Sunday +24
No, it is the drip of information. It takes along time to find things out in hospital and you need to hear it at least from three different people to know it’s true. Interesting facts this week William will be going home in a week or two, this was quashed by a Doctor on Saturday who said it looks more like three weeks at the earliest as we are so far from GOSH. We got very excited about being allowed out on day 28 because all BMT children are allowed out then, false. It turns out that there are conditions which were not aired at first like that blood counts have to be a little higher than William's and that it’s a bad time of year because all the viruses and bugs are just waking up for the winter. So we will just bide our time and get there in the end.
Today’s magic numbers
WCC 0.68
Neutrophils 0.28
Lymphocytes 0.02
Not such great news with the blood counts today but they have given him a half dose of GCSF (as the last dose was stupendously effective) so that will give them a boost again. It is not unusual for the counts to rise and fall in this way and it might be that the community team monitor his blood counts and that we have GCSF locally when we are discharged. His body can make the cells when given a nudge in the right direction (the GCSF) so he will make them spontaneously in due course. His platelet levels are riding high at over 350.
The other Hickman line developed a hole this morning (I think it maybe mice) so the super nurse fixing team where called. I just got off the phone with Cath at 11.30pm and they have finally arrived and had a look at the line and will be back in the morning. Turns out the Super IV nurse team have just moved office and they don’t know were it is, so have no fixing materials or map. They return in the morning hopefully after locating their office and super glue. This means William has gone to bed with two large sets of plastic clamps on his line, comfort first!
William has drunk 150ml of Choc rice milk today but as soon as it’s in, it’s on it’s way out the nappies are no better (well maybe a bit!). His nappy failed at 2.30am this morning and in the half well maybe quarter light the fact that he had soiled over his line was missed. So this morning with autumn sunlight coming through the window along with the holes we discovered the dirt and samples have be sent for cultures.
We managed to watch three different DVDs other than Tractor Ted and had the radio on as well so hopefully Cath will fall asleep tonight without the theme tune bouncing around her head. Cath manage a trip to the shops to find out they don’t open til 12 in London on a Sunday so took back the jumper she brought yesterday and return with nothing, she is a rubbish shopper when it comes to things for herself.
Undercover exnurse Sue may of blown her cover last week by using blood pressure machine one handed, the nurses are still talking about it remember the red fox flies at midnight.
Well it’s bedtime and as I have a lovely day at work to look forward to in the morning I will sign off to sleep, so good night (morning) from the kitchen.
Monday, 22 October 2007
Sunday, 21 October 2007
Saintly hickman line well holely
Thursday +21
We have had a (reasonably) good nappy day and W has drunk a total of 150mls of chocolate flavoured rice milk! The dieticians will not be increasing his NG milk feed from 5mls/hour until his tummy is more settled still but hopefully at the beginning of next week. Unfortunately the nurse discovered 2 tiny holes (possible bite marks, although I’m not entirely sure that it reaches his mouth, I will have to surreptitiously check as I don’t want to give him any ideas!) in his Hickman line tube this afternoon. After a momentary panic (thinking he would need it replaced, involving another operation) they revealed that they can fix them, phew! A specialist nurse with lots of sterile stuff, snipped the end of and glued another end on and covered it with a cover (what else would you cover it with?) and it now has a splint (the middle of a syringe) bandaged to it for 48 hours until it gets better! We did have to hold William down for several minutes which was a bit traumatic for him but he was very brave and soon got over it. They have had to wait 4 hours before they can use it so some of his meds have been delayed and they are about to attach them now so fingers crossed that it still works!!!!!!! (it does!!)
He has otherwise been a happy chap today and has been playing contentedly with his new toys and even watched a whole 4 episodes of Postman Pat (his first postal encounter) without screaming ‘tract’ (which means please put Tractor Ted on NOW Mummy or I will keep shouting ‘tract’ and cry until you do or until I get bored and play with something else and then try again in a few minutes (or try Grandma now she has learned how to work the DVD player!)) Am happy to have included considerably more brackets than I have been using of late (did you miss them?)!
