Got those Crocs...yeah!!!Monday, 5 November 2007
The weekend
Saturday +37 and Sunday +38 and Happy Birthday Rob!!!!
A stressful start to the weekend thanks to British Rail and their engineering works delaying Robert’s arrival and then Accommodation services telling him that they didn’t have space for him. I went over and burst into tears in their office (for various reasons, not just to get a room you understand) and anyway later that day they did find space for him, which was great. I washed and tumbled all cuddlies due a sicky incident in the night. William was sick again mid morning and rather dramatically at 6am this morning, luckily all but 3 of the cuddlies were saved (Smudge, Smoky and Elgar are on their way home with Rob for another bath)! I had a trip to Covent Garden to pick up some shoes for Rob and it was heaving, so I beat a hasty retreat. We had a pleasant evening with pizza (we are such creatures of habit (although I did have a different pizza, I will have you know)). We watched a bit of DVD and then William woke up. He had been a bit unsettled and I thought that he had tummy ache so we got him some codeine but by the time the nurse had done his BP, taking his temperature and checked his pulse his was wide awake and bouncing around his cot like he’d been drinking espressos! (is that the plural of espresso?!) Rob left and I turned the lights off in an effort to encourage sleep but he worked out that the best way to get my attention was to stand up and pull at the milk feed and bag of TPN hanging just beside his cot and then try and press the buttons on the machines. Finding himself hilarious and saying “no no no” when I told him off. I couldn’t push the machines out of reach because the lines aren’t long enough and pull. Anyway he finally went back to sleep at around midnight much to my relief. William’s mouth has been a bit less sore today and we have tempted him over the day with 4 wafer biscuits and most of a portion (one of those hotel breakfast sachet type affairs) of blackcurrant jam! (it was spread on a rice cake but is better licked off it and scooped out of the little plastic container with a finger! Not your traditional diet I agree but desperate times and all that. I am hoping to see the dietician tomorrow as she failed to materialise on Friday to get some more food ideas. Today I went back to Covent Garden to exchange Robs shoes (which were faulty). I went about 11 to get there and back before it was too busy, it was quite quiet actually but that’s because the bulk of the shops don’t open until 12, duh! This afternoon Rob purchased some gluten free jaffa cakes and I asked housekeeping to portion them up for us (we can’t offer W anything from an already open packet, so its sachets, individually wrapped food or packets that they have split up and repackaged for us (just to keep as many of those germs out as possible)) but there was a knock on the door and they were mouldy in the packet so I shall be storming back to Holland and Barrett with them tomorrow, crying (not the teary kind, the assertive (but not shouty) kind) “my son has no immune system, he doesn’t need your fungus!!!” (or words to that effect!). There is another mum on the ward with whom I haven’t yet had a conversation without her saying “my son has no immune system” so it’s becoming a bit of a catchphrase!!! William has developed a rash (different to the other one which was really something and nothing) which is a bit dotty and bumpy and looks a bit like acne in it’s early stages and it may well be a bit of Graft versus host. Nothing to panic about (yet) they say a little is good blah blah so we shall see what the doctors say in the morning. Rob isn’t back until Thursday this week which seems a long time but we have Grandma from tomorrow morning until then to keep us sane. I am sad that Rob must spend his birthday evening travelling away from us but at least he will have the lovely Gillie for company later. At least 3 of us were able to be together for most of today and he and I did have a particularly nice birthday almond croissant for breakfast!!
