Good Evening Everyone,
How are my fellow bloggers this evening? Good wishes to everyone, we hope you are all well. Fantastic…another day done! (Not that I’m wishing my life away as I'm reminded...it’s the journey that counts!!). We have all had a very busy day; Phoebe woke this morning in a lovely mood and she was full of beautiful, soft smiles. These first smiles of the morning are extra special; she just fills me with this adoring fuzziness!!
Phoebe’s pain has increased a level and, considering this, she has been remarkable. We decided to start her on Morphine today at 1ml per hour and by 9.00pm this evening we asked for this to be increased to 2ml/hour as she was very unsettled. It’s now 9.10pm and she's well on her way to the Night Garden to see Iggle Piggle I’m sure!!! On the eating front, Phoebs hasn’t had much of an appetite today but did manage some mashed potato at lunch. We have noticed her taste buds are changing constantly and this can be due to the medicines she is receiving. The quantities of the two special IV feeds to supplement her change daily depending on her blood results.
We had some lovely time this morning reading books and playing, just having a very relaxed time of it. When Phoebe is ready in the morning and all her bloods have been taken I like to just leave her sat in her cot for half an hour to do exactly as she pleases. She is so restrained most of the time and must feel like she has lost such a lot of her control on things. At home she has lots of freedom, which is great for her and her confidence, so it’s important to try and capture a little of that here.
Before we knew it time was ticking along and next thing it was lunch time. We had a lovely knock at the window from my cousin Margaret and her husband Frank. Phoebe just gave them the biggest beam. Margaret (or 'Maggie' as she is sometimes called) is one of Phoebe’s God Mothers. She usually has Phoebe on Wednesdays and she’s missed her so much since we’ve been in Manchester. Margaret couldn’t leave it a day longer without seeing Phoebs as she had serious withdrawal symptoms…oh and of course not seeing us too!!! Margaret and Frank came with arms full of gifts and you’d think they were on Crackerjack!! (for the older folk!!). They brought Phoebe her first Dolly and pushchair; she loved it, along with lots of cards too.
You may remember me telling you about Auntie Winnie who recently had a fall; well Auntie Winnie is Margaret’s Mum. She is out of hospital now and Margaret has been looking after her Mum and Dad over the last couple of weeks.
Margaret’s friend Edith is in a prayer group and she sent a lovely gift for Phoebe with a beautiful hand made card containing lovely messages from the members of the group. The time and love taken to make this card truly humbled us. It’s hard to explain the feeling when you know so many people be it friends, family or even people who we’ve yet to meet who are saying prayers for Phoebe and us. This leaves me overwhelmed and frankly speechless.
How are my fellow bloggers this evening? Good wishes to everyone, we hope you are all well. Fantastic…another day done! (Not that I’m wishing my life away as I'm reminded...it’s the journey that counts!!). We have all had a very busy day; Phoebe woke this morning in a lovely mood and she was full of beautiful, soft smiles. These first smiles of the morning are extra special; she just fills me with this adoring fuzziness!!
Phoebe’s pain has increased a level and, considering this, she has been remarkable. We decided to start her on Morphine today at 1ml per hour and by 9.00pm this evening we asked for this to be increased to 2ml/hour as she was very unsettled. It’s now 9.10pm and she's well on her way to the Night Garden to see Iggle Piggle I’m sure!!! On the eating front, Phoebs hasn’t had much of an appetite today but did manage some mashed potato at lunch. We have noticed her taste buds are changing constantly and this can be due to the medicines she is receiving. The quantities of the two special IV feeds to supplement her change daily depending on her blood results.
We had some lovely time this morning reading books and playing, just having a very relaxed time of it. When Phoebe is ready in the morning and all her bloods have been taken I like to just leave her sat in her cot for half an hour to do exactly as she pleases. She is so restrained most of the time and must feel like she has lost such a lot of her control on things. At home she has lots of freedom, which is great for her and her confidence, so it’s important to try and capture a little of that here.