Friday +22
The consultant popped by this morning for chats about W whom he is still pleased with, progress wise. W was very well and happy today. A play assistant even stopped by for a while (for only the second time during our stay, which has been very disappointing) and W played quite happily with her for a short while, at one point I wasn’t even in the room. Hopefully they are coming back on Monday for more fun play. Unfortunately he woke up around 7.30 this evening and was promptly sick so we watched some TV together for a while which made I nice change, I couldn’t face yet another evening spent in the half light, trying to be calming to get him to go to sleep, so after some more meds and obs he went to sleep again past 10.30 but slept well until 5. I do wonder how on earth we will settle back into a routine at home but I am sure that we will, given a bit of time (after all it only took me a year to get him to sleep all evening!!!!! (Ahh!!!!!))
Saturday +23
It’s Daddy day and the Bloomsbury Festival so there is music and people on stilts which, was pleasant enough to walk around but would have been much more fun in the company of Rob and William. I walked over to Covent Garden this afternoon for a mooch around the shops. A pleasant evening meal with ‘ribena’ (well, illicit wine actually) although W is awake again now but happy. Rob is staying just down the road this week. W’s white cells are back down and his neutophils too so I think we might be in for another boosting dose of GCSF if his counts don’t pick up tomorrow. Our doctor for today went to school in Trowbridge and her parents live in Melksham! And on a Wiltshire note congratulations to St Paul’s Primary School in Chippenham who raised over £250 for Jeans for Genes Day following Rob’s talk (spectacularly because of, or despite of, he is not quite sure!!) The school contact for Jeans for Genes, son also shares our Lifetime nurse, it’s a small genetically challenged world!!!! I was pleased to read that they have found another donor for Luke Hartley and that they will be back in GOS before long (http://www.teamhartley.co.uk/) and wish the family a successful journey through their 5th transplant and can only imagine how hard that will be. Rob was v excited to meet Otto last night and see David and Nicky in their new home (which looks v organised as they have only been there a fortnight and Otto is a week old, they really are superparents!), I was v sad not to be able to go too. Well we must check the rugby score so bfn.
We have had a (reasonably) good nappy day and W has drunk a total of 150mls of chocolate flavoured rice milk! The dieticians will not be increasing his NG milk feed from 5mls/hour until his tummy is more settled still but hopefully at the beginning of next week. Unfortunately the nurse discovered 2 tiny holes (possible bite marks, although I’m not entirely sure that it reaches his mouth, I will have to surreptitiously check as I don’t want to give him any ideas!) in his Hickman line tube this afternoon. After a momentary panic (thinking he would need it replaced, involving another operation) they revealed that they can fix them, phew! A specialist nurse with lots of sterile stuff, snipped the end of and glued another end on and covered it with a cover (what else would you cover it with?) and it now has a splint (the middle of a syringe) bandaged to it for 48 hours until it gets better! We did have to hold William down for several minutes which was a bit traumatic for him but he was very brave and soon got over it. They have had to wait 4 hours before they can use it so some of his meds have been delayed and they are about to attach them now so fingers crossed that it still works!!!!!!! (it does!!)
He has otherwise been a happy chap today and has been playing contentedly with his new toys and even watched a whole 4 episodes of Postman Pat (his first postal encounter) without screaming ‘tract’ (which means please put Tractor Ted on NOW Mummy or I will keep shouting ‘tract’ and cry until you do or until I get bored and play with something else and then try again in a few minutes (or try Grandma now she has learned how to work the DVD player!)) Am happy to have included considerably more brackets than I have been using of late (did you miss them?)!
Friday +22
The consultant popped by this morning for chats about W whom he is still pleased with, progress wise. W was very well and happy today. A play assistant even stopped by for a while (for only the second time during our stay, which has been very disappointing) and W played quite happily with her for a short while, at one point I wasn’t even in the room. Hopefully they are coming back on Monday for more fun play. Unfortunately he woke up around 7.30 this evening and was promptly sick so we watched some TV together for a while which made I nice change, I couldn’t face yet another evening spent in the half light, trying to be calming to get him to go to sleep, so after some more meds and obs he went to sleep again past 10.30 but slept well until 5. I do wonder how on earth we will settle back into a routine at home but I am sure that we will, given a bit of time (after all it only took me a year to get him to sleep all evening!!!!! (Ahh!!!!!))
