for Genes, son also shares our Lifetime nurse, it’s a small genetically challenged world!!!! I was pleased to read that they have found another donor for Luke Hartley and that they will be back in GOS before long (http://www.teamhartley.co.uk/) and wish the family a successful journey through their 5th transplant and can only imagine how hard that will be. Rob was v excited to meet Otto last night and see David and Nicky in their new home (which looks v organised as they have only been there a fortnight and Otto is a week old, they really are superparents!), I was v sad not to be able to go too. Well we must check the rugby score so bfn.
We have had a (reasonably) good nappy day and W has drunk a total of 150mls of chocolate flavoured rice milk! The dieticians will not be increasing his NG milk feed from 5mls/hour until his tummy is more settled still but hopefully at the beginning of next week. Unfortunately the nurse discovered 2 tiny holes (possible bite marks, although I’m not entirely sure that it reaches his mouth, I will have to surreptitiously check as I don’t want to give him any ideas!) in his Hickman line tube this afternoon. After a momentary panic (thinking he would need it replaced, involving another operation) they revealed that they can fix them, phew! A specialist nurse with lots of sterile stuff, snipped the end of and glued another end on and covered it with a cover (what else would you cover it with?) and it now has a splint (the middle of a syringe) bandaged to it for 48 hours until it gets better! We did have to hold William down for several minutes which was a bit traumatic for him but he was very brave and soon got over it. They have had to wait 4 hours before they can use it so some of his meds have been delayed and they are about to attach them now so fingers crossed that it still works!!!!!!! (it does!!)
He has otherwise been a happy chap today and has been playing contentedly with his new toys and even watched a whole 4 episodes of Postman Pat (his first postal encounter) without screaming ‘tract’ (which means please put Tractor Ted on NOW Mummy or I will keep shouting ‘tract’ and cry until you do or until I get bored and play with something else and then try again in a few minutes (or try Grandma now she has learned how to work the DVD player!)) Am happy to have included considerably more brackets than I have been using of late (did you miss them?)!
Friday +22
The consultant popped by this morning for chats about W whom he is still pleased with, progress wise. W was very well and happy today. A play assistant even stopped by for a while (for only the second time during our stay, which has been very disappointing) and W played quite happily with her for a short while, at one point I wasn’t even in the room. Hopefully they are coming back on Monday for more fun play. Unfortunately he woke up around 7.30 this evening and was promptly sick so we watched some TV together for a while which made I nice change, I couldn’t face yet another evening spent in the half light, trying to be calming to get him to go to sleep, so after some more meds and obs he went to sleep again past 10.30 but slept well until 5. I do wonder how on earth we will settle back into a routine at home but I am sure that we will, given a bit of time (after all it only took me a year to get him to sleep all evening!!!!! (Ahh!!!!!))
Saturday +23
It’s Daddy day and the Bloomsbury Festival so there is music and people on stilts which, was pleasant enough to walk around but would have been much more fun in the company of Rob and William. I walked over to Covent Garden this afternoon for a mooch around the shops. A pleasant evening meal with ‘ribena’ (well, illicit wine actually) although W is awake again now but happy. Rob is staying just down the road this week. W’s white cells are back down and his neutophils too so I think we might be in for another boosting dose of GCSF if his counts don’t pick up tomorrow. Our doctor for today went to school in Trowbridge and her parents live in Melksham! And on a Wiltshire note congratulations to St Paul’s Primary School in Chippenham who raised over £250 for Jeans for Genes Day following Rob’s talk (spectacularly because of, or despite of, he is not quite sure!!) The school contact for Jeans for Genes, son also shares our Lifetime nurse, it’s a small genetically challenged world!!!! I was pleased to read that they have found another donor for Luke Hartley and that they will be back in GOS before long (http://www.teamhartley.co.uk/) and wish the family a successful journey through their 5th transplant and can only imagine how hard that will be. Rob was v excited to meet Otto last night and see David and Nicky in their new home (which looks v organised as they have only been there a fortnight and Otto is a week old, they really are superparents!), I was v sad not to be able to go too. Well we must check the rugby score so bfn.
Thursday, 18 October 2007
This is what we can see from our room....
Also there is a floor in the patient hotel, donated by those generous folk of Jersey. The walls are decorated with the loveliest pictures of the island, cows, castles and lighthouses drawn by children of Jersey. The most loveliest is of a child drawing in the sand and the message reads Get Well Soon. I will take a picture before we leave.
News from the chilly big smoke.
Tuesday +19
Last night the TPN wouldn’t stop beeping ‘air in line’ so in the end they turned it off. Daddy arrived bright and early with coffee and gifts. I ventured out to Oxford Street and the delights of John Lewis and got William a great new piano keyboard type toy with animal noises, exactly the kind of thing I thoroughly disapprove of!! His counts have fallen considerably the neutrophils are now only 0.75 and his white cells less than 3 so after some more ‘discussion’ they did finally give him the GCSF. William had a wakeful evening and a couple of new sets of sheets (sick and leaky nappies, if that’s not too much detail!). He finally went to sleep again just before midnight, the nurses telling me that he didn’t need anything else medicine/most likely to disturb him type procedures (except the usual ‘observations’ and the routine checking of pumps) until 5am so hopeful of a few hours consecutive sleep I put my head down but they were back at 2am with some extensive rustling and IV fluids to make up for the nappies so we dream (well, day dream) of uninterrupted nights! Granma, Pappa, Auntie Nick, Hannah, Ella, Mary and Gillie all feature on a fabulous ‘movie’ that Rob brought up. William’s face lit up at the sight and sound of his favourite cousins, beloved dog and seeing Granma and Pappa (A. Nicky was the camera operator). Gillie has a fabulous (VERY short) new haircut that makes him less of a mud magnet and much more post transplant friendly (Thank you, Harriet!).
