Thursday, 6 December 2007
On the Move
Pickfords have been ordered, as of sunday William will be on Robin Ward so that we can be closer to the team that are in charge of his care and so that someone else can have a BMT for Christmas. Happy St Nicholas Day to Lucy hope all is going well at home.
Monday, 3 December 2007
21 shopping days left top of list one way ticket West
Saturday +65 (1st December)
I met Tasha in Camden Town which was very busy indeed and we had a delicious late lunch and much fun and wine! Otherwise things are pretty much the same, a slightly quieter nappy day due to previous clear out but normal service has since resumed! William is still looking a bit puffy so they are keeping a close eye on his fluids.
Sunday +66
They are still a bit concerned about William’s fluid retention and thought about giving him a diuretic and some other stuff to stop the fluid going into the tissue rather than staying in the blood stream which is where it needs to be to relive his kidneys. His blood results are improved though so it’s really a case of just wait and see what happens. He has drunk A LOT of water today (600mls) without being sick (which is good) but unusual (so may be bad!?) I went down Oxford Street and bought a few essential extra items of clothing (actually one cardi wasn’t essential but is lovely and a girls got to cheer herself up somehow!) Rob went shopping for mince pies and came back with some the size of saucers…yumm! William got a bit overtired this evening (a short daytime nap and then too much going on with the nurses at sleep o’clock) and would not go to sleep and was naughty pulling at his lines and throwing cuddlies from the cot. Eventually he gave in about 9.30 which was a relief to everyone.
Monday +67
I have had a lovely surprise this morning and am off to lunch with Di so am just getting a spot of laundry done (we make rather a lot we still have to have all clean clothes every day) and writing this and a few Christmas cards (feeling a bit organised (don’t worry it won’t last!)) We are not sure what the timescale for leaving might be, will try and broach the subject with the consultant tomorrow in broad terms but think we will be, at best, cutting it pretty fine for Christmas. William as continued to drink for England today so we have asked about this and the doctors say they will keep an eye on it. Rounds where at three this afternoon so William was forgotten again today so we are interested to see how much of an eye they keep on it from the other ward. We have started an advent window each day a new decoration goes up by Christmas we will not be able to see into the ward. Photos of window will appear in a couple of days. William is getting quite good at opening his advent calendars lucky they are both traditional no chocolate. Hope everyones prep for Christmas is going well and remember not to get sucked into the comercialization of it all. And to finish with the words of Tiny Tim "God bless us, Everyone!".
I met Tasha in Camden Town which was very busy indeed and we had a delicious late lunch and much fun and wine! Otherwise things are pretty much the same, a slightly quieter nappy day due to previous clear out but normal service has since resumed! William is still looking a bit puffy so they are keeping a close eye on his fluids.
Sunday +66
They are still a bit concerned about William’s fluid retention and thought about giving him a diuretic and some other stuff to stop the fluid going into the tissue rather than staying in the blood stream which is where it needs to be to relive his kidneys. His blood results are improved though so it’s really a case of just wait and see what happens. He has drunk A LOT of water today (600mls) without being sick (which is good) but unusual (so may be bad!?) I went down Oxford Street and bought a few essential extra items of clothing (actually one cardi wasn’t essential but is lovely and a girls got to cheer herself up somehow!) Rob went shopping for mince pies and came back with some the size of saucers…yumm! William got a bit overtired this evening (a short daytime nap and then too much going on with the nurses at sleep o’clock) and would not go to sleep and was naughty pulling at his lines and throwing cuddlies from the cot. Eventually he gave in about 9.30 which was a relief to everyone.