Saturday +23
It’s Daddy day and the Bloomsbury Festival so there is music and people on stilts which, was pleasant enough to walk around but would have been much more fun in the company of Rob and William. I walked over to Covent Garden this afternoon for a mooch around the shops. A pleasant evening meal with ‘ribena’ (well, illicit wine actually) although W is awake again now but happy. Rob is staying just down the road this week. W’s white cells are back down and his neutophils too so I think we might be in for another boosting dose of GCSF if his counts don’t pick up tomorrow. Our doctor for today went to school in Trowbridge and her parents live in Melksham! And on a Wiltshire note congratulations to St Paul’s Primary School in Chippenham who raised over £250 for Jeans for Genes Day following Rob’s talk (spectacularly because of, or despite of, he is not quite sure!!) The school contact for Jeans for Genes, son also shares our Lifetime nurse, it’s a small genetically challenged world!!!! I was pleased to read that they have found another donor for Luke Hartley and that they will be back in GOS before long (http://www.teamhartley.co.uk/) and wish the family a successful journey through their 5th transplant and can only imagine how hard that will be. Rob was v excited to meet Otto last night and see David and Nicky in their new home (which looks v organised as they have only been there a fortnight and Otto is a week old, they really are superparents!), I was v sad not to be able to go too. Well we must check the rugby score so bfn.
Thursday, 18 October 2007
This is what we can see from our room....
Also there is a floor in the patient hotel, donated by those generous folk of Jersey. The walls are decorated with the loveliest pictures of the island, cows, castles and lighthouses drawn by children of Jersey. The most loveliest is of a child drawing in the sand and the message reads Get Well Soon. I will take a picture before we leave.
News from the chilly big smoke.
Tuesday +19
Last night the TPN wouldn’t stop beeping ‘air in line’ so in the end they turned it off. Daddy arrived bright and early with coffee and gifts. I ventured out to Oxford Street and the delights of John Lewis and got William a great new piano keyboard type toy with animal noises, exactly the kind of thing I thoroughly disapprove of!! His counts have fallen considerably the neutrophils are now only 0.75 and his white cells less than 3 so after some more ‘discussion’ they did finally give him the GCSF. William had a wakeful evening and a couple of new sets of sheets (sick and leaky nappies, if that’s not too much detail!). He finally went to sleep again just before midnight, the nurses telling me that he didn’t need anything else medicine/most likely to disturb him type procedures (except the usual ‘observations’ and the routine checking of pumps) until 5am so hopeful of a few hours consecutive sleep I put my head down but they were back at 2am with some extensive rustling and IV fluids to make up for the nappies so we dream (well, day dream) of uninterrupted nights! Granma, Pappa, Auntie Nick, Hannah, Ella, Mary and Gillie all feature on a fabulous ‘movie’ that Rob brought up. William’s face lit up at the sight and sound of his favourite cousins, beloved dog and seeing Granma and Pappa (A. Nicky was the camera operator). Gillie has a fabulous (VERY short) new haircut that makes him less of a mud magnet and much more post transplant friendly (Thank you, Harriet!).
Wednesday +20
Met up with Phyllis and Dad today for a lovely lunch including wine, chocolate meringues and great conversation. Phyllis was laden with bags from Hamleys full of presents for me and William from her and Helene and George so thank you all very much. My boy is going to be thoroughly spoiled by the time he leaves here and those terrible twos are going to be quite a challenge!!! William drank his ‘Rice Dream’ with Nesquik chocolate flavour (sorry Tash it’s Nestle I know but what’s a girl to do?) so that’s encouraging. He would have drunk more (and was quite cross when no more appeared) but I didn’t want him to overdo it. Today his counts have shot up and we now have excessive numbers of all sorts of things. Even the nurses were a bit incredulous when they read neutrophils of 16 (from 0.75 overnight) and White Cells of 17.06! His platelets (which are unaffected by the GCSF) are holding good and high (409 today). We will see where they level out at this time, so fingers crossed we have still got a way to go yet. There is another (almost) 20 month old on the block now, Isaac so another playmate for William once he is allowed out and about (well, to the playroom that is 3 metres away, at least!) We had an interesting chat with his Dad about genetic disorders. They had been home from GOS for a month following BMT but have been in hospital locally for a couple of weeks and are now back here struggling with GVHD. Nana, a little girl along the corridor is being rushed to theatre this evening, I am not sure what is wrong but she is only about 7 (at a rough guess, I’ve only seen her lying in her bed through partly drawn curtains, she’s only been back a couple of weeks from intensive care) and the nurses said that her Mum will probably not get back here before she goes in, so please pray for her.
