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.
Thursday, 18 October 2007
This is what we can see from our room....
Also there is a floor in the patient hotel, donated by those generous folk of Jersey. The walls are decorated with the loveliest pictures of the island, cows, castles and lighthouses drawn by children of Jersey. The most loveliest is of a child drawing in the sand and the message reads Get Well Soon. I will take a picture before we leave.
News from the chilly big smoke.
Tuesday +19
Last night the TPN wouldn’t stop beeping ‘air in line’ so in the end they turned it off. Daddy arrived bright and early with coffee and gifts. I ventured out to Oxford Street and the delights of John Lewis and got William a great new piano keyboard type toy with animal noises, exactly the kind of thing I thoroughly disapprove of!! His counts have fallen considerably the neutrophils are now only 0.75 and his white cells less than 3 so after some more ‘discussion’ they did finally give him the GCSF. William had a wakeful evening and a couple of new sets of sheets (sick and leaky nappies, if that’s not too much detail!). He finally went to sleep again just before midnight, the nurses telling me that he didn’t need anything else medicine/most likely to disturb him type procedures (except the usual ‘observations’ and the routine checking of pumps) until 5am so hopeful of a few hours consecutive sleep I put my head down but they were back at 2am with some extensive rustling and IV fluids to make up for the nappies so we dream (well, day dream) of uninterrupted nights! Granma, Pappa, Auntie Nick, Hannah, Ella, Mary and Gillie all feature on a fabulous ‘movie’ that Rob brought up. William’s face lit up at the sight and sound of his favourite cousins, beloved dog and seeing Granma and Pappa (A. Nicky was the camera operator). Gillie has a fabulous (VERY short) new haircut that makes him less of a mud magnet and much more post transplant friendly (Thank you, Harriet!).
Wednesday +20
Met up with Phyllis and Dad today for a lovely lunch including wine, chocolate meringues and great conversation. Phyllis was laden with bags from Hamleys full of presents for me and William from her and Helene and George so thank you all very much. My boy is going to be thoroughly spoiled by the time he leaves here and those terrible twos are going to be quite a challenge!!! William drank his ‘Rice Dream’ with Nesquik chocolate flavour (sorry Tash it’s Nestle I know but what’s a girl to do?) so that’s encouraging. He would have drunk more (and was quite cross when no more appeared) but I didn’t want him to overdo it. Today his counts have shot up and we now have excessive numbers of all sorts of things. Even the nurses were a bit incredulous when they read neutrophils of 16 (from 0.75 overnight) and White Cells of 17.06! His platelets (which are unaffected by the GCSF) are holding good and high (409 today). We will see where they level out at this time, so fingers crossed we have still got a way to go yet. There is another (almost) 20 month old on the block now, Isaac so another playmate for William once he is allowed out and about (well, to the playroom that is 3 metres away, at least!) We had an interesting chat with his Dad about genetic disorders. They had been home from GOS for a month following BMT but have been in hospital locally for a couple of weeks and are now back here struggling with GVHD. Nana, a little girl along the corridor is being rushed to theatre this evening, I am not sure what is wrong but she is only about 7 (at a rough guess, I’ve only seen her lying in her bed through partly drawn curtains, she’s only been back a couple of weeks from intensive care) and the nurses said that her Mum will probably not get back here before she goes in, so please pray for her.
Nana is back from theatre in her room and her Mum is with her today so everything seems to be ok for now, fingers crossed (thurs am).
Last night the TPN wouldn’t stop beeping ‘air in line’ so in the end they turned it off. Daddy arrived bright and early with coffee and gifts. I ventured out to Oxford Street and the delights of John Lewis and got William a great new piano keyboard type toy with animal noises, exactly the kind of thing I thoroughly disapprove of!! His counts have fallen considerably the neutrophils are now only 0.75 and his white cells less than 3 so after some more ‘discussion’ they did finally give him the GCSF. William had a wakeful evening and a couple of new sets of sheets (sick and leaky nappies, if that’s not too much detail!). He finally went to sleep again just before midnight, the nurses telling me that he didn’t need anything else medicine/most likely to disturb him type procedures (except the usual ‘observations’ and the routine checking of pumps) until 5am so hopeful of a few hours consecutive sleep I put my head down but they were back at 2am with some extensive rustling and IV fluids to make up for the nappies so we dream (well, day dream) of uninterrupted nights! Granma, Pappa, Auntie Nick, Hannah, Ella, Mary and Gillie all feature on a fabulous ‘movie’ that Rob brought up. William’s face lit up at the sight and sound of his favourite cousins, beloved dog and seeing Granma and Pappa (A. Nicky was the camera operator). Gillie has a fabulous (VERY short) new haircut that makes him less of a mud magnet and much more post transplant friendly (Thank you, Harriet!).