A stressful start to the weekend thanks to British Rail and their engineering works delaying Robert’s arrival and then Accommodation services telling him that they didn’t have space for him. I went over and burst into tears in their office (for various reasons, not just to get a room you understand) and anyway later that day they did find space for him, which was great. I washed and tumbled all cuddlies due a sicky incident in the night. William was sick again mid morning and rather dramatically at 6am this morning, luckily all but 3 of the cuddlies were saved (Smudge, Smoky and Elgar are on their way home with Rob for another bath)! I had a trip to Covent Garden to pick up some shoes for Rob and it was heaving, so I beat a hasty retreat. We had a pleasant evening with pizza (we are such creatures of habit (although I did have a different pizza, I will have you know)). We watched a bit of DVD and then William woke up. He had been a bit unsettled and I thought that he had tummy ache so we got him some codeine but by the time the nurse had done his BP, taking his temperature and checked his pulse his was wide awake and bouncing around his cot like he’d been drinking espressos! (is that the plural of espresso?!) Rob left and I turned the lights off in an effort to encourage sleep but he worked out that the best way to get my attention was to stand up and pull at the milk feed and bag of TPN hanging just beside his cot and then try and press the buttons on the machines. Finding himself hilarious and saying “no no no” when I told him off. I couldn’t push the machines out of reach because the lines aren’t long enough and pull. Anyway he finally went back to sleep at around midnight much to my relief. William’s mouth has been a bit less sore today and we have tempted him over the day with 4 wafer biscuits and most of a portion (one of those hotel breakfast sachet type affairs) of blackcurrant jam! (it was spread on a rice cake but is better licked off it and scooped out of the little plastic container with a finger! Not your traditional diet I agree but desperate times and all that. I am hoping to see the dietician tomorrow as she failed to materialise on Friday to get some more food ideas. Today I went back to Covent Garden to exchange Robs shoes (which were faulty). I went about 11 to get there and back before it was too busy, it was quite quiet actually but that’s because the bulk of the shops don’t open until 12, duh! This afternoon Rob purchased some gluten free jaffa cakes and I asked housekeeping to portion them up for us (we can’t offer W anything from an already open packet, so its sachets, individually wrapped food or packets that they have split up and repackaged for us (just to keep as many of those germs out as possible)) but there was a knock on the door and they were mouldy in the packet so I shall be storming back to Holland and Barrett with them tomorrow, crying (not the teary kind, the assertive (but not shouty) kind) “my son has no immune system, he doesn’t need your fungus!!!” (or words to that effect!). There is another mum on the ward with whom I haven’t yet had a conversation without her saying “my son has no immune system” so it’s becoming a bit of a catchphrase!!! William has developed a rash (different to the other one which was really something and nothing) which is a bit dotty and bumpy and looks a bit like acne in it’s early stages and it may well be a bit of Graft versus host. Nothing to panic about (yet) they say a little is good blah blah so we shall see what the doctors say in the morning. Rob isn’t back until Thursday this week which seems a long time but we have Grandma from tomorrow morning until then to keep us sane. I am sad that Rob must spend his birthday evening travelling away from us but at least he will have the lovely Gillie for company later. At least 3 of us were able to be together for most of today and he and I did have a particularly nice birthday almond croissant for breakfast!!
The Fox Report
Monday +39
The consultant saw W this morning and isn’t too concerned about the rash, still it is quite hard not to worry. Otherwise it looks like Bristol is really full so we will have to go straight home instead…hoorah! They are sorting out getting us a pump and training for the milk, so that we can do feeds through the NG tube at home. Rob and I are having our ‘going home’ talk on Thursday which takes an rather comprehensive 2 hours. It doesn’t mean that we are actually going just yet but at least we will be ready. I am hopeful for next week if we keep on as we are. We will also start doing William’s many medicines ourselves under the supervision of the nurses so that they are confident that we are up to speed with flushing the tube and measuring quantities etc. William was a jumping bean again last night and didn’t want to go to sleep but was obviously feeling a bit icky as he was sick 3 times in 2 hours. Not too much each time but lots of cuddles and clean sheets! He crashed out at about 11. They are going to change one of his medicines (Cyclosporin) from IV to oral this week which will be interesting. They can measure the levels in his blood to check that his is absorbing enough and that it isn’t coming straight out of one end or the other. William has a new book with Thomas the Tank Engine that has several buttons that make a noise, Grandma had him in hysterics last night by jumping up to salute each time he pressed the fanfare button. It was hilarious, it was great to see him having such fun. He has drunk some water today and eaten a couple of wafers and slice of wheat free honey cake! I am still trying to see the dietician for advice, I think that they are happy for them to eat just about anything at this stage, just as long as they eat, there are baskets of chocolate and all sorts of goodies lurking in the fridge for some of the other children. Took my mouldy jaffa cakes back to H&B and did get my money back but am not sure that the assistant really grasped the concern that I had about taking mould onto a reverse isolation ward! However he did assure me that he would check the rest of the stock.
I think that for once in my life (no, not the thinking bit, wait for it) that I have said nothing when I should have said something. I didn’t know what to say and wasn’t sure, anyway I want to say how sorry we were to hear of Roy’s death and would like to send love and condolences to Mary and everyone who loved Roy.