Wednesday +20
Met up with Phyllis and Dad today for a lovely lunch including wine, chocolate meringues and great conversation. Phyllis was laden with bags from Hamleys full of presents for me and William from her and Helene and George so thank you all very much. My boy is going to be thoroughly spoiled by the time he leaves here and those terrible twos are going to be quite a challenge!!! William drank his ‘Rice Dream’ with Nesquik chocolate flavour (sorry Tash it’s Nestle I know but what’s a girl to do?) so that’s encouraging. He would have drunk more (and was quite cross when no more appeared) but I didn’t want him to overdo it. Today his counts have shot up and we now have excessive numbers of all sorts of things. Even the nurses were a bit incredulous when they read neutrophils of 16 (from 0.75 overnight) and White Cells of 17.06! His platelets (which are unaffected by the GCSF) are holding good and high (409 today). We will see where they level out at this time, so fingers crossed we have still got a way to go yet. There is another (almost) 20 month old on the block now, Isaac so another playmate for William once he is allowed out and about (well, to the playroom that is 3 metres away, at least!) We had an interesting chat with his Dad about genetic disorders. They had been home from GOS for a month following BMT but have been in hospital locally for a couple of weeks and are now back here struggling with GVHD. Nana, a little girl along the corridor is being rushed to theatre this evening, I am not sure what is wrong but she is only about 7 (at a rough guess, I’ve only seen her lying in her bed through partly drawn curtains, she’s only been back a couple of weeks from intensive care) and the nurses said that her Mum will probably not get back here before she goes in, so please pray for her.
Nana is back from theatre in her room and her Mum is with her today so everything seems to be ok for now, fingers crossed (thurs am).
Last night the TPN wouldn’t stop beeping ‘air in line’ so in the end they turned it off. Daddy arrived bright and early with coffee and gifts. I ventured out to Oxford Street and the delights of John Lewis and got William a great new piano keyboard type toy with animal noises, exactly the kind of thing I thoroughly disapprove of!! His counts have fallen considerably the neutrophils are now only 0.75 and his white cells less than 3 so after some more ‘discussion’ they did finally give him the GCSF. William had a wakeful evening and a couple of new sets of sheets (sick and leaky nappies, if that’s not too much detail!). He finally went to sleep again just before midnight, the nurses telling me that he didn’t need anything else medicine/most likely to disturb him type procedures (except the usual ‘observations’ and the routine checking of pumps) until 5am so hopeful of a few hours consecutive sleep I put my head down but they were back at 2am with some extensive rustling and IV fluids to make up for the nappies so we dream (well, day dream) of uninterrupted nights! Granma, Pappa, Auntie Nick, Hannah, Ella, Mary and Gillie all feature on a fabulous ‘movie’ that Rob brought up. William’s face lit up at the sight and sound of his favourite cousins, beloved dog and seeing Granma and Pappa (A. Nicky was the camera operator). Gillie has a fabulous (VERY short) new haircut that makes him less of a mud magnet and much more post transplant friendly (Thank you, Harriet!).
Wednesday +20
Met up with Phyllis and Dad today for a lovely lunch including wine, chocolate meringues and great conversation. Phyllis was laden with bags from Hamleys full of presents for me and William from her and Helene and George so thank you all very much. My boy is going to be thoroughly spoiled by the time he leaves here and those terrible twos are going to be quite a challenge!!! William drank his ‘Rice Dream’ with Nesquik chocolate flavour (sorry Tash it’s Nestle I know but what’s a girl to do?) so that’s encouraging. He would have drunk more (and was quite cross when no more appeared) but I didn’t want him to overdo it. Today his counts have shot up and we now have excessive numbers of all sorts of things. Even the nurses were a bit incredulous when they read neutrophils of 16 (from 0.75 overnight) and White Cells of 17.06! His platelets (which are unaffected by the GCSF) are holding good and high (409 today). We will see where they level out at this time, so fingers crossed we have still got a way to go yet. There is another (almost) 20 month old on the block now, Isaac so another playmate for William once he is allowed out and about (well, to the playroom that is 3 metres away, at least!) We had an interesting chat with his Dad about genetic disorders. They had been home from GOS for a month following BMT but have been in hospital locally for a couple of weeks and are now back here struggling with GVHD. Nana, a little girl along the corridor is being rushed to theatre this evening, I am not sure what is wrong but she is only about 7 (at a rough guess, I’ve only seen her lying in her bed through partly drawn curtains, she’s only been back a couple of weeks from intensive care) and the nurses said that her Mum will probably not get back here before she goes in, so please pray for her.
Nana is back from theatre in her room and her Mum is with her today so everything seems to be ok for now, fingers crossed (thurs am).
Tuesday, 16 October 2007
Comments
Thanks for all your support and encouragement folks, it is SO much appreciated. Thanks for the offer Caroline but I'm not sure if we want William to grow roots here! TPN is Total Parental (think that this word is right, but not in the sense of parents as I previously imagined! it's as opposed to Enteral which is into the tummy) Nutrition and is the intra veneous 'food' that he is having. Alex, hope you are good with NG tubes as we seem to be getting through a few!
Lots of love everyone
Catherine x
Lots of love everyone
Catherine x
More from the Fox!
Friday +15 and a bit more of Thursday.