Monday +67
I have had a lovely surprise this morning and am off to lunch with Di so am just getting a spot of laundry done (we make rather a lot we still have to have all clean clothes every day) and writing this and a few Christmas cards (feeling a bit organised (don’t worry it won’t last!)) We are not sure what the timescale for leaving might be, will try and broach the subject with the consultant tomorrow in broad terms but think we will be, at best, cutting it pretty fine for Christmas. William as continued to drink for England today so we have asked about this and the doctors say they will keep an eye on it. Rounds where at three this afternoon so William was forgotten again today so we are interested to see how much of an eye they keep on it from the other ward. We have started an advent window each day a new decoration goes up by Christmas we will not be able to see into the ward. Photos of window will appear in a couple of days. William is getting quite good at opening his advent calendars lucky they are both traditional no chocolate. Hope everyones prep for Christmas is going well and remember not to get sucked into the comercialization of it all. And to finish with the words of Tiny Tim "God bless us, Everyone!".
Saturday, 1 December 2007
Friday +64 and Saturday (am) +65
William had tummy ache last night and although he slept well it returned this morning. They gave him some meds which seemed to help but he was pretty uncomfy in the meanwhile. This morning he woke up with a blotchy rash too and the doctor came and said, yes it was a blotchy rash which might be due to any number of factors, so thanks for clarifying that! He had some Piriton and it faded in it’s own time. We and the nurse had a hectic time this morning trying to get his pre meds ready, change one of the TPN machines (it wouldn’t hold a charge) and get a doctor to put a canula in by 10.30! (we got the earlier slot). They needed a canula because they don’t like to use the Hickman lines for a ‘dirty’ procedure, the nurse slathered him in anaesthetic cream but of course the doctor found (on his third attempt) a vein on the only bit of him that was cream free! Anyway eventually we were sorted and the porter took us on a trip around the hospital, in two lifts up to the suite, William was already a bit drowsy by then so not too bothered by his ride on a bed with his IV pole following closely behind. We got there and they gave him some more meds and he went a bit woosy then laid down. Rob and I beat a hasty retreat when they started to put a tube down his throat. We went for a coffee and then waited outside. They reverse the sedation and he cried for a bit (which they usually do) so we went in and he fell asleep in my arms. He then slept for another 4 hours without moving but snoring quite loudly! He woke for a couple of hours and then went back to bed and slept all night (more or less). He doesn’t seem to have suffered any ill effects from the procedure. They couldn’t see any visible damage to his insides (which is good) but they have taken tissue for biopsy and the microbiology will tell them more. We should get the results towards the end of next week. They must have cleared out all his tubing because it is very quiet on the nappy front. He has retained quite a lot of fluid over the last 48 hours so has put on quite a lot of weight and looks a bit puffy but they are adjusting his fluids so I’m sure that it will resolve quite quickly.
Exciting developments from the window, they are taking the crane down opposite, using another crane. There are men in yellow balancing very high above the street!
Exciting developments from the window, they are taking the crane down opposite, using another crane. There are men in yellow balancing very high above the street!Also Happy Advent everyone!
Thursday, 29 November 2007
Thursday +63
Well a bit of paracetamol put pay to the tummy gripes and we both had a good night.
Today has been mostly spent waiting for things to happen and then, of course, they all happen within ½ hour of each other. We met one of the endoscopy/colonoscopy nurses who will be with William tomorrow who seemed very nice and explained the procedure. It looks like we will be in there about 10.30 and it takes about an hour to do both ends! We can see him immediately before and after and even during (although I don’t think we will) he will be heavily sedated and the medicine that they give makes you not remember so he won’t know whether we were there or not and I think it would be distressing to see (think that might be an understatement!). He has had to have a laxative (cos we really need more poo!) and we didn’t quite understand why because he is not eating or having any milk, so they rang to explain it to me (which I thought was excellent). Apparently they really need to be sure (extra sure) that he is empty so that they can see the walls of the pipes and get the best picture. They will also take tissue samples for biopsy because the microbiology will confirm which damage is GVH and which is the virus and any other exciting things that they find (they may find a sequin as we think he ate one earlier and I haven’t seen it again yet!) The laxative has not had TOO drastic an effect (yet!?), there can’t be anything in there extra to come out! Although he does keep opening his bowels as I am changing him with dramatic effect! The new (2nd consultant from immuno and we only joined them last week!?) consultant came by today and didn’t say much really, he did look in Williams ears (which are fine) because he is very unsteady on his feet, walks like a drunk (and I should know) and needs to hold onto something to bend down (both of which he demonstrated very well whilst the doctor was here. They will review his medicines and see if any of those might be causing dizziness or something. Williams kidney function test (the Urea) is a bit high again today although his Liver is much improved. If it’s not one thing it is another! They will keep him hydrated and stop one of the meds for a couple of days (Aciclovir) that is particularly hard for the kidneys to process and hope that things improve. The play assistant also came by today and much fun was had with aforementioned sequins and glue. I finally got out for a breath of fresh air after 4pm. The last couple of hours have been hectic (we let Mum off early for good behaviour because Rob is coming tomorrow morning because of the procedure) so she went to catch her train having helped clear up the pre bath nappy explosion situation (nice!) then we had bath, mouth care, exciting new tractor stories, obs, tpn fitting, the bin lady and now sleep, phew. He will be having a drop of blood later as his haemoglobin is a bit low so they need to crack on and get the other IV meds in first so that it doesn’t take all night!