Wednesday +20
Met up with Phyllis and Dad today for a lovely lunch including wine, chocolate meringues and great conversation. Phyllis was laden with bags from Hamleys full of presents for me and William from her and Helene and George so thank you all very much. My boy is going to be thoroughly spoiled by the time he leaves here and those terrible twos are going to be quite a challenge!!! William drank his ‘Rice Dream’ with Nesquik chocolate flavour (sorry Tash it’s Nestle I know but what’s a girl to do?) so that’s encouraging. He would have drunk more (and was quite cross when no more appeared) but I didn’t want him to overdo it. Today his counts have shot up and we now have excessive numbers of all sorts of things. Even the nurses were a bit incredulous when they read neutrophils of 16 (from 0.75 overnight) and White Cells of 17.06! His platelets (which are unaffected by the GCSF) are holding good and high (409 today). We will see where they level out at this time, so fingers crossed we have still got a way to go yet. There is another (almost) 20 month old on the block now, Isaac so another playmate for William once he is allowed out and about (well, to the playroom that is 3 metres away, at least!) We had an interesting chat with his Dad about genetic disorders. They had been home from GOS for a month following BMT but have been in hospital locally for a couple of weeks and are now back here struggling with GVHD. Nana, a little girl along the corridor is being rushed to theatre this evening, I am not sure what is wrong but she is only about 7 (at a rough guess, I’ve only seen her lying in her bed through partly drawn curtains, she’s only been back a couple of weeks from intensive care) and the nurses said that her Mum will probably not get back here before she goes in, so please pray for her.
Nana is back from theatre in her room and her Mum is with her today so everything seems to be ok for now, fingers crossed (thurs am).
Tuesday, 16 October 2007
Comments
Thanks for all your support and encouragement folks, it is SO much appreciated. Thanks for the offer Caroline but I'm not sure if we want William to grow roots here! TPN is Total Parental (think that this word is right, but not in the sense of parents as I previously imagined! it's as opposed to Enteral which is into the tummy) Nutrition and is the intra veneous 'food' that he is having. Alex, hope you are good with NG tubes as we seem to be getting through a few!
Lots of love everyone
Catherine x
Lots of love everyone
Catherine x
More from the Fox!
Friday +15 and a bit more of Thursday.
Thursday afternoon, William asked for something to eat by trying to clamber into his highchair and pointing frantically at his bib. I gave him some rice milk, as recommended, which he drank 50 mls of. The latter part of the evening proved a bit too exciting with W accidentally catching his NG tube and pulling it out. The second nurse to try got it back in but on the first two attempts W got himself in a right stew and did a rather scary retching/breathe holding trick which has given me a whole new set of grey hairs! He had a milk feed overnight which seemed to give him stomach cramps and he (and as a result, I) slept terribly. He slept this morning until 9.50am…I don’t think that he has EVER slept that late no matter how disrupted the nights (and believe me, we’ve shared a few of them!) Immunoglobulins were infused overnight uneventfully.
This morning we discovered that we are now on Yellow Precautions, our green poster has been replaced by a, yes you’ve guessed it, a yellow one! Unfortunately due to the large WARNING LURGY poster next to it, it is not the freedom pass that we were hoping for. The virus means that we still need to wear aprons and that W is still not allowed out into the corridor or the playroom for the moment. He watches the others through the glass door rather forlornly but it won’t be for too long, we hope. The consultant was pleased with his progress this morning and revealed that he commutes from Bristol and has a Labrador, so we must be in good hands!!