Thursday afternoon, William asked for something to eat by trying to clamber into his highchair and pointing frantically at his bib. I gave him some rice milk, as recommended, which he drank 50 mls of. The latter part of the evening proved a bit too exciting with W accidentally catching his NG tube and pulling it out. The second nurse to try got it back in but on the first two attempts W got himself in a right stew and did a rather scary retching/breathe holding trick which has given me a whole new set of grey hairs! He had a milk feed overnight which seemed to give him stomach cramps and he (and as a result, I) slept terribly. He slept this morning until 9.50am…I don’t think that he has EVER slept that late no matter how disrupted the nights (and believe me, we’ve shared a few of them!) Immunoglobulins were infused overnight uneventfully.
This morning we discovered that we are now on Yellow Precautions, our green poster has been replaced by a, yes you’ve guessed it, a yellow one! Unfortunately due to the large WARNING LURGY poster next to it, it is not the freedom pass that we were hoping for. The virus means that we still need to wear aprons and that W is still not allowed out into the corridor or the playroom for the moment. He watches the others through the glass door rather forlornly but it won’t be for too long, we hope. The consultant was pleased with his progress this morning and revealed that he commutes from Bristol and has a Labrador, so we must be in good hands!!
He was a little bit sick again this afternoon but then drank 150ml of ‘Rice Dream’. His nappies are once again frequent and they are putting up milk overnight again but still at only 5 mls/hour. He has been having tummy cramps again this evening but the nurse has just said that she can rustle up a better medicine than the codeine for the spasms. I’m also a bit worried that W has a cold brewing. He is now wide-awake reading his lift the flap Diggers book so it looks like we are in for another long evening…
Saturday +16
W was sick twice this morning so an eventful start but then was much chirpier through the day. He slept all evening for us so Rob dashed out for takeaway pizza and I had an illicit baby bottle of wine in a mug and we watched a few episodes of Spaced on DVD (thanks B). Rob went over the road, literally to his accommodation; it was nice to know that he was nearby. William woke up shortly after he left and was in a bit of discomfort so we got him some medicines and he calmed down shortly afterwards and we had a reasonable sleep with only a couple of interruption until 5am when he got a bit disturbed but settled again by 6.
Sunday +17
As Rob left the nurses accidentally woke William up after only ½ hour sleep and then he wouldn’t settle until after 10.30. He had a few rather dramatic nappies so they put up some extra IV fluid to replace his losses! He spent a long time playing contentedly with his cuddlies and a pen torch that one of the nurses gave him.
Monday +18
It was Grandma day again and a fresh supply of toys and tales of train rides. The Consultant came around this morning. He is still pleased with William’s progress but as his counts have fallen and because of the virus they will give him some more GCSF to give those cell counts a bit of a boost to help protect his gut lining. He is 100% engrafted which means all the cells are the donors and none there are no faulty Wiskott-Aldrich genes remaining…..
The Dietician also came by and we are to continue to offer just rice milk for a few more days until his tummy is a bit more rested. He had one sip today and pulled a face as he did yesterday but the first two days he had it he liked it. So he has only had water again today. His weight has only dropped a kilo since we came in and he is weighed twice daily so they won’t let him get too skinny. The introduction of food will also come gradually and be dairy/wheat free and that kind of thing initially and we will add new foods on alternate days to check that he tolerates them but all that is a little way ahead of us yet.
He is asleep for the moment and I think the nurses will be in soon with his TPN and the start of his evening IV medicines so I will say goodbye.
Thursday afternoon, William asked for something to eat by trying to clamber into his highchair and pointing frantically at his bib. I gave him some rice milk, as recommended, which he drank 50 mls of. The latter part of the evening proved a bit too exciting with W accidentally catching his NG tube and pulling it out. The second nurse to try got it back in but on the first two attempts W got himself in a right stew and did a rather scary retching/breathe holding trick which has given me a whole new set of grey hairs! He had a milk feed overnight which seemed to give him stomach cramps and he (and as a result, I) slept terribly. He slept this morning until 9.50am…I don’t think that he has EVER slept that late no matter how disrupted the nights (and believe me, we’ve shared a few of them!) Immunoglobulins were infused overnight uneventfully.
This morning we discovered that we are now on Yellow Precautions, our green poster has been replaced by a, yes you’ve guessed it, a yellow one! Unfortunately due to the large WARNING LURGY poster next to it, it is not the freedom pass that we were hoping for. The virus means that we still need to wear aprons and that W is still not allowed out into the corridor or the playroom for the moment. He watches the others through the glass door rather forlornly but it won’t be for too long, we hope. The consultant was pleased with his progress this morning and revealed that he commutes from Bristol and has a Labrador, so we must be in good hands!!
He was a little bit sick again this afternoon but then drank 150ml of ‘Rice Dream’. His nappies are once again frequent and they are putting up milk overnight again but still at only 5 mls/hour. He has been having tummy cramps again this evening but the nurse has just said that she can rustle up a better medicine than the codeine for the spasms. I’m also a bit worried that W has a cold brewing. He is now wide-awake reading his lift the flap Diggers book so it looks like we are in for another long evening…
Saturday +16
W was sick twice this morning so an eventful start but then was much chirpier through the day. He slept all evening for us so Rob dashed out for takeaway pizza and I had an illicit baby bottle of wine in a mug and we watched a few episodes of Spaced on DVD (thanks B). Rob went over the road, literally to his accommodation; it was nice to know that he was nearby. William woke up shortly after he left and was in a bit of discomfort so we got him some medicines and he calmed down shortly afterwards and we had a reasonable sleep with only a couple of interruption until 5am when he got a bit disturbed but settled again by 6.