Today has been mostly spent waiting for things to happen and then, of course, they all happen within ½ hour of each other. We met one of the endoscopy/colonoscopy nurses who will be with William tomorrow who seemed very nice and explained the procedure. It looks like we will be in there about 10.30 and it takes about an hour to do both ends! We can see him immediately before and after and even during (although I don’t think we will) he will be heavily sedated and the medicine that they give makes you not remember so he won’t know whether we were there or not and I think it would be distressing to see (think that might be an understatement!). He has had to have a laxative (cos we really need more poo!) and we didn’t quite understand why because he is not eating or having any milk, so they rang to explain it to me (which I thought was excellent). Apparently they really need to be sure (extra sure) that he is empty so that they can see the walls of the pipes and get the best picture. They will also take tissue samples for biopsy because the microbiology will confirm which damage is GVH and which is the virus and any other exciting things that they find (they may find a sequin as we think he ate one earlier and I haven’t seen it again yet!) The laxative has not had TOO drastic an effect (yet!?), there can’t be anything in there extra to come out! Although he does keep opening his bowels as I am changing him with dramatic effect! The new (2nd consultant from immuno and we only joined them last week!?) consultant came by today and didn’t say much really, he did look in Williams ears (which are fine) because he is very unsteady on his feet, walks like a drunk (and I should know) and needs to hold onto something to bend down (both of which he demonstrated very well whilst the doctor was here. They will review his medicines and see if any of those might be causing dizziness or something. Williams kidney function test (the Urea) is a bit high again today although his Liver is much improved. If it’s not one thing it is another! They will keep him hydrated and stop one of the meds for a couple of days (Aciclovir) that is particularly hard for the kidneys to process and hope that things improve. The play assistant also came by today and much fun was had with aforementioned sequins and glue. I finally got out for a breath of fresh air after 4pm. The last couple of hours have been hectic (we let Mum off early for good behaviour because Rob is coming tomorrow morning because of the procedure) so she went to catch her train having helped clear up the pre bath nappy explosion situation (nice!) then we had bath, mouth care, exciting new tractor stories, obs, tpn fitting, the bin lady and now sleep, phew. He will be having a drop of blood later as his haemoglobin is a bit low so they need to crack on and get the other IV meds in first so that it doesn’t take all night!
