Thursday, 24 January 2008
Yes,our stay in GOS is finally over!!!!
We left GOS this morning at about 10.30 (before they could change their minds!!) after 18 weeks, 3 days and 10 1/2 hours (or thereabouts!!). His kidney function tests are a bit wonky still and his neutrophils are only .52 (like to see them over 1, usually get some boosting GCSF if they are under .50!!) but anyway with Philip acting as DADNAV (cheaper and more companiable than TomTom) Rob arrived before William awoke and after numerous trips to the car and congestion charge paying and the like we escaped! Made Rob laugh when reading out our number plate over the phone I said W for Wilbur, it was the first W word that came to mind!!!!! Very exciting to see the countryside and we had a good journey despite the temporary closing of some roads which necessitated a trip around Trafalgar Square! William seemed to know where we were when we got home and slept for some of the journey which worked out well. We went for a little stroll around the block and played. We have rigged his overnight milk up on an easel (the proper stuff is being delivered tomorrow!) and he is peacefully asleep and has had his meds, as prescribed. Alex, our lovely community nurse (I would have said that even if I didn't know that she reads the blog!) is coming out in the morning to do bloods and on Monday as well so we will see what those results bring. Whatever happens we shall try and make the most of every moment together.
Could this really be our last night here?
Saturday +114 and Sunday +115 and Monday +116
I met Nicky, Andy, Hannah and Ella at the Science Museum for lots of educational fun. After a pizza (just for a change) we met Rob and William. It was so lovely to see William back with his cousins after so long. There was a, who can get the wettest feet competition which, as a result of Nicky’s swift intervention (or sabotage depending on your perspective) on Ella’s behalf William won!! Planning our exit strategy continues and I am cautiously optimistic that I will be posting this not from Tuttis but from home!!!!! The metaphorical (although am secretly hoping, actual) champagne is on ice. No TPN tonight hoorah and milk up to 44mls/hour. This evening William is refusing to sleep and is rather overtired. I am off to get his meds in the feverent (and somewhat optimistic) hope that he will be asleep on my return (he wasn’t, he had managed to pull the IV pole towards him and zero the milk rate!) During my stoic, I am ignoring you stance he had already managed to unscrew a crucial part of his milk dispensing system resulting in a minor flood!!!!! I received some worrying news this morning from Claire that it looks like Lucy’s leukaemia is returning for the second time, please pray extra hard for Lucy and her whole family as they face this unimaginable horror.
Tuesday +117
Well it’s been all go here. I had an interesting meeting with the dietician discussing milk feeds and dishing out the formula at home and nutrition generally so lots to think about, a fluid target of 1.2 litres (to help flush his kidneys) including 800 mls of milk to start with. All aspects subject to much change as we progress. We also had a lovely meeting with our CNS Rachel who is overseeing our discharge and a bit of a what to do and not to do when you get home recap (as it is a wee (!) while since our first going home talk!!!!!!!!) She is fab. Lots of things are getting organised now and I have bags of medicines to take home (he only has to have meds about 16 times a day now!) Rounds came and went, no much to report there. Kidney function a bit wonky but otherwise doing ok. He is having his Immunoglobulins tonight to keep him going for the next 3 weeks. Had a lovely day with Mum culminating in (another) bottle of wine and making up words to fit the crossword when we got stuck.
Wednesday +118
Another super hectic day. Lots going on and even a phone call from Dr Peter Rudd in Bath welcoming back to the county (only a little prematurely, we hope) and assuring us of our open access to the childrens ward and their availability if we have any probs. Had a Hickman line safety talk which was v informative and useful. Collecting together some more bits and bobs just to ensure that the car is packed to the rafters. There is still a bit of concern regarding William’s creatanin levels which they will double check tomorrow and unless they are WAY up I think that they will let us go, with repeat blood tests on Friday and Monday and then back to clinic on Wedneday. There is so much going on in my head, I wouldn’t be surprised if it explodes! Phyllis and Dad joined Mum and I today, and I was able to enjoy a lovely meal with P and D whilst Mum held the fort here. We all went to the park to visit the sheep and ducks and play on the swings. It was lovely. I saw Keller’s Dad today and he is really doing very well now and they hope to be back on Fox in few days and generally not much longer in the hospital so hoorah. Claire popped around today and it was lovely to see her although would prefer if we could meet in coffee shops not wards (with our children and husbands safely in tow!) We will be thinking of and praying for you and your darling girl over the weeks ahead.