Sunday +17
As Rob left the nurses accidentally woke William up after only ½ hour sleep and then he wouldn’t settle until after 10.30. He had a few rather dramatic nappies so they put up some extra IV fluid to replace his losses! He spent a long time playing contentedly with his cuddlies and a pen torch that one of the nurses gave him.
Monday +18
It was Grandma day again and a fresh supply of toys and tales of train rides. The Consultant came around this morning. He is still pleased with William’s progress but as his counts have fallen and because of the virus they will give him some more GCSF to give those cell counts a bit of a boost to help protect his gut lining. He is 100% engrafted which means all the cells are the donors and none there are no faulty Wiskott-Aldrich genes remaining…..
The Dietician also came by and we are to continue to offer just rice milk for a few more days until his tummy is a bit more rested. He had one sip today and pulled a face as he did yesterday but the first two days he had it he liked it. So he has only had water again today. His weight has only dropped a kilo since we came in and he is weighed twice daily so they won’t let him get too skinny. The introduction of food will also come gradually and be dairy/wheat free and that kind of thing initially and we will add new foods on alternate days to check that he tolerates them but all that is a little way ahead of us yet.
He is asleep for the moment and I think the nurses will be in soon with his TPN and the start of his evening IV medicines so I will say goodbye.
Monday, 15 October 2007
Sunday, 14 October 2007
View from the Kitchen
Well the view from the kitchen is not great but that is because it’s dark outside. I’m back in the kitchen at the computer after returning from London five minutes ago this will be quick as Cath is going to post Friday and Saturday’s news on Tuesday along with Monday’s, so that means I ‘m going to tell you about Sunday I think that’s clear. Well I managed to get a room in the parent’s hotel so I was able to stay up in town Saturday night and it was nice to sleep with Cath again even though there were two brick walls a gap of some ten metres and a drop of 25 between us, we were able to wave good night across the street though.
William decided that everything is going to well and although his platelets are above four hundred which means he has the same number as you dear reader. The rest of is blood count is dropping off fasted as he fights the virus, this afternoon his temperature was up a little but started to come back normally without potions. We where on the seventh Tractor Ted DVD thinking how well William’s insides were performing when in the space of half an hour he went through three nappies (note the way I managed not to have to spell Diarrhoea) but he as not been sick today which is good and only went green when he tried some rice milk (Cath has tried it too and she went green as well). As always his mood is good and never better than when cleaning his teeth, four times a day is just not enough! This virus is just to remind us that we are only on day 16 and it is along way to the 100 day mile stone and when you get lemons make lemonade, Cath is learning a lot about farming and should never be stuck for something to talk to her father in law about again.
Congratulations to Dave and Nicky on their new son (the best kind of baby) born on Thursday and also congratulations to Grandma and Grandpa Pepper as I know you are following Williams progress as well. And keeping Dave informed of what is happening as he is getting use to Fatherhood and more importantly not having the Internet fixed up in the new house yet.
William decided that everything is going to well and although his platelets are above four hundred which means he has the same number as you dear reader. The rest of is blood count is dropping off fasted as he fights the virus, this afternoon his temperature was up a little but started to come back normally without potions. We where on the seventh Tractor Ted DVD thinking how well William’s insides were performing when in the space of half an hour he went through three nappies (note the way I managed not to have to spell Diarrhoea) but he as not been sick today which is good and only went green when he tried some rice milk (Cath has tried it too and she went green as well). As always his mood is good and never better than when cleaning his teeth, four times a day is just not enough! This virus is just to remind us that we are only on day 16 and it is along way to the 100 day mile stone and when you get lemons make lemonade, Cath is learning a lot about farming and should never be stuck for something to talk to her father in law about again.
Congratulations to Dave and Nicky on their new son (the best kind of baby) born on Thursday and also congratulations to Grandma and Grandpa Pepper as I know you are following Williams progress as well. And keeping Dave informed of what is happening as he is getting use to Fatherhood and more importantly not having the Internet fixed up in the new house yet.
Thursday, 11 October 2007
More from Tuesday +12
Wow as previously mentioned those cells are certainly getting a shift on. William does have a virus that is contributing to the diarrhoea (is there anyone who can spell that without a spellchecker? Apparently Mum can so maybe it’s just me!) There is nothing that they can do for it, just make sure that the fluid he loses is replaced. Hopefully he will be able to fight it off pretty quickly.
Wednesday +13
WCC 10.93
Neutro 8.46
Lymph 0.41
Platelets 290
More great numbers today. I sloped off to the British Museum for an hour today, its only a 10 minute walk away which was most culturally enlightening! I bought a guide book so am now authority on ancient civilisations~!~!! A wakeful evening for William again, he didn’t sleep (after his initial nap) until midnight. He was happy enough in himself although a little disappointed not to be allowed to watch Tractor Ted or play with his new Duplo after hours. I think his routine is just so disrupted with those blood pressure, temperature, pulse, pump checks and lots of noisy bins. He is MUCH better having his BP taken now. He likes to help and put the cream on the sensor. They have to do it manually with the Doppler machine because then the cuff doesn’t squeeze quite so tight. Otherwise more of the same stuff. He was a tiny bit sick but there really wasn’t anything in his stomach except some toothpaste!!!
Thursday +14
Platelets 330
WCC 8.51, Neutro 5.84
We have come a long way in two weeks. Some of his counts are a bit down on yesterday but look at those platelets go! They are lower because he didn’t have the GCSF yesterday which boosts them up, so I guess these are all without artificial help. Billy, next door and Keller are both on their way home today which is exciting and scary for them and their parents. The TPN that William is on costs £1000 a day!! So I hope its yummy (although it obviously isn’t cos it goes in his veins not in his tummy)! They are going to put a bit of a milk feed later to see if his tummy is up to it so will report back in due course. The sun is shining so as soon as W is awake and happy playing with Grandma I will be off to the internet café. Jack is much better by all accounts and there is talk of Lucy going home next week.