Before we knew it time was ticking along and next thing it was lunch time. We had a lovely knock at the window from my cousin Margaret and her husband Frank. Phoebe just gave them the biggest beam. Margaret (or 'Maggie' as she is sometimes called) is one of Phoebe’s God Mothers. She usually has Phoebe on Wednesdays and she’s missed her so much since we’ve been in Manchester. Margaret couldn’t leave it a day longer without seeing Phoebs as she had serious withdrawal symptoms…oh and of course not seeing us too!!! Margaret and Frank came with arms full of gifts and you’d think they were on Crackerjack!! (for the older folk!!). They brought Phoebe her first Dolly and pushchair; she loved it, along with lots of cards too.
You may remember me telling you about Auntie Winnie who recently had a fall; well Auntie Winnie is Margaret’s Mum. She is out of hospital now and Margaret has been looking after her Mum and Dad over the last couple of weeks.
Margaret’s friend Edith is in a prayer group and she sent a lovely gift for Phoebe with a beautiful hand made card containing lovely messages from the members of the group. The time and love taken to make this card truly humbled us. It’s hard to explain the feeling when you know so many people be it friends, family or even people who we’ve yet to meet who are saying prayers for Phoebe and us. This leaves me overwhelmed and frankly speechless.
OK - in my case not for too long!!!
Aaah and then they arrived…Mum said with a lovely reassuring smile, "The troops are here!!", as I walked towards them in the corridor; it was great to see them. Our family are truly an amazing bunch of people and, as my Dad likes to remind me, "we are all in this together". We have always been a fairly close family and it has been even more so from the first time we were admitted to Cheethams with Eleanor. Since having the girls it has always been felt that Eleanor and Phoebe belong to all the family members. I just got them here…but isn’t that what family is all about? (Feel like I’m on an episode of BBC1’s Bread!!) You are our rocks. Thank you for making this journey so much easier for us to endure.
The troops also came with some lovely presents and cards. To all of our dear friends over in Waterford, Ireland- A big hello to Owen and Carmel, thanks so much for the DVD’s – these are great for Phoebe (and us!!). Thanks for all your good well wishes and prayers; we truly appreciate all of your love and support. To our friends Audrey, Paul, Darren and Catherine and Audrey’s Dad, Tom; thanks so much for the cuddly reindeer for Phoebe and all your prayers. Bless you guys. Another special thank you goes to Tom for including Phoebe on your prayer list at church too. It was lovely to see all of you on your last visit to Stoke and we look forward to our next trip to Waterford. It's a lovely place guys so get yourselves over there!!!
Today I managed to get out for my power walk around the hospital; Margaret came with me and updated me on everything at home. I just took really deep breaths, it was really refreshing, and I will really make time to do this everyday!!
Remember me telling you about the adhesive tape removal pads yesterday? Well...Ade surpassed himself today; he made a few calls and eventually spoke to the UK Distributor to ask them about the possibility of sourcing some of the removal pads as they don’t have any in hospital. Well, the good news is they have very kindly donated 1,000 to be delivered to the ward by courier. Fantastic work there Ade, well done Hun.
[Aw, ta chuck! On looking further at their site I thought that these would be brilliant right now too. - Ade]
Now, one of the things I forgot to tell you about was the lovely visit we had here from Santa. He called early to see all of the children in hospital and brought lots of nice presents. Phoebe was a little scared on seeing him when he looked through the window, bless her. However, she did like the present we opened…it was a jigsaw!!