I met Nicky, Andy, Hannah and Ella at the Science Museum for lots of educational fun. After a pizza (just for a change) we met Rob and William. It was so lovely to see William back with his cousins after so long. There was a, who can get the wettest feet competition which, as a result of Nicky’s swift intervention (or sabotage depending on your perspective) on Ella’s behalf William won!! Planning our exit strategy continues and I am cautiously optimistic that I will be posting this not from Tuttis but from home!!!!! The metaphorical (although am secretly hoping, actual) champagne is on ice. No TPN tonight hoorah and milk up to 44mls/hour. This evening William is refusing to sleep and is rather overtired. I am off to get his meds in the feverent (and somewhat optimistic) hope that he will be asleep on my return (he wasn’t, he had managed to pull the IV pole towards him and zero the milk rate!) During my stoic, I am ignoring you stance he had already managed to unscrew a crucial part of his milk dispensing system resulting in a minor flood!!!!! I received some worrying news this morning from Claire that it looks like Lucy’s leukaemia is returning for the second time, please pray extra hard for Lucy and her whole family as they face this unimaginable horror.
Tuesday +117
Well it’s been all go here. I had an interesting meeting with the dietician discussing milk feeds and dishing out the formula at home and nutrition generally so lots to think about, a fluid target of 1.2 litres (to help flush his kidneys) including 800 mls of milk to start with. All aspects subject to much change as we progress. We also had a lovely meeting with our CNS Rachel who is overseeing our discharge and a bit of a what to do and not to do when you get home recap (as it is a wee (!) while since our first going home talk!!!!!!!!) She is fab. Lots of things are getting organised now and I have bags of medicines to take home (he only has to have meds about 16 times a day now!) Rounds came and went, no much to report there. Kidney function a bit wonky but otherwise doing ok. He is having his Immunoglobulins tonight to keep him going for the next 3 weeks. Had a lovely day with Mum culminating in (another) bottle of wine and making up words to fit the crossword when we got stuck.
Wednesday +118
Another super hectic day. Lots going on and even a phone call from Dr Peter Rudd in Bath welcoming back to the county (only a little prematurely, we hope) and assuring us of our open access to the childrens ward and their availability if we have any probs. Had a Hickman line safety talk which was v informative and useful. Collecting together some more bits and bobs just to ensure that the car is packed to the rafters. There is still a bit of concern regarding William’s creatanin levels which they will double check tomorrow and unless they are WAY up I think that they will let us go, with repeat blood tests on Friday and Monday and then back to clinic on Wedneday. There is so much going on in my head, I wouldn’t be surprised if it explodes! Phyllis and Dad joined Mum and I today, and I was able to enjoy a lovely meal with P and D whilst Mum held the fort here. We all went to the park to visit the sheep and ducks and play on the swings. It was lovely. I saw Keller’s Dad today and he is really doing very well now and they hope to be back on Fox in few days and generally not much longer in the hospital so hoorah. Claire popped around today and it was lovely to see her although would prefer if we could meet in coffee shops not wards (with our children and husbands safely in tow!) We will be thinking of and praying for you and your darling girl over the weeks ahead.
Wednesday, 23 January 2008
By the time you read this
I will be on the first leg of my journey to collect my family from GOSH. I'm driving down to my parents tonight and leaving early for London tomorrow. As long as William does not have a temperature between now and late tomorrow morning, he is coming home after 129 days. The next time Cath posts a blog it will be from home. Thank you everyone, we can now see the edge of the woods.
Saturday, 19 January 2008
Week 17
Saturday +107 Sunday +108 Monday +109
Met up with B, fun Dave and Tasha for a birthday lunch for B. Lovely dutch pancakes and then a rendez vous with Rob and William in the park to chase a few squirrels and try and get wet in the fountain. Otherwise the weekend went smoothly. We took our red virus alert poster down today and stopped wearing aprons. Milk feeds are continuing to increase.
Tuesday +110
Unfortunately they have detected noro virus in Williams’s poo again. It doesn’t mean that he has been re-infected more that it was hiding or that the levels were lower and just not detected. This is a bit of a setback but at least explains the continuing diarrhoea. William had a lovely day with Grandma and me and lots of fun painting with the play assistant. Grandma and I had a nice meal and a tipple in the evening. A silly student nurse used the intercom and woke William up for a couple of hours though and then he accidentally pulled his NG tube out (great!).
