Monday, 7 January 2008
Saturday +100 and Sunday +101
100 days since transplant and all is well on that score so that is something to celebrate. Lets hope it won’t be long before we can head on home. We have spent a nice weekend all together and enjoyed our trips to the parks. The bare walls left by the removal of the Christmas cards and decorations have been more than filled by the enormous tractor posters and our exciting sticking collages! We had a nasty NG tube replacement incident on Saturday morning but we have all recovered now.
Saturday, 5 January 2008
More ramblings..
Wednesday +97
Mum was able to join me for the day. We went and saw the 2 sheep in Coram Fields who were looking a bit chilly, as were we! William has been in good form today. The milk is up to 11 mls and hour and his weight and fluid balances are more stable. His anti diorrhea secretion medicine has been reduced in strength with a view to stopping it all together by the end of the week. He did have Immunoglobulins last night but otherwise was very peaceful and I was able to watch Sense and Sensibility more or less uninterrupted. Unfortunately his sub cutaneous infusion decided that it wasn’t going to run through anymore at 5.45am this morning and we had to put another needle in which wasn’t a popular decision (with anyone). We did all get some more sleep though. Jack went home today which is marvellous. He had his transplant the day before William so they have been here all the while that we have. It will be weird not to see his parents around but we will keep our fingers firmly crossed for the future for them all. I also saw Justina and Eldoras our next door neighbours from Fox, they went home the Sunday before Christmas and are also doing well. It’s harder to get to know people on Robin because there is no sitting around in the corridor and we are all tucked behind double air lock doors but occasionally the kitchen provides a chatting opportunity. I have just worked out that William had been 40 days without milk or food so feel that we should celebrate the reintroduction of the milk a bit more…so HOORAH!
Thursday +98
A relaxing morning with my boy and then Granma and Poppa joined us for another expedition. Dressed for the Arctic conditions (although without the snow) we ventured back to see the sheep. William was reluctant to leave the park but much cheered by some sticking and drawing back in the room and lots of fun with Granma and Poppa and his new amazing collection of really large tractor posters (so thanks to all at New Holland, Claas and Massey Ferguson for brightening our walls and potentially those of the entire ward such are the size and number of posters). William has had a third virus free poo so Hoorah for that! His engraftment is still 100% so double hoorah! The platelets may have fallen because there is still comparatively little marrow producing the cells and they were putting all their efforts into helping William get through the line infection. He has had his last dose of antibiotics for that today. I had a lovely meal with Ruth and Phillip in the semi darkness of the room this evening mmm I love mango chicken! Must get back to my boys now (that is Ewan and Charley and their Long Way Down book)!
Friday +99
Moan, moan, moan, moan, and those nurses! and a lovely lunch in the room with Di! No, all is fine really, just a bit fed up of never having control of anything and always fitting around a schedule which changes at a moments notice and no one tells you about until it is actually happening! Surely I should be used to that by now though (says Rob, thanks for that! (who it transpires was referring to our life outside the hospital (can I remember what that was like?)) Confused? me too but a welcome return of the brackets!J William is fine and a happy chappy today even though our walk was rescheduled to after dark when the parks are all closed anyway and it was raining! Anyway Rob is back here today so must......aarggh go and stop that syringe driver beeping!!
Mum was able to join me for the day. We went and saw the 2 sheep in Coram Fields who were looking a bit chilly, as were we! William has been in good form today. The milk is up to 11 mls and hour and his weight and fluid balances are more stable. His anti diorrhea secretion medicine has been reduced in strength with a view to stopping it all together by the end of the week. He did have Immunoglobulins last night but otherwise was very peaceful and I was able to watch Sense and Sensibility more or less uninterrupted. Unfortunately his sub cutaneous infusion decided that it wasn’t going to run through anymore at 5.45am this morning and we had to put another needle in which wasn’t a popular decision (with anyone). We did all get some more sleep though. Jack went home today which is marvellous. He had his transplant the day before William so they have been here all the while that we have. It will be weird not to see his parents around but we will keep our fingers firmly crossed for the future for them all. I also saw Justina and Eldoras our next door neighbours from Fox, they went home the Sunday before Christmas and are also doing well. It’s harder to get to know people on Robin because there is no sitting around in the corridor and we are all tucked behind double air lock doors but occasionally the kitchen provides a chatting opportunity. I have just worked out that William had been 40 days without milk or food so feel that we should celebrate the reintroduction of the milk a bit more…so HOORAH!