Our experience of hospital life here in Manchester this time around has been extremely positive and you may remember me saying that if we needed to be in hospital then probably the nicest time would actually be Christmas; there just seems to be a happier vibe during the festive season. The nurses have let us know that we will be having some famous faces popping in from time to time. Today, we had a lovely visit from Boxer, Joe Egan (bizarrely, we have a good friend called Jo Egan too in Margate!!! – Hi Jo and Cliff!!). Joe and his wife Ruth were really lovely bless them; they very kindly brought gifts for all of the children on the unit. We were introduced to Charmaine Wilkinson who is the Appeals Director of the Five Stars Scanner Appeal. This is dedicated to raising £1 Million to purchase a new MRI scanner for the Royal Manchester Children’s Hospital. Joe and a few more celebrities such as Max Beesley, Ryan Giggs and others are lending their support. Having already raised £750,000, they need to raise just £250,000 more by June of next year. I’m sure they will do it, so if you fancy donating for a great cause go to their website at www.fivestarsappeal.co.uk
Aaah and then they arrived…Mum said with a lovely reassuring smile, "The troops are here!!", as I walked towards them in the corridor; it was great to see them. Our family are truly an amazing bunch of people and, as my Dad likes to remind me, "we are all in this together". We have always been a fairly close family and it has been even more so from the first time we were admitted to Cheethams with Eleanor. Since having the girls it has always been felt that Eleanor and Phoebe belong to all the family members. I just got them here…but isn’t that what family is all about? (Feel like I’m on an episode of BBC1’s Bread!!) You are our rocks. Thank you for making this journey so much easier for us to endure.
The troops also came with some lovely presents and cards. To all of our dear friends over in Waterford, Ireland- A big hello to Owen and Carmel, thanks so much for the DVD’s – these are great for Phoebe (and us!!). Thanks for all your good well wishes and prayers; we truly appreciate all of your love and support. To our friends Audrey, Paul, Darren and Catherine and Audrey’s Dad, Tom; thanks so much for the cuddly reindeer for Phoebe and all your prayers. Bless you guys. Another special thank you goes to Tom for including Phoebe on your prayer list at church too. It was lovely to see all of you on your last visit to Stoke and we look forward to our next trip to Waterford. It's a lovely place guys so get yourselves over there!!!
Today I managed to get out for my power walk around the hospital; Margaret came with me and updated me on everything at home. I just took really deep breaths, it was really refreshing, and I will really make time to do this everyday!!
Remember me telling you about the adhesive tape removal pads yesterday? Well...Ade surpassed himself today; he made a few calls and eventually spoke to the UK Distributor to ask them about the possibility of sourcing some of the removal pads as they don’t have any in hospital. Well, the good news is they have very kindly donated 1,000 to be delivered to the ward by courier. Fantastic work there Ade, well done Hun.
[Aw, ta chuck! On looking further at their site I thought that these would be brilliant right now too. - Ade]
Now, one of the things I forgot to tell you about was the lovely visit we had here from Santa. He called early to see all of the children in hospital and brought lots of nice presents. Phoebe was a little scared on seeing him when he looked through the window, bless her. However, she did like the present we opened…it was a jigsaw!!
Our experience of hospital life here in Manchester this time around has been extremely positive and you may remember me saying that if we needed to be in hospital then probably the nicest time would actually be Christmas; there just seems to be a happier vibe during the festive season. The nurses have let us know that we will be having some famous faces popping in from time to time. Today, we had a lovely visit from Boxer, Joe Egan (bizarrely, we have a good friend called Jo Egan too in Margate!!! – Hi Jo and Cliff!!). Joe and his wife Ruth were really lovely bless them; they very kindly brought gifts for all of the children on the unit. We were introduced to Charmaine Wilkinson who is the Appeals Director of the Five Stars Scanner Appeal. This is dedicated to raising £1 Million to purchase a new MRI scanner for the Royal Manchester Children’s Hospital. Joe and a few more celebrities such as Max Beesley, Ryan Giggs and others are lending their support. Having already raised £750,000, they need to raise just £250,000 more by June of next year. I’m sure they will do it, so if you fancy donating for a great cause go to their website at www.fivestarsappeal.co.uk
Phoebe seems to have settled more since we have increased the morphine and she looks very comfortable.
Thanks again for the questions and comments on the blog, it's great reading them and is proving very entertaining…
Thanks again for the questions and comments on the blog, it's great reading them and is proving very entertaining…
Hmmm, interesting prediction Sarah!!!
Nice to hear you have ordered the book Lissa, let me know what you think!!!