The consultant saw W this morning and isn’t too concerned about the rash, still it is quite hard not to worry. Otherwise it looks like Bristol is really full so we will have to go straight home instead…hoorah! They are sorting out getting us a pump and training for the milk, so that we can do feeds through the NG tube at home. Rob and I are having our ‘going home’ talk on Thursday which takes an rather comprehensive 2 hours. It doesn’t mean that we are actually going just yet but at least we will be ready. I am hopeful for next week if we keep on as we are. We will also start doing William’s many medicines ourselves under the supervision of the nurses so that they are confident that we are up to speed with flushing the tube and measuring quantities etc. William was a jumping bean again last night and didn’t want to go to sleep but was obviously feeling a bit icky as he was sick 3 times in 2 hours. Not too much each time but lots of cuddles and clean sheets! He crashed out at about 11. They are going to change one of his medicines (Cyclosporin) from IV to oral this week which will be interesting. They can measure the levels in his blood to check that his is absorbing enough and that it isn’t coming straight out of one end or the other. William has a new book with Thomas the Tank Engine that has several buttons that make a noise, Grandma had him in hysterics last night by jumping up to salute each time he pressed the fanfare button. It was hilarious, it was great to see him having such fun. He has drunk some water today and eaten a couple of wafers and slice of wheat free honey cake! I am still trying to see the dietician for advice, I think that they are happy for them to eat just about anything at this stage, just as long as they eat, there are baskets of chocolate and all sorts of goodies lurking in the fridge for some of the other children. Took my mouldy jaffa cakes back to H&B and did get my money back but am not sure that the assistant really grasped the concern that I had about taking mould onto a reverse isolation ward! However he did assure me that he would check the rest of the stock.
I think that for once in my life (no, not the thinking bit, wait for it) that I have said nothing when I should have said something. I didn’t know what to say and wasn’t sure, anyway I want to say how sorry we were to hear of Roy’s death and would like to send love and condolences to Mary and everyone who loved Roy.
Saturday, 3 November 2007
Congratulations
Congratulations to Richard and Fran on your engagement, I am really pleased for you both, Catherine x
Update
Wednesday +34 and Thursday +35 (5 weeks!)
Well its all go as usual here. William ate some carrot (and only threw a bit of it up again!) and I had a Square Pie lunch with Dad and Phyllis (which, apart from me knocking over and breaking (the fortunately, empty) wine glasses)) went very well. (ooh the bracket count is quite high already this evening). Jack has the same virus as William and that’s a bit of a concern as they have never been in contact with each other, but it is quite a common and the nursing staff are meticulous with their hand washing and apron wearing. There’s lots of talk this end of the ward about transferring to local hospitals (or hopefully going home) so that’s encouraging. William took his own nappy off this evening whilst he was in his cot, supposedly trying to get to sleep!!! Fortunately I spotted his bare buttocks before and leakages occurred. I was suitably straight faced as I explained that taking nappies off is not a fun new game! William ate a few teaspoons of chocolate soya pudding today but was also sick (quite a lot, but not the NG tube (phew!)). His milk is up to a massive 33 mls/hour which everyone is very pleased with. Certainly one vomit a day would not prevent us from leaving, neither will a few sizeable runny nappies apparently, but will mean that our washing machine has to earn it’s keep! I will miss the hospital and Granma Curtis laundry service very much!!!! William has a nasty dose of oral thrush which we spotted today and this may well be another reason why he is so off his food. He is on an antifungal medicine which should help and they may give him some other stuff too in due course (he is asleep now and the doctor has been otherwise tied up for the last 3 hours apparently and unable to inspect his wide awake mouth, well perhaps I should just be glad that they don’t want me to wake him up to have a look!!!!) I went on a trek to the nearest argos today and came back laden with storage boxes (Rob is planning our great escape and storage boxes play a key role in the packing and loading/unloading section of the plan) and digital bathroom scales (so that we can keep track of William’s weight when we get home) which were pretty cumbersome (ooh, like that word, must use it tomorrow) (the boxes, not the scales, obviously) to carry miles (a tiny exaggeration) around the streets of London with my beloved laptop on my back and I did get an odd look as I burst (literally) through the door of the internet café. Anyway this evening I was quizzing our poor nurse about the capacity of the tubing and working out how much the flush needed to be depending how long the tubing was, as it does seem to vary in both length and external and internal diameters for each thing and then I realised I really have been here to long and need a new hobby! Which reminds me. this morning our lovely night shift nurse, who is still having her IV training, had the (slightly scary, although not the scariest by a mile) senior nurse go through with her what she needed to do and then left her to it and the poor girl was mortified shortly afterwards when she realised she had taken the blood for his morning counts from the wrong line (they get odd readings if they use the one that has had a certain thing going through it) and hooked up the IV drugs to the other one incorrectly (although not started them, it wouldn’t have done anything bad, they just routinely us certain lines for certain things) (cos by default, if there are only two choices and you choose wrong once, you will choose wrongly again, assuming that the second time the first choice has been eliminated, leaving you effectively without a choice, confused? Me too but I have a feeling the more pedantic amongst you (and yes I do mean you, Nick might find (and still might) find a flaw in my reasoning (and if that’s not laying down the gauntlet I don’t know what is)). Anyway as I was saying before I was interrupted by one of my many alter egos (yes alright, Harriet (it’s a HPPC thing!)). The other nurse came back with fresh drugs, flushes and all that marlarky and it wasn’t a problem. I popped to the desk a bit later to hear her telling all the other nurses how awful she felt but really she handled a genuine mistake very well and I did reassure her that W didn’t mind giving her a tiny bit of blood for nothing.