Wednesday +111
William had blood overnight (to boost his haemoglobin) so was a bit heftier again this morning. Otherwise all is ok except for a few funny eczema types spots that seem to be spreading but we have a new cream! His Kidney function is still a bit wonky though but nothing particular they want to do at the moment. William ate some mashed potato and pureed chicken…HOOOORAHHHH. I think that makes 60 days since the last solids (but if anyone thinks different then you are probably right!) He couldn’t wait to get in his high chair and get stuck in, although he only ate about a desert spoonful (which was quite enough for a first attempt). We are VERY excited. The TPN volume is also being further reduced as the milk increases.
Sadly it was Mum’s last day today and Dad came up too. As many of you will know Mum was (shockingly/scarily) recently (Christmas eve, nice timing) diagnosed with Non Hodgkins Lymphoma of the pereipheral T cell variety (a lot more exotic). She starts her Chemo this Friday so cross all your fingers and toes. Honestly, if she wanted to talk about something other than William she only had to say!!!!! Now it’s a whose got the most immuno suppressed neutrophils competition! The doctors are confident that they can treat her. Seriously though, William and I are going to miss her being here terribly but we will be chatting even more on the phone and before long, we will be visiting her!
Thursday +112
Granma and Poppa came to visit today and William had BAGS of fun with them, lots of sticking and charging around. We did spend a bit more time inside than we would have liked waiting for the doctors rounds and when they hadn’t come at 4 (and it was getting darker and rainier) I went in search of them only to discover that they had forgotten to tell me that they weren’t coming! Anyway when we finally got out William ran first around and then through the fountain in Russell Square! More chicken and mash and rice crispies (the new favourite)!
Friday +113
Noro virus negative again and talk of going home sometime soon…..here’s hoping! Lots of fun today with Uncle Nick, William rediscovered the joy of swings. Mums chemo has been delayed by a couple of weeks (bit complicated, due to drug trial that she is taking part in) so we are eagerly anticipating her return next week for a couple of days!
Met up with B, fun Dave and Tasha for a birthday lunch for B. Lovely dutch pancakes and then a rendez vous with Rob and William in the park to chase a few squirrels and try and get wet in the fountain. Otherwise the weekend went smoothly. We took our red virus alert poster down today and stopped wearing aprons. Milk feeds are continuing to increase.
Tuesday +110
Unfortunately they have detected noro virus in Williams’s poo again. It doesn’t mean that he has been re-infected more that it was hiding or that the levels were lower and just not detected. This is a bit of a setback but at least explains the continuing diarrhoea. William had a lovely day with Grandma and me and lots of fun painting with the play assistant. Grandma and I had a nice meal and a tipple in the evening. A silly student nurse used the intercom and woke William up for a couple of hours though and then he accidentally pulled his NG tube out (great!).
Wednesday +111
William had blood overnight (to boost his haemoglobin) so was a bit heftier again this morning. Otherwise all is ok except for a few funny eczema types spots that seem to be spreading but we have a new cream! His Kidney function is still a bit wonky though but nothing particular they want to do at the moment. William ate some mashed potato and pureed chicken…HOOOORAHHHH. I think that makes 60 days since the last solids (but if anyone thinks different then you are probably right!) He couldn’t wait to get in his high chair and get stuck in, although he only ate about a desert spoonful (which was quite enough for a first attempt). We are VERY excited. The TPN volume is also being further reduced as the milk increases.
Sadly it was Mum’s last day today and Dad came up too. As many of you will know Mum was (shockingly/scarily) recently (Christmas eve, nice timing) diagnosed with Non Hodgkins Lymphoma of the pereipheral T cell variety (a lot more exotic). She starts her Chemo this Friday so cross all your fingers and toes. Honestly, if she wanted to talk about something other than William she only had to say!!!!! Now it’s a whose got the most immuno suppressed neutrophils competition! The doctors are confident that they can treat her. Seriously though, William and I are going to miss her being here terribly but we will be chatting even more on the phone and before long, we will be visiting her!
Thursday +112
Granma and Poppa came to visit today and William had BAGS of fun with them, lots of sticking and charging around. We did spend a bit more time inside than we would have liked waiting for the doctors rounds and when they hadn’t come at 4 (and it was getting darker and rainier) I went in search of them only to discover that they had forgotten to tell me that they weren’t coming! Anyway when we finally got out William ran first around and then through the fountain in Russell Square! More chicken and mash and rice crispies (the new favourite)!
