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.
Sunday, 28 October 2007
The wrong Toast
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.
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.
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!)
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