He was a little bit sick again this afternoon but then drank 150ml of ‘Rice Dream’. His nappies are once again frequent and they are putting up milk overnight again but still at only 5 mls/hour. He has been having tummy cramps again this evening but the nurse has just said that she can rustle up a better medicine than the codeine for the spasms. I’m also a bit worried that W has a cold brewing. He is now wide-awake reading his lift the flap Diggers book so it looks like we are in for another long evening…
Saturday +16
W was sick twice this morning so an eventful start but then was much chirpier through the day. He slept all evening for us so Rob dashed out for takeaway pizza and I had an illicit baby bottle of wine in a mug and we watched a few episodes of Spaced on DVD (thanks B). Rob went over the road, literally to his accommodation; it was nice to know that he was nearby. William woke up shortly after he left and was in a bit of discomfort so we got him some medicines and he calmed down shortly afterwards and we had a reasonable sleep with only a couple of interruption until 5am when he got a bit disturbed but settled again by 6.
Sunday +17
As Rob left the nurses accidentally woke William up after only ½ hour sleep and then he wouldn’t settle until after 10.30. He had a few rather dramatic nappies so they put up some extra IV fluid to replace his losses! He spent a long time playing contentedly with his cuddlies and a pen torch that one of the nurses gave him.
Monday +18
It was Grandma day again and a fresh supply of toys and tales of train rides. The Consultant came around this morning. He is still pleased with William’s progress but as his counts have fallen and because of the virus they will give him some more GCSF to give those cell counts a bit of a boost to help protect his gut lining. He is 100% engrafted which means all the cells are the donors and none there are no faulty Wiskott-Aldrich genes remaining…..
The Dietician also came by and we are to continue to offer just rice milk for a few more days until his tummy is a bit more rested. He had one sip today and pulled a face as he did yesterday but the first two days he had it he liked it. So he has only had water again today. His weight has only dropped a kilo since we came in and he is weighed twice daily so they won’t let him get too skinny. The introduction of food will also come gradually and be dairy/wheat free and that kind of thing initially and we will add new foods on alternate days to check that he tolerates them but all that is a little way ahead of us yet.
He is asleep for the moment and I think the nurses will be in soon with his TPN and the start of his evening IV medicines so I will say goodbye.
Thursday afternoon, William asked for something to eat by trying to clamber into his highchair and pointing frantically at his bib. I gave him some rice milk, as recommended, which he drank 50 mls of. The latter part of the evening proved a bit too exciting with W accidentally catching his NG tube and pulling it out. The second nurse to try got it back in but on the first two attempts W got himself in a right stew and did a rather scary retching/breathe holding trick which has given me a whole new set of grey hairs! He had a milk feed overnight which seemed to give him stomach cramps and he (and as a result, I) slept terribly. He slept this morning until 9.50am…I don’t think that he has EVER slept that late no matter how disrupted the nights (and believe me, we’ve shared a few of them!) Immunoglobulins were infused overnight uneventfully.
This morning we discovered that we are now on Yellow Precautions, our green poster has been replaced by a, yes you’ve guessed it, a yellow one! Unfortunately due to the large WARNING LURGY poster next to it, it is not the freedom pass that we were hoping for. The virus means that we still need to wear aprons and that W is still not allowed out into the corridor or the playroom for the moment. He watches the others through the glass door rather forlornly but it won’t be for too long, we hope. The consultant was pleased with his progress this morning and revealed that he commutes from Bristol and has a Labrador, so we must be in good hands!!
He was a little bit sick again this afternoon but then drank 150ml of ‘Rice Dream’. His nappies are once again frequent and they are putting up milk overnight again but still at only 5 mls/hour. He has been having tummy cramps again this evening but the nurse has just said that she can rustle up a better medicine than the codeine for the spasms. I’m also a bit worried that W has a cold brewing. He is now wide-awake reading his lift the flap Diggers book so it looks like we are in for another long evening…
Saturday +16
W was sick twice this morning so an eventful start but then was much chirpier through the day. He slept all evening for us so Rob dashed out for takeaway pizza and I had an illicit baby bottle of wine in a mug and we watched a few episodes of Spaced on DVD (thanks B). Rob went over the road, literally to his accommodation; it was nice to know that he was nearby. William woke up shortly after he left and was in a bit of discomfort so we got him some medicines and he calmed down shortly afterwards and we had a reasonable sleep with only a couple of interruption until 5am when he got a bit disturbed but settled again by 6.