Friday +113
Noro virus negative again and talk of going home sometime soon…..here’s hoping! Lots of fun today with Uncle Nick, William rediscovered the joy of swings. Mums chemo has been delayed by a couple of weeks (bit complicated, due to drug trial that she is taking part in) so we are eagerly anticipating her return next week for a couple of days!
Tuesday, 15 January 2008
Blog Hijacking
Not really a Hijacking just until we have the "Just a Walk to the Beach" website up and running (which Dave and Cath are working on) I thought I would bring you all up to date with what is happening. The number of Long Distance Travellers has grown to 11 and they are coming from all directions (I will list them later). As you know we plan for the LDTs to meet on 14th September at Saunton sands to end their journeys in the surf. As we are all starting from different places and at different times we plan to have a launch party on the 24th May hopefully in North Devon this does depend on William’s health so it maybe a little closer to home. This is when we will be issuing sponsorship forms and T-shirts to the LDTs. As well as having a good time we will be taking photos to go on the website and to give to the press.
Now some of you are going to be left holding babies and small children while the rest of us are off having fun. So you don’t feel left out there will be a 10km walk along the Southwest Coastal path and back along the beach on the 14th. If all goes to plan as you get to the middle the LDTs will arrive so we can all do the last leg together.
Now the list it only seems fair to list in order of distance.
Steve will becoming from High Peak that’s somewhere up North.
Swimming to Devon in a pool Lisa (but never leaving Poynton, not sure if the pool will be full of water or wine).
To make sure Steve keeps to the speed limits he will be teaming up with Rob W in Stoke.
From London Tash and Jim, the rumour is on a tandem so that Jim does not have to wait at the top of every hill.
The Doctor on the team Dr Battam will be coming from Abingdon with his calculator to add up the money and miles but no plasters wrong kind of Doctor.
Coming from Basingstoke Andy with support car and plan to stay in 4 star hotels along the way. For others travelling in the same direction there will be room for luggage in the support car.
Once the website is finished and as long as his bike does not go missing Dave will be pedalling from Winchester.
Walking not cycling Rob C carrying an eight-foot surfboard, if only I was a body boarder.
From Church hill (Bristol) Ben carrying an egg or fish or maybe just a body board or even a kneeboard who knows.
From Plymouth B doing a bit of both walking and biking carrying a blow up toy (please remember there will be children on the beach). Note to other LDTs B has bagged the comedy surf transport only one blow up toy allowed and I want to see her standing up on it as she catches that wave.
Now some of you are going to be left holding babies and small children while the rest of us are off having fun. So you don’t feel left out there will be a 10km walk along the Southwest Coastal path and back along the beach on the 14th. If all goes to plan as you get to the middle the LDTs will arrive so we can all do the last leg together.
Now the list it only seems fair to list in order of distance.
Steve will becoming from High Peak that’s somewhere up North.
Swimming to Devon in a pool Lisa (but never leaving Poynton, not sure if the pool will be full of water or wine).
To make sure Steve keeps to the speed limits he will be teaming up with Rob W in Stoke.
From London Tash and Jim, the rumour is on a tandem so that Jim does not have to wait at the top of every hill.
The Doctor on the team Dr Battam will be coming from Abingdon with his calculator to add up the money and miles but no plasters wrong kind of Doctor.
Coming from Basingstoke Andy with support car and plan to stay in 4 star hotels along the way. For others travelling in the same direction there will be room for luggage in the support car.
Once the website is finished and as long as his bike does not go missing Dave will be pedalling from Winchester.
Walking not cycling Rob C carrying an eight-foot surfboard, if only I was a body boarder.
From Church hill (Bristol) Ben carrying an egg or fish or maybe just a body board or even a kneeboard who knows.
From Plymouth B doing a bit of both walking and biking carrying a blow up toy (please remember there will be children on the beach). Note to other LDTs B has bagged the comedy surf transport only one blow up toy allowed and I want to see her standing up on it as she catches that wave.
Saturday, 12 January 2008
Week 16
Monday +102 (January 7th)
Rob is wending his way back to Holt as I write this and I am holding the fort here, although I so wish that we were with him. William is still doing well, they are dropping the TPN to 16 hours a day which is progress and his milk is up to 21mls an hour for 20 hours. He is not drinking very much and is putting on some weight so the reduced TPN and a lower fluid target will help that. His neutrophils are back under 1 again, hopefully they will settle a bit higher in time. The new student nurses have been annoying me today (with their giggling, inexperience and lack of common sense, I know they have to start somewhere but must it be with William!? At least they don’t get to handle any drugs!!) Otherwise we’re doing OK (I think!).