Thursday +98
A relaxing morning with my boy and then Granma and Poppa joined us for another expedition. Dressed for the Arctic conditions (although without the snow) we ventured back to see the sheep. William was reluctant to leave the park but much cheered by some sticking and drawing back in the room and lots of fun with Granma and Poppa and his new amazing collection of really large tractor posters (so thanks to all at New Holland, Claas and Massey Ferguson for brightening our walls and potentially those of the entire ward such are the size and number of posters). William has had a third virus free poo so Hoorah for that! His engraftment is still 100% so double hoorah! The platelets may have fallen because there is still comparatively little marrow producing the cells and they were putting all their efforts into helping William get through the line infection. He has had his last dose of antibiotics for that today. I had a lovely meal with Ruth and Phillip in the semi darkness of the room this evening mmm I love mango chicken! Must get back to my boys now (that is Ewan and Charley and their Long Way Down book)!
Friday +99
Moan, moan, moan, moan, and those nurses! and a lovely lunch in the room with Di! No, all is fine really, just a bit fed up of never having control of anything and always fitting around a schedule which changes at a moments notice and no one tells you about until it is actually happening! Surely I should be used to that by now though (says Rob, thanks for that! (who it transpires was referring to our life outside the hospital (can I remember what that was like?)) Confused? me too but a welcome return of the brackets!J William is fine and a happy chappy today even though our walk was rescheduled to after dark when the parks are all closed anyway and it was raining! Anyway Rob is back here today so must......aarggh go and stop that syringe driver beeping!!
Thursday, 3 January 2008
Do You have anything better to do in September
Just a walk to the beach……
…to support Jeans for Genes and
The Sick Children’s Trust.
…to support Jeans for Genes and
The Sick Children’s Trust.
The Challenge
To get from your doorstep to Saunton Sands in North Devon by any means possible WITHOUT using an engine. You must take with you something to catch a wave with.
What do we need from you?
The commitment and resources to make your way from your home, camping as necessary en route to Saunton Sands to arrive on a specified day to catch that wave.
An enthusiasm for raising sponsorship and willingness to take part in any publicity surrounding the event to promote both of the charities and raise awareness.
Tuesday, 1 January 2008
Happy Holidays
Christmas Eve +88
Well we have a room full today as Grandma, Grandpa and Uncle Nick have landed to try and bring some sort of normality to Christmas. William continues to have high temperatures and is shaking a bit, the paracetamol does not seem to be doing much to control the temperture and William is off the scale on the thermometers. It was rounds today as tomorrow the consultant will be tucking into turkey at home and the ward will have weekend staffing levels. William is going to start milk feeds later on in the week but his fluid balance is a problem as he is holding onto too much liquid from his TPN so they are going to give him diuretics. This has made him very heavy and puffy and put his blood pressure up too. William has spent most of the day in his cot only to sit on mummy’s lap for a little while. This is the poorliest that he has been.
Christmas day +89
Merry Christmas
Well it’s raining and William rose late so we were not ready for the arrival of the Battam troop at just gone nine. He has been more chipper this morning but his temperature keeps breaking through the paracetamol. Father Christmas filled William’s stocking and a hospital pillowcase as well and then returned during the morning with dancing reindeer and another present. Grandma, Grandpa and Uncle Nick left for Christmas lunch at one of the local hostelries. William fell asleep and Cath and I had a quiet lunch. For all of you still getting over the stress of cooking Turkey and all the trimming here’s our menu: Veggie haggis, potato gratin, honey roasted carrots and parsnips served with port and cranberry sauce and not forgetting the bread sauce total cooking time eight minutes. No room for pud, which was good as Waitrose had run out! The best present we had was a norovirus negative stool sample only another two and the virus will be gone. Fingers crossed the next test is Thursday followed by Monday (New Year’s Eve).