Wednesday, 28 November 2007
Wednesday +62
No sign of a removal van yet so we are staying put on this ward for the moment. A quiet night on the nappy front but catch up explosions whilst changing him this morning meant that Grandma arrived to find me standing in a puddle of poo, now that’s a great start to any day!!!! They have had a cancellation to the endoscopy and colonscopy will now be on Friday late morning. The specialist nurse is coming by tomorrow to explain the nitty gritty and discuss and preparations that we need to make so we will know more then. I had a lovely lunch with Phyllis in Covent Garden (courtesy of Helene and George, so thanks!!) and we did a spot of shopping in the market which was fun. The music lady visited William briefly today with her keyboard and drums, unfortunately I missed it but I have seen the pictures and he was having a blast! I hope that she can come again but only does one day a week and covers 4 wards, it’s such a shame there are not more ‘music people’ it gives the children such a boost and must be so therapeutic. William has had bizarrely red feet at about 5.30 for the past 2 evenings, we can’t seem to figure out why, but red feet and palms are a sign of GVH so it may be that. Tonight the Doctor managed to get here before they faded again (they are red for about an hour) and said that yes there was no denying that they were red feet!! He is joined up to an astonishing 5 machines this evening, so much fluid I don’t know where it all goes (that’s not strictly true, we see a lot of it again in nappies!). I must go because he has a bit of tummy ache and needs soothing.
Happy Birthday Lisa!!!!
Tuesday, 27 November 2007
Tuesday +61
Grandma rejoined us today. The Consultants did their rounds this afternoon and are booking an endoscopy and colonoscopy for William for next week. This will help them see the damage to his insides and work out how to proceed. Until then we continue pretty much as we are. They will cancel it if he makes significant improvements in the meanwhile. His liver function tests are improving with the steroids so that’s good. He has been struggling to communicate what he wants today, partly because he couldn’t really work out what he wanted. He has thrown a few short but very dramatic tantrums which is most out of character for him, I am hoping that it is not due to the mood swings that the steroids bring (already?) and just down to a bit of overtiredness. His blood gasses have been better too with the oral Sodium bicarbonate but now his urea is a bit up which is a sign of dehydration so he will be having extra, extra fluids tonight! His nappies overnight are much improved but not during the day. I think we could consider that to be progress, of sorts. I gave our letter regarding the new restrictions on Fox to Camilla today who read it and said that I raised some good points and that they were having meetings and then some more meetings so they would bear it in mind. There is to be another parents meeting later this week. Jack is moving to Robin, the ward next door (despite the virus?!?!?) and I wouldn’t be at all surprised if we follow shortly. It wouldn’t be too bad, a seasonal change of scenery and you can eat in the rooms on Robin!!!!!! It is the Immunology and infectious diseases (!) ward where our new team of doctors are based anyway and is only a double set of doors away although I don’t relish getting to know a whole new team of nurses, although W might like a few new faces. The parent’s room and kitchen are shared between the wards anyway and there is generally a higher turnover of patients.
Monday, 26 November 2007
Monday +60
What an exciting day with the surprise arrival of Hannah, Nicky and Andy to the big smoke (teacher training day, not skiving!). We went for Pizza then took the tube to Buckingham Palace so that Hannah could see where the Queen lives (!). We walked over to Harrods and paid a fortune for cakes, tea and milkshakes. Andy saw Fulham’s manager (sorry Andy I forgot his name almost immediately such is my knowledge of Football) and Big Brother winner Brian and we bought Christmas baubles and toys. Hannah was an absolute delight and I enjoyed myself so much.
William has started on oral sodium bicarbonate as his blood gas levels remain a bit wonky. He is losing too much fluid to keep his own balance. He is getting ½ replacement fluids (replacing the volume lost in his nappies) to top him up too (an increase from ¼). Unfortunately it will just take time for his body to be ready to try ‘food’ again. He is drinking up to 200mls water a day so that’s a start. The steroids are having some effect at reducing the high score that his liver function/dysfunction results show but that too will take a bit of time. Otherwise his blood counts are all fine. Rob has gone now and I am tired after such a fun day, so will say goodnight.
William has started on oral sodium bicarbonate as his blood gas levels remain a bit wonky. He is losing too much fluid to keep his own balance. He is getting ½ replacement fluids (replacing the volume lost in his nappies) to top him up too (an increase from ¼). Unfortunately it will just take time for his body to be ready to try ‘food’ again. He is drinking up to 200mls water a day so that’s a start. The steroids are having some effect at reducing the high score that his liver function/dysfunction results show but that too will take a bit of time. Otherwise his blood counts are all fine. Rob has gone now and I am tired after such a fun day, so will say goodnight.
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