Tuesday +103
A lovely day with Grandma and William. A lovely walk in the park and a visit to the sheep. Rounds came and went, we are still in ‘wait and see’ land. Unfortunately William was sick at 10pm and brought up his NG tube. That was replaced relatively untraumatically and peace restored once more. TPN down to 12 hours so more line free time.
Wednesday +104
William was sick again at 6am but (touch wood) not since. This time the NG tube stayed down, phew! Granma Curtis joined us this afternoon and we had a lovely time playing and seeing the animals. William has needed IV fluids today to replace losses and help his kidneys which are struggling a bit. This will undoubtedly make him even puffier/heavier but this is the lesser of two evils. They have consulted the renal team and William is having an ultrasound on his kidneys tomorrow just to check them out. They think that it is probably the Cyclosporin (the immunosuppressant) that is causing the issues as it effect different people differently so they are going to start reducing the levels. They would reduce the levels soonish anyway as we are so far from the transplant date. We will have to be on the lookout for GVH as the levels reduce so time will tell (as it usually does!). Rob is joining me later (hoorah) we have a meeting with the ‘team’ tomorrow which is a new thing that they are introducing for their most loyal customers! Will tell you all about it tomorrow…. Grandma will also be with us tomorrow, so a full house and a chance for Mum and I to escape for a nice lunch together. Ooh news flash have just seen trailer for ER on More 4 so not long until it will be on ‘real’ TV (cos I really need more hospital drama!!! If only the docs here were that dishy!)
Happy Birthday B!!!
Thursday +105
Well we didn’t get off to a great start with Mum’s arrival delayed by a cancelled train but we went off to the meeting leaving William in the capable (!?) hands of a student nurse (knowing that mum was only minutes away!!) and he was fine and not crying when she arrived! The meeting was with the consultant Cathy, our doctor at the moment Zoe, our going home nurse Rachel (Clinical Nurse Specialist who is fab!), our favourite Robin nurse Hayley and the physical therapist Annabel. It was a very constructive meeting, Cathy summarised where we are now and Zoe nodded a lot. We talked of William’s progress and kind of jokingly said that we would like to have William home for his Birthday but it looks likely that it will take a lot longer than we had hoped/thought of late. We talked about the support we have received or not as the case may be and are now getting more frequent play assistant visits. We are also getting a poster to go on the door with William’s schedule on it and our names as we know the nurses names (generally without looking at their badges!) and they still call us Mum and Dad!?!?!? Apparently they found our feedback very useful and probably got more from the meeting than we did. Lets hope we see a bit more of Rachel soon!!!!
Mum and I scooted off for lunch (which was lovely particularly the Tiramisu!) and a tipple or two. Meanwhile Rob was summoned to Ultrasound for a peak at W’s kidneys which are fine to look at. We had a nice afternoon and another trip to see the sheep and lots of slides on the slide despite the rain. Rob headed off, Mum and I had dinner after William finally went to sleep and I tried (rather unsuccessfully for an early night) and Mum went to her lovely Sick Children’s Trust accommodation.
Friday +106
What a busy day. They are a bit concerned about his increasing weight and high levels of certain stuff in his kidneys so more investigations are being lined up. I was in the shower when the Doctor arrived so hastily dressed for our morning consultation. I was having my first cup of tea when we were summoned to x ray for a chest x ray. On our return the play assistant, Becky came bearing bubbles and stickers which went down a storm. After a sleep and lunch for the ‘grown ups’ we went down for another ECHO (ultrasound on his heart). William was very, very good and lay very still. We saw the other end of his Hickman line on the screen right in his heart!?!?!?!? They saw some fluid on his chest but the heart stuff seems fine. They have given him some oral diuretics to help shift the excess fluid/weight but are monitoring him at the moment and will see how he goes. His heart rate is quite high. Mum headed off and William and I went for a little wander in Russell Square. Rob came nice and early and William went to sleep eventually.
Rob is wending his way back to Holt as I write this and I am holding the fort here, although I so wish that we were with him. William is still doing well, they are dropping the TPN to 16 hours a day which is progress and his milk is up to 21mls an hour for 20 hours. He is not drinking very much and is putting on some weight so the reduced TPN and a lower fluid target will help that. His neutrophils are back under 1 again, hopefully they will settle a bit higher in time. The new student nurses have been annoying me today (with their giggling, inexperience and lack of common sense, I know they have to start somewhere but must it be with William!? At least they don’t get to handle any drugs!!) Otherwise we’re doing OK (I think!).