Well I really must stop rambling now, no, Harriet you can’t have a turn, before they send for the men/women in white coats or wake up my son.
Friday +36
We waited most of the morning for the consultants round. They finally pitched up about 2. We can’t go to Bath, they couldn’t manage his level of care as it stands now but Bristol may be a possibility although they are not actively recruiting new patients, the consultant is going to call them himself and use his west country links to see if they can find us a room (we would need to be isolated because of the virus). It is a possibility for the week after next…but who knows by then Master Curtis may be feeling much more like eating and drinking?! He ate about 8cm of banana (he was only offered that much, portion sizes are necessarily small) today hoorah, but nothing else (actually he did eat about 20 rice crispies this morning but was immediately sick!) Williams blood counts are a bit on the low side again but with a bit of luck he will be busy making some more ready for tomorrows recount. I had a terrible nights sleep, just one of the nights and he had his Immunoglobulins which didn’t start until after midnight and necessitate extra coming and goings but he slept pretty well. He (and I!) had a late nap this afternoon and as a result he is bouncing around his cot (literally) shouting “uh oh” and “baa” at top volume trying to attract attention, oh it turned out that 2 of his cuddly sheep had jumped overboard and he wanted them retrieved, silly mummy for being so slow on the uptake! Not sure if I have mentioned it but William is getting pretty good at waving and even says bye now, it’s all the extra practice from all the comings and goings. Still trying to establish please and thank you with no success yet.
Well its all go as usual here. William ate some carrot (and only threw a bit of it up again!) and I had a Square Pie lunch with Dad and Phyllis (which, apart from me knocking over and breaking (the fortunately, empty) wine glasses)) went very well. (ooh the bracket count is quite high already this evening). Jack has the same virus as William and that’s a bit of a concern as they have never been in contact with each other, but it is quite a common and the nursing staff are meticulous with their hand washing and apron wearing. There’s lots of talk this end of the ward about transferring to local hospitals (or hopefully going home) so that’s encouraging. William took his own nappy off this evening whilst he was in his cot, supposedly trying to get to sleep!!! Fortunately I spotted his bare buttocks before and leakages occurred. I was suitably straight faced as I explained that taking nappies off is not a fun new game! William ate a few teaspoons of chocolate soya pudding today but was also sick (quite a lot, but not the NG tube (phew!)). His milk is up to a massive 33 mls/hour which everyone is very pleased with. Certainly one vomit a day would not prevent us from leaving, neither will a few sizeable runny nappies apparently, but will mean that our washing machine has to earn it’s keep! I will miss the hospital and Granma Curtis laundry service very much!!!! William has a nasty dose of oral thrush which we spotted today and this may well be another reason why he is so off his food. He is on an antifungal medicine which should help and they may give him some other stuff too in due course (he is asleep now and the doctor has been otherwise tied up for the last 3 hours apparently and unable to inspect his wide awake mouth, well perhaps I should just be glad that they don’t want me to wake him up to have a look!!!!) I went on a trek to the nearest argos today and came back laden with storage boxes (Rob is planning our great escape and storage boxes play a key role in the packing and loading/unloading section of the plan) and digital bathroom scales (so that we can keep track of William’s weight when we get home) which were pretty cumbersome (ooh, like that word, must use it tomorrow) (the boxes, not the scales, obviously) to carry miles (a tiny exaggeration) around the streets of London with my beloved laptop on my back and I did get an odd look as I burst (literally) through the door of the internet café. Anyway this evening I was quizzing our poor nurse about the capacity of the tubing and working out how much the flush needed to be depending how long the tubing was, as it does seem to vary in both length and external and internal diameters for each thing and then I realised I really have been here to long and need a new hobby! Which reminds me. this morning our lovely night shift nurse, who is still having her IV training, had the (slightly scary, although not the scariest by a mile) senior nurse go through with her what she needed to do and then left her to it and the poor girl was mortified shortly afterwards when she realised she had taken the blood for his morning counts from the wrong line (they get odd readings if they use the one that has had a certain thing going through it) and hooked up the IV drugs to the other one incorrectly (although not started them, it wouldn’t have done anything bad, they just routinely us certain lines for certain things) (cos by default, if there are only two choices and you choose wrong once, you will choose wrongly again, assuming that the second time the first choice has been eliminated, leaving you effectively without a choice, confused? Me too but I have a feeling the more pedantic amongst you (and yes I do mean you, Nick might find (and still might) find a flaw in my reasoning (and if that’s not laying down the gauntlet I don’t know what is)). Anyway as I was saying before I was interrupted by one of my many alter egos (yes alright, Harriet (it’s a HPPC thing!)). The other nurse came back with fresh drugs, flushes and all that marlarky and it wasn’t a problem. I popped to the desk a bit later to hear her telling all the other nurses how awful she felt but really she handled a genuine mistake very well and I did reassure her that W didn’t mind giving her a tiny bit of blood for nothing.