Boxing Day +90
William continues to improve and the antibiotics seem to be doing the job. Grandma and Grandpa took Cath and Uncle Nick out for a nice lunch and a few drinks so William and I had the place to ourselves. Grandma brought back some cute min jam jar sized Heinz ketchups for Rob that were acquired (Lisa style!!) from the hotel and I think that they were his best present! We had lots of fun in the afternoon balloon modelling (that’s shaping them, not wearing them!)
Thursday +91
Milk feeds have started at one ml an hour for those of you still using old money that’s a teaspoon every five hours. This means we had the addition of another pump on the IV stand, bringing the number of machines to eight, putting the pouches of TPN almost out of reach of the nurses. We are also running out of electrical sockets as a number don’t work anyway. It was my turn to go out for lunch today as Grandma and Poppa came up and took Cath and I out for a burger. We stopped at the DVD store and spent some of William’s Christmas money for him on Curious George, which seemed to go down well. William awoke from his lunchtime nap and was delighted to find both sets of Grandparents in the room as Sue and Doug had baby sat while we were out.
Friday +92
Well we are not quite pacing the room but I sure the nurse was getting a little annoyed with us constantly asking whether the results were back yet. We have been waiting all day for the results from the stool sample taken yesterday and for engraftment test as well. Cath and I went down to Fat Face to spend vouchers and Christmas money and to make uses of the Battam Baby sitting Service or BBSS, before they pack up and head off back to the seaside. William’s temperature is around 37.5 for the last two days which is much better than 40 but not 36.5 which is normal but you find yourself being quite happy with any reading below 39 and it quickly becomes the norm. The milk feed continues to go well and is being increased at a ml an hour.
Saturday +93
We went outside!!!!!!!
Second stool sample norovirus negative!
Sunday +94
We went outside again!!!! With Granma and Poppa.
Monday +95 New Years Eve
We went outside again and saw Tasha!!!!
We are allowed out as long as we avoid strange people who might have lurgies and busy places. Fortunately there are a few small squares (with grass in!) around here that are not too busy, there are even wooden tractors in one of them! William was not at all fazed by his first trip outside but pointed excitedly at the cars, trees and lights. He even walked a little bit. It was amazing to all go out together as a family. His antibiotics are down to one and his platelet levels are recovering nicely after dipping down to a scary pre transplant 30. His neutrophils have been boosted a couple of times with a bit of GCSF so they are quite numerous at the moment. Rob and I saw the new year in with a little bottle of champagne.
Tuesday +96 New Year’s Day
HAPPY NEW YEAR!
Well we have a room full today as Grandma, Grandpa and Uncle Nick have landed to try and bring some sort of normality to Christmas. William continues to have high temperatures and is shaking a bit, the paracetamol does not seem to be doing much to control the temperture and William is off the scale on the thermometers. It was rounds today as tomorrow the consultant will be tucking into turkey at home and the ward will have weekend staffing levels. William is going to start milk feeds later on in the week but his fluid balance is a problem as he is holding onto too much liquid from his TPN so they are going to give him diuretics. This has made him very heavy and puffy and put his blood pressure up too. William has spent most of the day in his cot only to sit on mummy’s lap for a little while. This is the poorliest that he has been.
Christmas day +89
Merry Christmas
Well it’s raining and William rose late so we were not ready for the arrival of the Battam troop at just gone nine. He has been more chipper this morning but his temperature keeps breaking through the paracetamol. Father Christmas filled William’s stocking and a hospital pillowcase as well and then returned during the morning with dancing reindeer and another present. Grandma, Grandpa and Uncle Nick left for Christmas lunch at one of the local hostelries. William fell asleep and Cath and I had a quiet lunch. For all of you still getting over the stress of cooking Turkey and all the trimming here’s our menu: Veggie haggis, potato gratin, honey roasted carrots and parsnips served with port and cranberry sauce and not forgetting the bread sauce total cooking time eight minutes. No room for pud, which was good as Waitrose had run out! The best present we had was a norovirus negative stool sample only another two and the virus will be gone. Fingers crossed the next test is Thursday followed by Monday (New Year’s Eve).