Hi Parsnip…Ok….The IV lines and Phoebe’s Hickman line are one and the same. The IV lines attach to the Hickman line which is located just to the left of Phoebe’s chest and this goes directly into one of her main veins. Phoebs has not been fitted with an NG tube yet but probably will have to be at some point. It will be temporary and will enter via her nose and run into her stomach. This will enable her to be fed liquid foods and oral medicines.
Freakily..about the parsnip recipes…I knew that was coming. I only said at lunch, "they will all start swopping parsnip recipes now", and low and behold…there it was…or it could have been a Parsnip Appreciation Society….there you go Denise, that could be the name of your blog!!!
[I like the sound of this recipe - Ade]
Hi Ange, thanks for the tip on 'Metanium'. If I remember correctly we used this for Eleanor so we will ask about it tomorrow xxxx Good to hear from you guys, hope all is well.
Yes Bert, thanks for your comments, glad you appreciate us multi-taskers!! [Nice one Bert! ;o) - Ade]
Angela Blenkinship is our family counsellor here at Royal Manchester and we have always been contact since we were here with Eleanor. We managed to catch up with Angela when we first arrived but unfortunately, on an icy morning, she slipped and has broken her leg. We were so sorry to hear your news Angela and we send all our wishes to you for a speedy recovery. We ask all our bloggers to send healing thoughts your way…we miss you but we're so glad that you have joined us on the Blog.
Manju, thanks for your lovely thoughts. Funnily enough when we were shaving Phoebe’s hair I was thinking at the time about the deeper significance; us girls are so in tune!!
Well done Helen, you got here in the end!!! And the comments to yourself did give me a giggle!!
Thank you to everyone who reads the updates; there is a wonderful ripple effect occurring don’t you think? Each day we look at Phoebe and have proof that she is receiving amazing care and all the good vibes from the prayers and positivity. We are very blessed.
For now dear friends, another day is done…a day closer to coming home.
Nice to hear you have ordered the book Lissa, let me know what you think!!!
Hi Parsnip…Ok….The IV lines and Phoebe’s Hickman line are one and the same. The IV lines attach to the Hickman line which is located just to the left of Phoebe’s chest and this goes directly into one of her main veins. Phoebs has not been fitted with an NG tube yet but probably will have to be at some point. It will be temporary and will enter via her nose and run into her stomach. This will enable her to be fed liquid foods and oral medicines.
Freakily..about the parsnip recipes…I knew that was coming. I only said at lunch, "they will all start swopping parsnip recipes now", and low and behold…there it was…or it could have been a Parsnip Appreciation Society….there you go Denise, that could be the name of your blog!!!
[I like the sound of this recipe - Ade]
Hi Ange, thanks for the tip on 'Metanium'. If I remember correctly we used this for Eleanor so we will ask about it tomorrow xxxx Good to hear from you guys, hope all is well.
Yes Bert, thanks for your comments, glad you appreciate us multi-taskers!! [Nice one Bert! ;o) - Ade]
Angela Blenkinship is our family counsellor here at Royal Manchester and we have always been contact since we were here with Eleanor. We managed to catch up with Angela when we first arrived but unfortunately, on an icy morning, she slipped and has broken her leg. We were so sorry to hear your news Angela and we send all our wishes to you for a speedy recovery. We ask all our bloggers to send healing thoughts your way…we miss you but we're so glad that you have joined us on the Blog.
Manju, thanks for your lovely thoughts. Funnily enough when we were shaving Phoebe’s hair I was thinking at the time about the deeper significance; us girls are so in tune!!
Well done Helen, you got here in the end!!! And the comments to yourself did give me a giggle!!
Thank you to everyone who reads the updates; there is a wonderful ripple effect occurring don’t you think? Each day we look at Phoebe and have proof that she is receiving amazing care and all the good vibes from the prayers and positivity. We are very blessed.
For now dear friends, another day is done…a day closer to coming home.