Well I really must stop rambling now, no, Harriet you can’t have a turn, before they send for the men/women in white coats or wake up my son.
Friday +36
We waited most of the morning for the consultants round. They finally pitched up about 2. We can’t go to Bath, they couldn’t manage his level of care as it stands now but Bristol may be a possibility although they are not actively recruiting new patients, the consultant is going to call them himself and use his west country links to see if they can find us a room (we would need to be isolated because of the virus). It is a possibility for the week after next…but who knows by then Master Curtis may be feeling much more like eating and drinking?! He ate about 8cm of banana (he was only offered that much, portion sizes are necessarily small) today hoorah, but nothing else (actually he did eat about 20 rice crispies this morning but was immediately sick!) Williams blood counts are a bit on the low side again but with a bit of luck he will be busy making some more ready for tomorrows recount. I had a terrible nights sleep, just one of the nights and he had his Immunoglobulins which didn’t start until after midnight and necessitate extra coming and goings but he slept pretty well. He (and I!) had a late nap this afternoon and as a result he is bouncing around his cot (literally) shouting “uh oh” and “baa” at top volume trying to attract attention, oh it turned out that 2 of his cuddly sheep had jumped overboard and he wanted them retrieved, silly mummy for being so slow on the uptake! Not sure if I have mentioned it but William is getting pretty good at waving and even says bye now, it’s all the extra practice from all the comings and goings. Still trying to establish please and thank you with no success yet.
Thursday, 1 November 2007
PS
Best wishes to Great Uncle George, I hope you are not too sore, I am sure Helene is taking good care of you. C, R and W xxx
News from fox....
Monday +32 and Tuesday +33 (and Happy Birthday, (Great!) Uncle Stuart!)
William was sick on Sunday and Monday evenings, boo. He has been nibbling on rice cakes but not much else. He refuses his chocolate milk now too. Today (Tuesday) he has refused his generously portions half slices of wheat free toast with Marmite too and has hardly drunk anything so they have just dumped (well, over an hour) 100mls of water down his NG tube so we will see if I get to see that again later, he is sleeping at the moment so who knows? Sadly, Jack didn’t get to go home today as he was sick a few times and they need to be sure that there is nothing sinister brewing before they let you out. William seems to be holding his neutrophils levels just less than 1 at the moment (they like them to be more than 1 (maybe they are sociable things!)). As of Monday, they are reducing one of his immune suppressant meds. This will release the T cells from his new donor immune system so hopefully they will start fighting the virus, boost his neutrophils and white cell levels and generally make themselves more at home! There is a POSSIBILITY that we will be transferred to a local hospital in a week or so. If we can get off the TPN (which would mean W was able to eat, drink and digest enough nutrients etc) we could even go home!!!!!!!! If we can’t get off the TPN that soon (and to be honest it doesn’t seem like a real prospect at the moment) then we may go to Bristol Children’s Hospital (they are a BMT transplant centre and we do know the Immunology Consultant and his team there, who does have previous experience of WAS transplant children). I am assured that they would work closely with GOS and it might save us outpatient trips to London, if we can go to Bristol instead. Lucy next door may do the same to her local hospital. I think they want to clear a few beds. There must be a lot of poorly children waiting for a space on the unit and if our needs are more post transplant and nutritional then it’s right that we move on. I will keep you posted, we did mention to one of the more senior nurses today, looking for some confirmation/clarification who said, and I quote ‘sometimes the doctors do get some funny ideas in their heads’. It is generally advisable to hear the same version from at least three sources before getting too excited about anything (even the availability of straws, which incidently there isn’t any availability of (again! (did any of that make sense))) The exciting news of the evening is that the buzzers are working!!! Buzz buzz…although having pressed mine over 10 minutes ago am now not quite so sure! It is a very busy time and the evening shift take over in 20 minutes or so. Earlier there was a rather scary