Tuesday +103
A lovely day with Grandma and William. A lovely walk in the park and a visit to the sheep. Rounds came and went, we are still in ‘wait and see’ land. Unfortunately William was sick at 10pm and brought up his NG tube. That was replaced relatively untraumatically and peace restored once more. TPN down to 12 hours so more line free time.
Wednesday +104
William was sick again at 6am but (touch wood) not since. This time the NG tube stayed down, phew! Granma Curtis joined us this afternoon and we had a lovely time playing and seeing the animals. William has needed IV fluids today to replace losses and help his kidneys which are struggling a bit. This will undoubtedly make him even puffier/heavier but this is the lesser of two evils. They have consulted the renal team and William is having an ultrasound on his kidneys tomorrow just to check them out. They think that it is probably the Cyclosporin (the immunosuppressant) that is causing the issues as it effect different people differently so they are going to start reducing the levels. They would reduce the levels soonish anyway as we are so far from the transplant date. We will have to be on the lookout for GVH as the levels reduce so time will tell (as it usually does!). Rob is joining me later (hoorah) we have a meeting with the ‘team’ tomorrow which is a new thing that they are introducing for their most loyal customers! Will tell you all about it tomorrow…. Grandma will also be with us tomorrow, so a full house and a chance for Mum and I to escape for a nice lunch together. Ooh news flash have just seen trailer for ER on More 4 so not long until it will be on ‘real’ TV (cos I really need more hospital drama!!! If only the docs here were that dishy!)
Happy Birthday B!!!
Thursday +105
Well we didn’t get off to a great start with Mum’s arrival delayed by a cancelled train but we went off to the meeting leaving William in the capable (!?) hands of a student nurse (knowing that mum was only minutes away!!) and he was fine and not crying when she arrived! The meeting was with the consultant Cathy, our doctor at the moment Zoe, our going home nurse Rachel (Clinical Nurse Specialist who is fab!), our favourite Robin nurse Hayley and the physical therapist Annabel. It was a very constructive meeting, Cathy summarised where we are now and Zoe nodded a lot. We talked of William’s progress and kind of jokingly said that we would like to have William home for his Birthday but it looks likely that it will take a lot longer than we had hoped/thought of late. We talked about the support we have received or not as the case may be and are now getting more frequent play assistant visits. We are also getting a poster to go on the door with William’s schedule on it and our names as we know the nurses names (generally without looking at their badges!) and they still call us Mum and Dad!?!?!? Apparently they found our feedback very useful and probably got more from the meeting than we did. Lets hope we see a bit more of Rachel soon!!!!
Mum and I scooted off for lunch (which was lovely particularly the Tiramisu!) and a tipple or two. Meanwhile Rob was summoned to Ultrasound for a peak at W’s kidneys which are fine to look at. We had a nice afternoon and another trip to see the sheep and lots of slides on the slide despite the rain. Rob headed off, Mum and I had dinner after William finally went to sleep and I tried (rather unsuccessfully for an early night) and Mum went to her lovely Sick Children’s Trust accommodation.
Friday +106
What a busy day. They are a bit concerned about his increasing weight and high levels of certain stuff in his kidneys so more investigations are being lined up. I was in the shower when the Doctor arrived so hastily dressed for our morning consultation. I was having my first cup of tea when we were summoned to x ray for a chest x ray. On our return the play assistant, Becky came bearing bubbles and stickers which went down a storm. After a sleep and lunch for the ‘grown ups’ we went down for another ECHO (ultrasound on his heart). William was very, very good and lay very still. We saw the other end of his Hickman line on the screen right in his heart!?!?!?!? They saw some fluid on his chest but the heart stuff seems fine. They have given him some oral diuretics to help shift the excess fluid/weight but are monitoring him at the moment and will see how he goes. His heart rate is quite high. Mum headed off and William and I went for a little wander in Russell Square. Rob came nice and early and William went to sleep eventually.
Monday, 7 January 2008
Just a walk to the beach up date
Just returned home to find a stack of emails from you mad people who have signed up to take part in this dash to the surf and sand. As I'm doing the walking Cath is doing the running of the back office. At present she is writing long lists of things to do but one thing we have decided is that the journey will end on Sunday 14th September. So start breaking in hiking boots, oiling bikes and waxing down surfboards. More news soon from Team Curtis.
Just a walk to the beach 
Subscribe to:
Posts (Atom)