‘We not only live among men, but there are airy hosts, blessed spectators, sympathetic lookers-on, that see and know and appreciate our thoughts and feelings and acts.’
Henry Ward Beecher
With love xxxx
12 comments:
Hi Lynn, Ade and Phoebe,
Sounds like you had somewhat of a good day. Phoebe is just handling all of this so beautifully, what a girl she is. I hope you put a photo of her up with one of her hats, I bet she will look great.
Lynn I am glad you got out today, it must have felt good and re-energized you. Do you have an estimated time as to when you can go home?
I wasn't going to mention anything more about Parsnips, but since you brought it up...Estelle thanks for the recipe, I will try that. Anyway I happen to be educating myself (via google) and typed in Photo of a parsnip, just so I have an idea of what one looks like. Well 3
pictures come up, 2 being what looked like very pale carrots (not so bad) and a third photo of a foot, a big old nasty foot with something growing on it (God only knows what it was, but I would have that thing lanced off in a minute if I had to do it myself)and appearently you can get this from being around wild parsnips, which I hope is not the same thing, anyhow it got me thinking of Manju and his obvious dislike for the parsnip..Manju I can only conclude that your intense hatred of the parsnip can only be attributed to perhaps a mix up in the kitchen? Yes Americans can be quite gross...
Goodnight to you all and I hope Phoebe has a great day tomorrow.
Love Lissa
Wow, big round of applause to Ade for sourcing those removal pads! And getting so many donated too - that's incredible. Poor Phoebe and her pain....Andy's had morphine, he says it was good stuff, the best he's ever felt, so hope it helps with her too. That's interesting about how the quantities of her IV feed changes according to her blood results.
Great to hear of Santa's visit! And that boxer dude, how nice of them. Make sure you've got your slap on at all times for when famous people drop by Lynn. Your family sound fantastic, they really do Glad to hear Winnie is doing better:) Hope Angela gets better soon, ice is the bain of my life.
Funny about you predicting the parsnip recipes! Great name for my blog BTW! It was so hilarious talking to Helen again today about her attempts to join us here! That chick has the most infectious laugh ever, don't you think?! Hope you get to hear it soon!
Manju - that photo is only 2 years oldish (I think) and I hope I looked better than that in the 80's! It was the only one I had of me on my 'puter. I will take a more recent one and put that up. Altho remember, you haven't seen me in 3 years;
I look just like Angelina Jolie now.
Hope you have another good day tomorrow guys and that you get plenty of soft melty smiles from our little hero:)
Loads of love
DenXXXXXXXXXXX
ROFLMAO LISSA!!! I have never heard of that wild parsnip manky foot thing!!! And me a parsnip expert! And Manju doesn't go into kitchens very often except to make tea....!! Kidding Manj....
I meant to say Manju, that rhubarb is another favourite food of mine! It's prolly above parsnips! I NEVER knew that about you! Mind you, I can't see either food featuring too highly on any Indian menu!!
Well I just finished posting that comment about Indian food when I saw Ade has inserted a link to a curried parsnip pie recipe!! Sounds amazing - I might even have that for my Christmas dinner! Andy is looking at it now (he's the chef), sounds so good! Nice one Ade!!
One other question what time do you both go to bed? You must be up very late every night!
Good morning to you all!
Just wanted to say a fabulous 'welldone' to you on the journey so far - it truly is incredible!
Sending much love and thoughts your way and a great big kiss from the clan for Phoebe
Jude, West, Maddie, Alex and Chlo-Jo
xxxxxxxxxx
Hiya. I was looking through the pictures this morning with Amelia (which she loved and had lots of questions which was really nice) and noticed an orb by the lady who came to play the keyboard - 8th december post. What a wonderful lady.
I do hope that the pain has gone from phoebe today, she is so brave. I have posted your blog on the little Hearts Matter website (for families with children who have heart defects). Many of the well wishers will have their own little angels. Heres one...
From Jo
Hi Rachel
That is a lovely blog and such an inspirational little girl.