Happy Anniversary Lisa and Nuri, lots of love to you both, card on the way postal strikes permitting!
Wow as previously mentioned those cells are certainly getting a shift on. William does have a virus that is contributing to the diarrhoea (is there anyone who can spell that without a spellchecker? Apparently Mum can so maybe it’s just me!) There is nothing that they can do for it, just make sure that the fluid he loses is replaced. Hopefully he will be able to fight it off pretty quickly.
Wednesday +13
WCC 10.93
Neutro 8.46
Lymph 0.41
Platelets 290
More great numbers today. I sloped off to the British Museum for an hour today, its only a 10 minute walk away which was most culturally enlightening! I bought a guide book so am now authority on ancient civilisations~!~!! A wakeful evening for William again, he didn’t sleep (after his initial nap) until midnight. He was happy enough in himself although a little disappointed not to be allowed to watch Tractor Ted or play with his new Duplo after hours. I think his routine is just so disrupted with those blood pressure, temperature, pulse, pump checks and lots of noisy bins. He is MUCH better having his BP taken now. He likes to help and put the cream on the sensor. They have to do it manually with the Doppler machine because then the cuff doesn’t squeeze quite so tight. Otherwise more of the same stuff. He was a tiny bit sick but there really wasn’t anything in his stomach except some toothpaste!!!
Thursday +14
Platelets 330
WCC 8.51, Neutro 5.84
We have come a long way in two weeks. Some of his counts are a bit down on yesterday but look at those platelets go! They are lower because he didn’t have the GCSF yesterday which boosts them up, so I guess these are all without artificial help. Billy, next door and Keller are both on their way home today which is exciting and scary for them and their parents. The TPN that William is on costs £1000 a day!! So I hope its yummy (although it obviously isn’t cos it goes in his veins not in his tummy)! They are going to put a bit of a milk feed later to see if his tummy is up to it so will report back in due course. The sun is shining so as soon as W is awake and happy playing with Grandma I will be off to the internet café. Jack is much better by all accounts and there is talk of Lucy going home next week.
Happy Anniversary Lisa and Nuri, lots of love to you both, card on the way postal strikes permitting!
Tuesday, 9 October 2007
Stop Press!
Williams white cell count today is 5.54 hoorah! his platelets are 268!!! which is amazing. Those stem cells really are magic!! His neutrophils are 3.54 (over 1 is fab!!!) His lymphocytes are also there but I can't remember the number. I think it might be time to be more than cautiously optomistic!!!!!! Hoorah!!!
I have just been on a tube ride to Marble Arch for a spot of retail therapy (to prevent reoccurence of yesterday's fashion horror) and W is currently snoozing. It is pouring with rain in case anyone was wondering and have observed that people on the tube mainly wear black and don't smile!
Anyway enough idle chit chat
bfn C xx
I have just been on a tube ride to Marble Arch for a spot of retail therapy (to prevent reoccurence of yesterday's fashion horror) and W is currently snoozing. It is pouring with rain in case anyone was wondering and have observed that people on the tube mainly wear black and don't smile!
Anyway enough idle chit chat
bfn C xx
The Fox Report
Saturday +9
William had a much better morning nappy wise but things had reverted by the afternoon which was a bit disappointing. W pulled his NG tube out again by accident so another one was fitted much to his dismay. I spent a lovely long lunchtime with Bryher. We tripped down to Covent Garden and had a nice wander around, lunch and saw some street theatre which was funny. It was weird to be in such a busy place and I returned much refreshed. Sadly Rob couldn’t stay at the patient hotel so our evening together was cut short as he headed back to Winchester.
Sunday +10 and 20 months old
White Cells 0.13
Neutrophils 0.02
Lymphocytes 0.03
We are hoping that although these counts are small, they are not insignificant. William and his nappy situation continues but he remains in generally good spirits. Today his hair will come out if tugged gently so that’s the start of that then. Ruth and Philip came up today and took me out to lunch. So we had a nice chat and a wander and Philip enjoyed seeing the squirrels in Russell Square! William now has a super wooden JCB digger added to his vehicle collection, which he loves. It does seem a long time since we were at home and doing more ‘normal’ things but I am sure that as soon as we are back this experience will feel similarly distant. William was very tired around 5 and slept for a couple of hours and is now proving impossible to settle. However his early nap did allow me to nip out for a pint with Tasha that was very welcome and a bit of a release. Rob has returned reluctantly to The Courts but will be back on Tuesday and that is not as long away as it seems. We will have Grandma with us tomorrow with tales of trains, boats and Grandpa.
Monday +11
The Consultants have been around this morning and are v pleased with William. He had a good night in the end and we slept reasonably late. I am sitting in the café trying to get on line and failing so will try and get out when Rob is with me tomorrow. Am wearing ridiculous uncoordinated and unseasonable outfit as seem to have run out of clothes this week, too much sick and poo!! Looking forward to fresh clothes delivery tomorrow courtesy of Ruth (thank you). William has been quite cuddly today but his counts are rising which is great. His Cyclosporin (an immunosuppresant that helps prevent GVHD) levels are a bit high today so he is going to miss a couple of doses to let his body catch up which is fine. One of the nurses explained Graft versus Host Disease to me the other day so I thought I would share it with you all. When you have an organ transplant your immune system attacks the organ as ‘alien’, when you have a stem cell/marrow transplant it is the immune system itself that is the alien, it doesn’t recognise the new host body initially (it has an idea because of the previous tissue matching) so it can trigger an attack on the whole body. The immunosuppresants help weaken the newly installed donor immune system to give it a chance to get to know the new body before it lets rip with all guns blazing! They will do an engraftment test next week or thereabouts to check that it is the donor cells rather than Williams own cells (having staged an extraordinary recovery) producing the new counts but as long as his platelet levels stay high we can be quite confident that it is the new ones working because Williams own can’t maintain or produce high platelet levels.