moment on the corridor when Eldaras’ mum pressed the emergency buzzer and the doctors and nurses really did appear from nowhere within seconds (which was v impressive and quite reassuring). He is fine (well fine ish) he has a v high temperature, chest infection and had his marrow yesterday his monitor was showing quite low oxygen levels, hence the panic but the levels are back up now.Apart from all the medical stuff W remains very much ‘himself’. He had a lovely time with Grandma on Monday whilst I had a scrummy lunch with Bryher. He enjoyed watching University Challenge last night (it was, post being sick recuperation time for the two of us)! He had lots of fun with Daddy today whilst Mummy went on a shopping mission for birthday presents, treats for herself and a lovely fleece for W for Christmas, or as a going outside again present! Today he made an Excavator out of mega blocks and pointed at the one on the TV then to the one in his hand! Who knows what tomorrow holds.
William was sick on Sunday and Monday evenings, boo. He has been nibbling on rice cakes but not much else. He refuses his chocolate milk now too. Today (Tuesday) he has refused his generously portions half slices of wheat free toast with Marmite too and has hardly drunk anything so they have just dumped (well, over an hour) 100mls of water down his NG tube so we will see if I get to see that again later, he is sleeping at the moment so who knows? Sadly, Jack didn’t get to go home today as he was sick a few times and they need to be sure that there is nothing sinister brewing before they let you out. William seems to be holding his neutrophils levels just less than 1 at the moment (they like them to be more than 1 (maybe they are sociable things!)). As of Monday, they are reducing one of his immune suppressant meds. This will release the T cells from his new donor immune system so hopefully they will start fighting the virus, boost his neutrophils and white cell levels and generally make themselves more at home! There is a POSSIBILITY that we will be transferred to a local hospital in a week or so. If we can get off the TPN (which would mean W was able to eat, drink and digest enough nutrients etc) we could even go home!!!!!!!! If we can’t get off the TPN that soon (and to be honest it doesn’t seem like a real prospect at the moment) then we may go to Bristol Children’s Hospital (they are a BMT transplant centre and we do know the Immunology Consultant and his team there, who does have previous experience of WAS transplant children). I am assured that they would work closely with GOS and it might save us outpatient trips to London, if we can go to Bristol instead. Lucy next door may do the same to her local hospital. I think they want to clear a few beds. There must be a lot of poorly children waiting for a space on the unit and if our needs are more post transplant and nutritional then it’s right that we move on. I will keep you posted, we did mention to one of the more senior nurses today, looking for some confirmation/clarification who said, and I quote ‘sometimes the doctors do get some funny ideas in their heads’. It is generally advisable to hear the same version from at least three sources before getting too excited about anything (even the availability of straws, which incidently there isn’t any availability of (again! (did any of that make sense))) The exciting news of the evening is that the buzzers are working!!! Buzz buzz…although having pressed mine over 10 minutes ago am now not quite so sure! It is a very busy time and the evening shift take over in 20 minutes or so. Earlier there was a rather scary moment on the corridor when Eldaras’ mum pressed the emergency buzzer and the doctors and nurses really did appear from nowhere within seconds (which was v impressive and quite reassuring). He is fine (well fine ish) he has a v high temperature, chest infection and had his marrow yesterday his monitor was showing quite low oxygen levels, hence the panic but the levels are back up now.Apart from all the medical stuff W remains very much ‘himself’. He had a lovely time with Grandma on Monday whilst I had a scrummy lunch with Bryher. He enjoyed watching University Challenge last night (it was, post being sick recuperation time for the two of us)! He had lots of fun with Daddy today whilst Mummy went on a shopping mission for birthday presents, treats for herself and a lovely fleece for W for Christmas, or as a going outside again present! Today he made an Excavator out of mega blocks and pointed at the one on the TV then to the one in his hand! Who knows what tomorrow holds.
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