I have been thinking about her, in fact tonight I was just saying to friends how I would love to know how she was doing and how I wished she was doing well, and how for a little girl and family who I don't know are so much in my thoughts and prayers.
Please pass on our good vibes, our best thoughts and wishes, and love that she gets well.
Shes incredibly brave and her Mum and Dad seem just as inspirational.
xxx
Joelle and Angel Beth
Make sure you take yourself for some air and breath!!!
Always in our thoughts.
Love Rachel,the brood
and Angel Sam (hlhs)
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi Lynn, Ade and Phoebe!
You make such great bloggers - I love the way Ade pops in with his science made easy stuff!!
Looking forward to seeing you all at the weekend, Lynn we will go powerwalking together as I need the excercise! Let me know if we can bring anything up for you!
Now my little eyes lit up when I saw the name Max Beesley in your log....not that I am looking to exchange Gary in the slightest but if Max is on the agenda then I'm sure you would share that with all us ladies and I could throw a sickie!!!!!!
Take care of each other and I shall see you soonxxxxxx
Hi to Lynne and Adrian from Helen and Mike Lloyd. I am using Loey's identity to do this!!! I am such a technophobe. I was really interested to see Phoebe's progress and wanted you to know that we are thinking about all of you at this time. Christmas sounds like it will be exciting in hospital. I do hope that Santa is good to you all.
Hello Lynn, Adrian and Phoebe
I never cease to be amazed by you - perhaps the Trust could employ Adrian as some kind of troubleshooter! I don't think that the children would ever want for anything with his powers of persuasion. Well done! I was sorry to read that Phoebe's pain is increasing - I know that must be hard for you two to see but she is such a star!
Also glad to read that Lynn is managing to get some fresh air(if there is such a thing in Manchester!) and I hope that Ledbrook House is still comfortable for Adrian.
I know that there will be lots more celebs dropping in during the next few days so I hope that brightens your days a little more.
Much love to you and your fantastic families and big kisses to Phoebe xxx
PsThankyou for the good wishes etc to me. I am gong for an MR scan on Friday so hopefully things will be a little clearer then
Oh my goodness you are all so brave. It's wonderful that the morphine is doing its job and Phoebe appears more settled. Do you know specifically what causes her pain - is it the Mucositis?
Can I just say a big thanks to Ade for explaining how the stem cells get in there and do their job - the dress code analagy is great.
I must be old cos I also remember crackerjack - no cabbages I hope!
I kept Austin's NG Tube, he kept pulling his out little monkey.
Also well done on sourcing the adhesive remover pads. Hey guys don't be afraid to delegate if there is something you need, let us know and we can try to find it for you.
Sorry my message is a bit garbled today - I've just got to nip off for Harris' (our eldest's carol concert). We'll dedicate all our prayers to Phoebe and the rest of her gorgeous family.
Look forward to your next update (you must be shattered but it keeps us all going so big thanks!)
Loads a love guys
Sarah
XXXXX
your becoming quite famous.. everyone i see asks how you all are.. stay strong
much love becky, mark and molly x x x
Good evening friends,
Am i getting obsessed? I've just got in from work, straight on to the laptop, coat still on, now, where did i leave the car keys?
Lisa - I'm with you on the Max issue . . . . meet you at New Street as soon as we get the call?!!!!
Lissa and Parsnip - apparently cumin goes very well with parsnips.
Parsnip - here's a good Christmas Rhubarb recipe for you: http://www.bbc.co.uk/food/recipes/database/christmascrumblewith_87717.shtml
Lynn- so good to hear your voice again today and to hear Phoebe saying hi too! The HR Guys at the Women's all say hello - they refuse to make my Earl Grey until I have provided daily updates – can’t get the staff these days!
Ade - new question . . . Phoebe is having regular blood tests – What are the medical team testing for each time? What are the key indicators that will tell them that the transplant has been successful? (OMG – I know I’m too absorbed in my work when I start saying ‘key indicators’)
Take care one and all,
Love to Phoebe,
Estelle
xxxx
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