Jack (10 months) and his parents are having a difficult time at the moment, Jack has some GVHD and is suffering with fluid retention in his liver and kidneys which has made him swell up quite a lot. He has run out of smiles for the moment so we do hope that he gets some more in stock soon. Lucy, next door has been out of her room for the first time today so that is encouraging and means that her neutrophils are over 1 so that she can start to fight of infection for herself.
Today has been exhausting emotionally and I don’t seem to be very good company on a Monday (sorry Mum!) but am feeling surprisingly chatty now, in case you hadn’t noticed but must rest my weary head in anticipation of tonight’s nursing visits and in an effort to be bright eyed and bushy tailed for my dear Mr Curtis tomorrow (who is currently reading Pride and Prejudice).
Ooh forgot to mention, still lots of nappies, boo and no food. Just the TPN and some dioralyte for a while longer and then a light diet next week when we hope that his gut will have had a rest and be healed. Amazingly he is not losing weight and is not missing his food either (which is weird). Just as well we can’t eat in the room anyway though I would feel too guilty eating in front of him.
William had a much better morning nappy wise but things had reverted by the afternoon which was a bit disappointing. W pulled his NG tube out again by accident so another one was fitted much to his dismay. I spent a lovely long lunchtime with Bryher. We tripped down to Covent Garden and had a nice wander around, lunch and saw some street theatre which was funny. It was weird to be in such a busy place and I returned much refreshed. Sadly Rob couldn’t stay at the patient hotel so our evening together was cut short as he headed back to Winchester.
Sunday +10 and 20 months old
White Cells 0.13
Neutrophils 0.02
Lymphocytes 0.03
We are hoping that although these counts are small, they are not insignificant. William and his nappy situation continues but he remains in generally good spirits. Today his hair will come out if tugged gently so that’s the start of that then. Ruth and Philip came up today and took me out to lunch. So we had a nice chat and a wander and Philip enjoyed seeing the squirrels in Russell Square! William now has a super wooden JCB digger added to his vehicle collection, which he loves. It does seem a long time since we were at home and doing more ‘normal’ things but I am sure that as soon as we are back this experience will feel similarly distant. William was very tired around 5 and slept for a couple of hours and is now proving impossible to settle. However his early nap did allow me to nip out for a pint with Tasha that was very welcome and a bit of a release. Rob has returned reluctantly to The Courts but will be back on Tuesday and that is not as long away as it seems. We will have Grandma with us tomorrow with tales of trains, boats and Grandpa.
Monday +11
The Consultants have been around this morning and are v pleased with William. He had a good night in the end and we slept reasonably late. I am sitting in the café trying to get on line and failing so will try and get out when Rob is with me tomorrow. Am wearing ridiculous uncoordinated and unseasonable outfit as seem to have run out of clothes this week, too much sick and poo!! Looking forward to fresh clothes delivery tomorrow courtesy of Ruth (thank you). William has been quite cuddly today but his counts are rising which is great. His Cyclosporin (an immunosuppresant that helps prevent GVHD) levels are a bit high today so he is going to miss a couple of doses to let his body catch up which is fine. One of the nurses explained Graft versus Host Disease to me the other day so I thought I would share it with you all. When you have an organ transplant your immune system attacks the organ as ‘alien’, when you have a stem cell/marrow transplant it is the immune system itself that is the alien, it doesn’t recognise the new host body initially (it has an idea because of the previous tissue matching) so it can trigger an attack on the whole body. The immunosuppresants help weaken the newly installed donor immune system to give it a chance to get to know the new body before it lets rip with all guns blazing! They will do an engraftment test next week or thereabouts to check that it is the donor cells rather than Williams own cells (having staged an extraordinary recovery) producing the new counts but as long as his platelet levels stay high we can be quite confident that it is the new ones working because Williams own can’t maintain or produce high platelet levels.
Jack (10 months) and his parents are having a difficult time at the moment, Jack has some GVHD and is suffering with fluid retention in his liver and kidneys which has made him swell up quite a lot. He has run out of smiles for the moment so we do hope that he gets some more in stock soon. Lucy, next door has been out of her room for the first time today so that is encouraging and means that her neutrophils are over 1 so that she can start to fight of infection for herself.
Today has been exhausting emotionally and I don’t seem to be very good company on a Monday (sorry Mum!) but am feeling surprisingly chatty now, in case you hadn’t noticed but must rest my weary head in anticipation of tonight’s nursing visits and in an effort to be bright eyed and bushy tailed for my dear Mr Curtis tomorrow (who is currently reading Pride and Prejudice).
Ooh forgot to mention, still lots of nappies, boo and no food. Just the TPN and some dioralyte for a while longer and then a light diet next week when we hope that his gut will have had a rest and be healed. Amazingly he is not losing weight and is not missing his food either (which is weird). Just as well we can’t eat in the room anyway though I would feel too guilty eating in front of him.