Nana is back from theatre in her room and her Mum is with her today so everything seems to be ok for now, fingers crossed (thurs am).
Last night the TPN wouldn’t stop beeping ‘air in line’ so in the end they turned it off. Daddy arrived bright and early with coffee and gifts. I ventured out to Oxford Street and the delights of John Lewis and got William a great new piano keyboard type toy with animal noises, exactly the kind of thing I thoroughly disapprove of!! His counts have fallen considerably the neutrophils are now only 0.75 and his white cells less than 3 so after some more ‘discussion’ they did finally give him the GCSF. William had a wakeful evening and a couple of new sets of sheets (sick and leaky nappies, if that’s not too much detail!). He finally went to sleep again just before midnight, the nurses telling me that he didn’t need anything else medicine/most likely to disturb him type procedures (except the usual ‘observations’ and the routine checking of pumps) until 5am so hopeful of a few hours consecutive sleep I put my head down but they were back at 2am with some extensive rustling and IV fluids to make up for the nappies so we dream (well, day dream) of uninterrupted nights! Granma, Pappa, Auntie Nick, Hannah, Ella, Mary and Gillie all feature on a fabulous ‘movie’ that Rob brought up. William’s face lit up at the sight and sound of his favourite cousins, beloved dog and seeing Granma and Pappa (A. Nicky was the camera operator). Gillie has a fabulous (VERY short) new haircut that makes him less of a mud magnet and much more post transplant friendly (Thank you, Harriet!).
Wednesday +20
Met up with Phyllis and Dad today for a lovely lunch including wine, chocolate meringues and great conversation. Phyllis was laden with bags from Hamleys full of presents for me and William from her and Helene and George so thank you all very much. My boy is going to be thoroughly spoiled by the time he leaves here and those terrible twos are going to be quite a challenge!!! William drank his ‘Rice Dream’ with Nesquik chocolate flavour (sorry Tash it’s Nestle I know but what’s a girl to do?) so that’s encouraging. He would have drunk more (and was quite cross when no more appeared) but I didn’t want him to overdo it. Today his counts have shot up and we now have excessive numbers of all sorts of things. Even the nurses were a bit incredulous when they read neutrophils of 16 (from 0.75 overnight) and White Cells of 17.06! His platelets (which are unaffected by the GCSF) are holding good and high (409 today). We will see where they level out at this time, so fingers crossed we have still got a way to go yet. There is another (almost) 20 month old on the block now, Isaac so another playmate for William once he is allowed out and about (well, to the playroom that is 3 metres away, at least!) We had an interesting chat with his Dad about genetic disorders. They had been home from GOS for a month following BMT but have been in hospital locally for a couple of weeks and are now back here struggling with GVHD. Nana, a little girl along the corridor is being rushed to theatre this evening, I am not sure what is wrong but she is only about 7 (at a rough guess, I’ve only seen her lying in her bed through partly drawn curtains, she’s only been back a couple of weeks from intensive care) and the nurses said that her Mum will probably not get back here before she goes in, so please pray for her.
Nana is back from theatre in her room and her Mum is with her today so everything seems to be ok for now, fingers crossed (thurs am).
Tuesday, 16 October 2007
Comments
Thanks for all your support and encouragement folks, it is SO much appreciated. Thanks for the offer Caroline but I'm not sure if we want William to grow roots here! TPN is Total Parental (think that this word is right, but not in the sense of parents as I previously imagined! it's as opposed to Enteral which is into the tummy) Nutrition and is the intra veneous 'food' that he is having. Alex, hope you are good with NG tubes as we seem to be getting through a few!
Lots of love everyone
Catherine x
Lots of love everyone
Catherine x
Subscribe to:
Posts (Atom)
