We are so lucky to be celebrating William’s second birthday at home. We sat in a meeting with William’s care team in GOSH at the start of the year and said that we would like to be home for his birthday, they said that would not be possible. The good thing was that no one told William and he improved so much that we made it with weeks to spare! On such a special happy day you can’t help think of those you have left behind and what they have to carry on going through.
After an early start, more to do with mummy wanting to open presents than William, we brought William down stairs to a heavily decorated living room. Not quite sure how Cath found the time after making cakes yesterday she had managed to make paper chains out of wrapping paper and a banner as well, not to mention the balloons and fairy lights.
It was not all presents and cake, Alex came to take bloods and change William’s central line dressing. After a pit stop at the chemist for Granma Sue and Grandpa Doug to pick up some strips that didn’t come in the dressings box the change was completed and Alex rushed off to teach some nurses in Trowbridge.After William had recharged his battery and we had eaten a lovely lunch, Pappa and Granma Ruth came bearing many gifts and after a fog of flying wrapping paper he emerged with what can best be described as a misshapen washing up bowl which he sits in and we spin him around the floor. Great fun! It has been a lovely day, thank you everyone for thinking of us.
Thursday, 7 February 2008
Friday, 1 February 2008
Monday +123 – Friday +127
We have made it through a whole week at home! (touch wood quickly, William has a teeny bit of a temperature!) It has been very tiring and I am still adjusting. William has still been unsettled at night although we have reduced the milk further. He has been in good spirits all week and lots of fun. Grandma and Grandpa came up on Tuesday and the day flew by. We went up to GOS on Wednesday. The journey went as well as could be expected although we arrived a little later than we had planned. Clinic was rather stressful. On arrival William spied a big ride on racing car and made a bee line for it, unfortunately we had to hold him back (physically) with his very noisy protests until we found out if he was noro virus negative and ok to mix with the other children. Fortunately he is, so we were able to let him play with everyone and all the toys and he was able to get on the car, much to everyone’s relief. We saw an immunology doctor who we had never met before, which is always useful!!! However, William is doing very well and they have reduced his immunosuppressive drugs further and we are in the process of reducing and removing his diuretics and anti sickness meds, so all good. We caught up with a few families who we know and some are doing well, others not so well. I went to see Claire, Adrian and Lucy who had just been admitted to Lion ward for the next stage of their fight to get Lucy well. I was SO impressed with Lucy who can not only correctly identify and say diamond but can also pick out colours in both English and French (I am sure it is just the age difference, she is almost 2 weeks older than William!! No pressure William but I am expecting great things from you in the next few days!!!) After about 3 hours in London we headed happily west again. Thursday and today have passed relatively uneventfully (which is the way we like it).
Sunday, 27 January 2008
Update from home!
Friday +120 Saturday +121 and Sunday +122
We had a good night, despite me remembering at about 1am that I had forgotten William’s 10pm meds and leaping out of bed! Some of the milk giving equipment arrived but not all so we are making do for the moment and they are sending more bottles and piping (that’s not the technical term, funnily enough!) to arrive Saturday morning. William is a bit tired and breathing a bit heavily. His blood sample from Friday showed a low haemoglobin but was probably just a bit dilute, we had it repeated in Bath on Saturday morning when it was fine. He has been enjoying being at home and playing with all sorts of things (some that he shouldn’t!!) although has been tired. Granma and Poppa came to visit this morning and we all took Gillie for a walk and opened the last of our Christmas gifts! It was so lovely to see Gillie again, he is staying away for a few more days until we get ourselves more sorted and Wednesday’s trip to GOS out of the way. William has had two very unsettled nights with tummy ache. We have lowered the milk levels a bit now and are hoping for more than one hour of uninterrupted sleep at a time tonight!!
We had a good night, despite me remembering at about 1am that I had forgotten William’s 10pm meds and leaping out of bed! Some of the milk giving equipment arrived but not all so we are making do for the moment and they are sending more bottles and piping (that’s not the technical term, funnily enough!) to arrive Saturday morning. William is a bit tired and breathing a bit heavily. His blood sample from Friday showed a low haemoglobin but was probably just a bit dilute, we had it repeated in Bath on Saturday morning when it was fine. He has been enjoying being at home and playing with all sorts of things (some that he shouldn’t!!) although has been tired. Granma and Poppa came to visit this morning and we all took Gillie for a walk and opened the last of our Christmas gifts! It was so lovely to see Gillie again, he is staying away for a few more days until we get ourselves more sorted and Wednesday’s trip to GOS out of the way. William has had two very unsettled nights with tummy ache. We have lowered the milk levels a bit now and are hoping for more than one hour of uninterrupted sleep at a time tonight!!
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!
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