Saturday, 6 October 2007
Feeling Brighter
William really is doing so well so far. So many of the other children are suffering much more and their parents too. Thanks for all you support, everyone. Good luck to David and Nicky as baby time approaches and our prayers are also with Roy and Mary.
love
Catherine xxx
love
Catherine xxx
More from Fox Ward
Wednesday +6
Not much sleep on this ward again last night and my mood not lightened by the nurses breezing in and out saying oh, he doesn’t look at all sleepy does he and then realising his nappy needed changing (again) every time he was just drifting off to sleep. Anyway we both managed some snoozles later in the morning which helped a bit. I know we have so many people rooting for us and that encourages me, as do surprise phone calls and cards (Thank you). I am trying hard not to feel gloomy, William is doing so well so far we have so much to be grateful for. Daniella, George and Ivanlyo stopped by the ward today to see us (breaking all policy but I think they have recent resident exemption) which was so kind of them. Ivanlyo is doing really well and they were full of empathy and encouragement. It’s an early night for me (ha de ha) W is having some more platelets later, when they get here, as well as all the usual comings and goings so I will get my head down whilst there is still over an hour to go on the Cyclosporin…..ps still no milk feed, mainly cos the dietician didn’t order it in time for tonight and the dioralyte came up with a different patient name on it so just water overnight yum yum.
Thursday and Friday +7 and +8
Topped up successfully with platelets over night. William had a better day today with fewer nappies. The Dieticians wanted him to go milk free for a few days which sent me into a panic as pretty much the only things that I have been able to tempt him with over the last week have been dairy based. However as I write this on Friday afternoon the plan has been revised and the Doctors have prescribed TPN (Total Parental?! Nutrition) for him which will run continuously and he will have a few days with no other food and just clear fluids to give his poor tummy and gut a rest. Each time he has eaten today (well only twice) he has been in some discomfort immediately afterwards so I think the food is aggravating his insides now. He was sick last night just as he was bathed and settled into a nice clean bed and as Nick arrived to take me out to dinner. Unfortunately as previously these spectacular sick episodes result in his NG tube coming out. They were very quick to put another one in and he was bathed and happy again before too long so I was able to go out leaving him happy with Grandma. I think he had a great evening being allowed to watch Tractor Ted after hours! I too had a delicious meal in good company and returned refreshed. This morning William has been very clingy and a bit subdued. The consultant visited this morning and remembered that he had met us briefly when we went to Bristol for his bone marrow biopsy in May 06. That seems so long ago now. They seem pretty pleased with him and all our concerns about William’s physical symptoms are very standard and to be expected at this stage of the treatment. Jack the little 10 month old SCID baby is a day ahead of W with his treatment and he started to lose his hair yesterday. I have been anxious since his Mum told me that and keep frantically tugging at Williams to make sure it is still firmly attached. Whilst I know that this will inevitably not last I think it will take me a little while to deal with this despite the fact that it is one side effect of treatment that is only temporary and won’t hurt! William started a new medicine today called GCSF to help boost his white blood cells and neutrophils so lets hope that magic works over the next few days.
Not much sleep on this ward again last night and my mood not lightened by the nurses breezing in and out saying oh, he doesn’t look at all sleepy does he and then realising his nappy needed changing (again) every time he was just drifting off to sleep. Anyway we both managed some snoozles later in the morning which helped a bit. I know we have so many people rooting for us and that encourages me, as do surprise phone calls and cards (Thank you). I am trying hard not to feel gloomy, William is doing so well so far we have so much to be grateful for. Daniella, George and Ivanlyo stopped by the ward today to see us (breaking all policy but I think they have recent resident exemption) which was so kind of them. Ivanlyo is doing really well and they were full of empathy and encouragement. It’s an early night for me (ha de ha) W is having some more platelets later, when they get here, as well as all the usual comings and goings so I will get my head down whilst there is still over an hour to go on the Cyclosporin…..ps still no milk feed, mainly cos the dietician didn’t order it in time for tonight and the dioralyte came up with a different patient name on it so just water overnight yum yum.
Thursday and Friday +7 and +8
Topped up successfully with platelets over night. William had a better day today with fewer nappies. The Dieticians wanted him to go milk free for a few days which sent me into a panic as pretty much the only things that I have been able to tempt him with over the last week have been dairy based. However as I write this on Friday afternoon the plan has been revised and the Doctors have prescribed TPN (Total Parental?! Nutrition) for him which will run continuously and he will have a few days with no other food and just clear fluids to give his poor tummy and gut a rest. Each time he has eaten today (well only twice) he has been in some discomfort immediately afterwards so I think the food is aggravating his insides now. He was sick last night just as he was bathed and settled into a nice clean bed and as Nick arrived to take me out to dinner. Unfortunately as previously these spectacular sick episodes result in his NG tube coming out. They were very quick to put another one in and he was bathed and happy again before too long so I was able to go out leaving him happy with Grandma. I think he had a great evening being allowed to watch Tractor Ted after hours! I too had a delicious meal in good company and returned refreshed. This morning William has been very clingy and a bit subdued. The consultant visited this morning and remembered that he had met us briefly when we went to Bristol for his bone marrow biopsy in May 06. That seems so long ago now. They seem pretty pleased with him and all our concerns about William’s physical symptoms are very standard and to be expected at this stage of the treatment. Jack the little 10 month old SCID baby is a day ahead of W with his treatment and he started to lose his hair yesterday. I have been anxious since his Mum told me that and keep frantically tugging at Williams to make sure it is still firmly attached. Whilst I know that this will inevitably not last I think it will take me a little while to deal with this despite the fact that it is one side effect of treatment that is only temporary and won’t hurt! William started a new medicine today called GCSF to help boost his white blood cells and neutrophils so lets hope that magic works over the next few days.