Sunday +17
As Rob left the nurses accidentally woke William up after only ½ hour sleep and then he wouldn’t settle until after 10.30. He had a few rather dramatic nappies so they put up some extra IV fluid to replace his losses! He spent a long time playing contentedly with his cuddlies and a pen torch that one of the nurses gave him.
Monday +18
It was Grandma day again and a fresh supply of toys and tales of train rides. The Consultant came around this morning. He is still pleased with William’s progress but as his counts have fallen and because of the virus they will give him some more GCSF to give those cell counts a bit of a boost to help protect his gut lining. He is 100% engrafted which means all the cells are the donors and none there are no faulty Wiskott-Aldrich genes remaining…..
The Dietician also came by and we are to continue to offer just rice milk for a few more days until his tummy is a bit more rested. He had one sip today and pulled a face as he did yesterday but the first two days he had it he liked it. So he has only had water again today. His weight has only dropped a kilo since we came in and he is weighed twice daily so they won’t let him get too skinny. The introduction of food will also come gradually and be dairy/wheat free and that kind of thing initially and we will add new foods on alternate days to check that he tolerates them but all that is a little way ahead of us yet.
He is asleep for the moment and I think the nurses will be in soon with his TPN and the start of his evening IV medicines so I will say goodbye.
Monday, 15 October 2007
Sunday, 14 October 2007
View from the Kitchen
Well the view from the kitchen is not great but that is because it’s dark outside. I’m back in the kitchen at the computer after returning from London five minutes ago this will be quick as Cath is going to post Friday and Saturday’s news on Tuesday along with Monday’s, so that means I ‘m going to tell you about Sunday I think that’s clear. Well I managed to get a room in the parent’s hotel so I was able to stay up in town Saturday night and it was nice to sleep with Cath again even though there were two brick walls a gap of some ten metres and a drop of 25 between us, we were able to wave good night across the street though.
William decided that everything is going to well and although his platelets are above four hundred which means he has the same number as you dear reader. The rest of is blood count is dropping off fasted as he fights the virus, this afternoon his temperature was up a little but started to come back normally without potions. We where on the seventh Tractor Ted DVD thinking how well William’s insides were performing when in the space of half an hour he went through three nappies (note the way I managed not to have to spell Diarrhoea) but he as not been sick today which is good and only went green when he tried some rice milk (Cath has tried it too and she went green as well). As always his mood is good and never better than when cleaning his teeth, four times a day is just not enough! This virus is just to remind us that we are only on day 16 and it is along way to the 100 day mile stone and when you get lemons make lemonade, Cath is learning a lot about farming and should never be stuck for something to talk to her father in law about again.
Congratulations to Dave and Nicky on their new son (the best kind of baby) born on Thursday and also congratulations to Grandma and Grandpa Pepper as I know you are following Williams progress as well. And keeping Dave informed of what is happening as he is getting use to Fatherhood and more importantly not having the Internet fixed up in the new house yet.
William decided that everything is going to well and although his platelets are above four hundred which means he has the same number as you dear reader. The rest of is blood count is dropping off fasted as he fights the virus, this afternoon his temperature was up a little but started to come back normally without potions. We where on the seventh Tractor Ted DVD thinking how well William’s insides were performing when in the space of half an hour he went through three nappies (note the way I managed not to have to spell Diarrhoea) but he as not been sick today which is good and only went green when he tried some rice milk (Cath has tried it too and she went green as well). As always his mood is good and never better than when cleaning his teeth, four times a day is just not enough! This virus is just to remind us that we are only on day 16 and it is along way to the 100 day mile stone and when you get lemons make lemonade, Cath is learning a lot about farming and should never be stuck for something to talk to her father in law about again.
Congratulations to Dave and Nicky on their new son (the best kind of baby) born on Thursday and also congratulations to Grandma and Grandpa Pepper as I know you are following Williams progress as well. And keeping Dave informed of what is happening as he is getting use to Fatherhood and more importantly not having the Internet fixed up in the new house yet.
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