Boxing Day +90
William continues to improve and the antibiotics seem to be doing the job. Grandma and Grandpa took Cath and Uncle Nick out for a nice lunch and a few drinks so William and I had the place to ourselves. Grandma brought back some cute min jam jar sized Heinz ketchups for Rob that were acquired (Lisa style!!) from the hotel and I think that they were his best present! We had lots of fun in the afternoon balloon modelling (that’s shaping them, not wearing them!)
Thursday +91
Milk feeds have started at one ml an hour for those of you still using old money that’s a teaspoon every five hours. This means we had the addition of another pump on the IV stand, bringing the number of machines to eight, putting the pouches of TPN almost out of reach of the nurses. We are also running out of electrical sockets as a number don’t work anyway. It was my turn to go out for lunch today as Grandma and Poppa came up and took Cath and I out for a burger. We stopped at the DVD store and spent some of William’s Christmas money for him on Curious George, which seemed to go down well. William awoke from his lunchtime nap and was delighted to find both sets of Grandparents in the room as Sue and Doug had baby sat while we were out.
Friday +92
Well we are not quite pacing the room but I sure the nurse was getting a little annoyed with us constantly asking whether the results were back yet. We have been waiting all day for the results from the stool sample taken yesterday and for engraftment test as well. Cath and I went down to Fat Face to spend vouchers and Christmas money and to make uses of the Battam Baby sitting Service or BBSS, before they pack up and head off back to the seaside. William’s temperature is around 37.5 for the last two days which is much better than 40 but not 36.5 which is normal but you find yourself being quite happy with any reading below 39 and it quickly becomes the norm. The milk feed continues to go well and is being increased at a ml an hour.
Saturday +93
We went outside!!!!!!!
Second stool sample norovirus negative!
Sunday +94
We went outside again!!!! With Granma and Poppa.
Monday +95 New Years Eve
We went outside again and saw Tasha!!!!
We are allowed out as long as we avoid strange people who might have lurgies and busy places. Fortunately there are a few small squares (with grass in!) around here that are not too busy, there are even wooden tractors in one of them! William was not at all fazed by his first trip outside but pointed excitedly at the cars, trees and lights. He even walked a little bit. It was amazing to all go out together as a family. His antibiotics are down to one and his platelet levels are recovering nicely after dipping down to a scary pre transplant 30. His neutrophils have been boosted a couple of times with a bit of GCSF so they are quite numerous at the moment. Rob and I saw the new year in with a little bottle of champagne.
Tuesday +96 New Year’s Day
HAPPY NEW YEAR!
Monday, 24 December 2007
Christmas Eve Update
Splashed out on some T mobile minutes as usual internet haunt closed until January, I ask you anyone would think it was a holiday season?! Keller is a bit better and moving up to Fox soon which is great news. William still a bit under the weather but we are all looking forward to seeing the Battams later, our microwave christmas lunch (no really, we are having veggie haggis and all the trimmings!) and to seeing if the jolly chap in the red outfit finds us! The nurses are decked in tinsel cos it is the season to be jolly! Anyway must dash round to Waitrose before they sell out of sprouts and stock up on Christmas cheer! Happy Christmas all.
A Christmas message from the Curtis family, well if this isn't the time for sentimental nonsense then I don't know when is!?!?
We would like to take this opportunity (with our captive audience!) to thank you all for all your support this year. You each play such an important part in our lives. Our lives are more wonderful because you are part of them. We have been so touched by all your support and concern for us and for our baby boy during this difficult time. Give each other a hug and tell those people who you love, that you love them this Christmas. Hold your loved ones close and treasure the times that you spend together whatever you are doing. Spare a prayer for anyone suffering in the world and pray for a brighter future. And remember, when God gives you lemons make lemonade (or mulled wine!) Merry Christmas and a Happy New Year.
Saturday +86 and Sunday +87
William has a hickman line infection which is causing him some very high temperatures (40!!!). They have identified the bacteria and are targeting it with antibiotics but he is a bit poorly with it. So fingers crossed he gets on top of it soon. Poppa, Auntie Nicky and Uncle Andy saw William for the first time since his transplant which was brilliant although when Nicky and Andy came in he fell asleep! Granma spent the afternoon playing with him and Daddy whilst Poppa took the rest of us out for Pizza. It was lovely to see them all especially Ella whom I haven’t seen since we came to London. Hannah and Ella are such fun. It was a lovely time.
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