Tuesday, 2 October 2007
Why I hate Mondays!
Monday +4
Well I was in bed asleep by 8 last night but an hour later the nurses were doing their usual and were in and out every few minutes doing something or other so it was past midnight before I slept for a bit again. William slept reasonably through most of the cafuffle and beeping though. He has been a good, brave boy today. He ate a whole slice of toast this morning. Unfortunately his NG tube came out again, the plaster holding it in place had seen better days. He screamed and went v red when they put a new one in but he soon forgave the nurses. The play assistant finally pitched up to offer ‘helpful’ suggestions on ways to get William more comfortable with having his BP taken, sadly she had nothing new to offer but was at least impressed by Grandma’s latest acquisition of a toy BP cuff with pumping action! I escaped for a breath of fresh air and my routine trip to Waitrose leaving William in Grandma and Tractor Teds capable hands. It was also dressing changing day for his Hickman line so more torture for the poor wee man but we did it mid Jaffa cakes so at least there was a chocolatey reward at the end. A different Consultant breezed by this morning (a small team rotate every 6 weeks so hopefully we won’t be here to meet the next one) who seemed nice enough and not worried about W at this stage. W was less struck on him but is now wary of people he doesn’t recognise wearing plastic aprons. We were glad of Grandmas company today on what has been one of the more wearing days. Keller the 9 years old a couple of doors up was allowed out of his room for the first time post transplant today so that gives us all hope to see him walking up and down the corridor. I am very proud of Robert today who went to a primary school in Chippenham and did a talk for Jeans for Genes day in front of an audience of over 250 children. Did you know you share 50% of your genes with a banana?
Tuesday +5
A rather traumatic evening for W last night, his NG tube was somehow blocked and they had to put a new one in. Two in one day isn’t much fun at all, for anyone. Anyway we were finally resettled just past midnight so were only just waking up, mostly thanks to the fire alarm which someone’s toast sets off most mornings, when Daddy arrived laden with goodies once again. In the past few days we have changed A LOT of nappies not to put too finer point on it and his petit derriere is suffering. He has been having Dioralyte through his NG tube at a fairly slow rate all night and day plus the odd IV fluid top up. He is not losing weight at the moment which is good and they will probably put a milk feed up tomorrow and see how his tummy copes with that. He is encouraged to eat anything he likes and today has taken advantage of that with chocolate buttons and jelly tots a plenty and just a small bite of pear and spoonful of yoghurt. The last couple of days have felt long and tiring, the end seems a long way away and the frequent nurse visits, especially when he is just dropping off to sleep have become increasingly tiresome. I popped into the chapel today which is beautiful. Very ornate, apparently they moved the whole thing from a different building. I am reliably informed that it was featured on Blue Peter some years ago. William is about to be freed from his tubes for an hours run around before bath and bed and more tubes so I shall go and enjoy this time with him.
Well I was in bed asleep by 8 last night but an hour later the nurses were doing their usual and were in and out every few minutes doing something or other so it was past midnight before I slept for a bit again. William slept reasonably through most of the cafuffle and beeping though. He has been a good, brave boy today. He ate a whole slice of toast this morning. Unfortunately his NG tube came out again, the plaster holding it in place had seen better days. He screamed and went v red when they put a new one in but he soon forgave the nurses. The play assistant finally pitched up to offer ‘helpful’ suggestions on ways to get William more comfortable with having his BP taken, sadly she had nothing new to offer but was at least impressed by Grandma’s latest acquisition of a toy BP cuff with pumping action! I escaped for a breath of fresh air and my routine trip to Waitrose leaving William in Grandma and Tractor Teds capable hands. It was also dressing changing day for his Hickman line so more torture for the poor wee man but we did it mid Jaffa cakes so at least there was a chocolatey reward at the end. A different Consultant breezed by this morning (a small team rotate every 6 weeks so hopefully we won’t be here to meet the next one) who seemed nice enough and not worried about W at this stage. W was less struck on him but is now wary of people he doesn’t recognise wearing plastic aprons. We were glad of Grandmas company today on what has been one of the more wearing days. Keller the 9 years old a couple of doors up was allowed out of his room for the first time post transplant today so that gives us all hope to see him walking up and down the corridor. I am very proud of Robert today who went to a primary school in Chippenham and did a talk for Jeans for Genes day in front of an audience of over 250 children. Did you know you share 50% of your genes with a banana?
Tuesday +5
A rather traumatic evening for W last night, his NG tube was somehow blocked and they had to put a new one in. Two in one day isn’t much fun at all, for anyone. Anyway we were finally resettled just past midnight so were only just waking up, mostly thanks to the fire alarm which someone’s toast sets off most mornings, when Daddy arrived laden with goodies once again. In the past few days we have changed A LOT of nappies not to put too finer point on it and his petit derriere is suffering. He has been having Dioralyte through his NG tube at a fairly slow rate all night and day plus the odd IV fluid top up. He is not losing weight at the moment which is good and they will probably put a milk feed up tomorrow and see how his tummy copes with that. He is encouraged to eat anything he likes and today has taken advantage of that with chocolate buttons and jelly tots a plenty and just a small bite of pear and spoonful of yoghurt. The last couple of days have felt long and tiring, the end seems a long way away and the frequent nurse visits, especially when he is just dropping off to sleep have become increasingly tiresome. I popped into the chapel today which is beautiful. Very ornate, apparently they moved the whole thing from a different building. I am reliably informed that it was featured on Blue Peter some years ago. William is about to be freed from his tubes for an hours run around before bath and bed and more tubes so I shall go and enjoy this time with him.
Monday, 1 October 2007
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