Good Evening Bloggers,
Happy New Year Everyone!! Thanks for joining us on the first blog of 2009.
We hope you are all well and resting now after the last few weeks of festivities.
The first morning of the New Year was so special. Phoebe awoke shouting "tea, tea Mummy", it was quite early and I wasn’t quite sure at first if I was hearing her correctly. Wishing Phoebe a good morning and a Happy New Year, I suddenly remembered that I could pick her up and have a cuddle until it was time to get up..aah it was just divine. Phoebe dozed for a while but then sat up and felt really thirsty; she had a really good drink and then wanted to play with all her toys.
We had a lovely breakfast this morning and Phoebe ate well again which is one of the significant steps in moving forward ready to be discharged. We didn’t receive the oral meds. until after 10am and they are a lot for her to take. Well, it didn’t go down very well this morning and we felt devastated when she was extremely sick and upset, having eaten so well…but…it’s just a learning curve and we will crack it to make it easier. The tactics so far are not actually saying the word "medicines" as that has almost acted like a trigger to Phoebe’s gag reflex!! Now we spell it out between ourselves so as not to alert Phoebe, get ourselves ready and before eating any meal, pop it in quickly before she has wondered what has happened. We adopted this approach a few times today, sometimes it works but when we give her the Penicillin….it doesn’t (yuk)!!
The morning flew by and many of us were still walking with the lethargic round shoulders by lunch time, desperate for an energy boost as we had a late night...of course. It was all in good reason!! We really enjoyed our New Year's Eve with Berge and Estelle. Ade and I were talking after about how thoughtful of them to want to join us here for their New Year…and all the effort with the food. We truly enjoyed ourselves guys, so glad you came over.
We have been concentrating on Phoebe’s fluids as advised by Maged this morning as her results showed yesterday that she needs to have more of them. Overall she had had 460mls or so today, which is much better. We also talked with him regarding whether Phoebe should have an NG tube fitted or not as it can be so stressful for us all to give her the 11 (yes - eleven!) doses she needs to take orally throughout the day without one. He gave us the pros and the cons and we are so pleased to have Maged with us as his care and advice have been second to none and incredibly reassuring. So long as we keep encouraging Phoebe to drink well and take her meds., things should be looking rosy and ready for home this weekend....can you believe it?!!
Just when we were flagging….here they were, the troops arrived, thank the Lord for our blessings!! Having them here has been such an immense help and I was talking with them all today and started to feel very emotional when I think of all the love, support, time, oh and of course, wonderful food they bring with them each day. Not wanting to disappoint us they brought a large buffet for lunch, very tasty sandwiches and of course helping us survive care of Oatcakes!! Mum and Dad so kindly cooked us some steak with mushrooms for dinner, it was delicious. Thanks for looking after us all so well and making the trip to see us each day. We do so appreciate you all. xxx
Phoebe seemed quite tired for the most part today,
even though she had had a nap mid-morning. After lunch she had a wander around the ward (above) as we want to strengthen her legs again. After a while, she flagged a little and just relaxed on Mum’s knee (right). She eventually drifted off to sleep and awoke just before the troops were leaving. Bless her, she started to cry and was a little upset but we distracted her with our new tactics!!
Later this afternoon, we needed to give a few more of her meds. and some of these went swimmingly but unfortunately the Penicillin, which seems to be the main culprit, reared its head again and made Phoebe really sick. This was taken with her Ciclosporin and unfortunately this came back too!! Never mind, another day!! "Keep persevering"..we are reminded on a daily basis!!
Happy New Year Everyone!! Thanks for joining us on the first blog of 2009.
We hope you are all well and resting now after the last few weeks of festivities.
The first morning of the New Year was so special. Phoebe awoke shouting "tea, tea Mummy", it was quite early and I wasn’t quite sure at first if I was hearing her correctly. Wishing Phoebe a good morning and a Happy New Year, I suddenly remembered that I could pick her up and have a cuddle until it was time to get up..aah it was just divine. Phoebe dozed for a while but then sat up and felt really thirsty; she had a really good drink and then wanted to play with all her toys.
We had a lovely breakfast this morning and Phoebe ate well again which is one of the significant steps in moving forward ready to be discharged. We didn’t receive the oral meds. until after 10am and they are a lot for her to take. Well, it didn’t go down very well this morning and we felt devastated when she was extremely sick and upset, having eaten so well…but…it’s just a learning curve and we will crack it to make it easier. The tactics so far are not actually saying the word "medicines" as that has almost acted like a trigger to Phoebe’s gag reflex!! Now we spell it out between ourselves so as not to alert Phoebe, get ourselves ready and before eating any meal, pop it in quickly before she has wondered what has happened. We adopted this approach a few times today, sometimes it works but when we give her the Penicillin….it doesn’t (yuk)!!
The morning flew by and many of us were still walking with the lethargic round shoulders by lunch time, desperate for an energy boost as we had a late night...of course. It was all in good reason!! We really enjoyed our New Year's Eve with Berge and Estelle. Ade and I were talking after about how thoughtful of them to want to join us here for their New Year…and all the effort with the food. We truly enjoyed ourselves guys, so glad you came over.
We have been concentrating on Phoebe’s fluids as advised by Maged this morning as her results showed yesterday that she needs to have more of them. Overall she had had 460mls or so today, which is much better. We also talked with him regarding whether Phoebe should have an NG tube fitted or not as it can be so stressful for us all to give her the 11 (yes - eleven!) doses she needs to take orally throughout the day without one. He gave us the pros and the cons and we are so pleased to have Maged with us as his care and advice have been second to none and incredibly reassuring. So long as we keep encouraging Phoebe to drink well and take her meds., things should be looking rosy and ready for home this weekend....can you believe it?!!
Just when we were flagging….here they were, the troops arrived, thank the Lord for our blessings!! Having them here has been such an immense help and I was talking with them all today and started to feel very emotional when I think of all the love, support, time, oh and of course, wonderful food they bring with them each day. Not wanting to disappoint us they brought a large buffet for lunch, very tasty sandwiches and of course helping us survive care of Oatcakes!! Mum and Dad so kindly cooked us some steak with mushrooms for dinner, it was delicious. Thanks for looking after us all so well and making the trip to see us each day. We do so appreciate you all. xxxPhoebe seemed quite tired for the most part today,
even though she had had a nap mid-morning. After lunch she had a wander around the ward (above) as we want to strengthen her legs again. After a while, she flagged a little and just relaxed on Mum’s knee (right). She eventually drifted off to sleep and awoke just before the troops were leaving. Bless her, she started to cry and was a little upset but we distracted her with our new tactics!!Later this afternoon, we needed to give a few more of her meds. and some of these went swimmingly but unfortunately the Penicillin, which seems to be the main culprit, reared its head again and made Phoebe really sick. This was taken with her Ciclosporin and unfortunately this came back too!! Never mind, another day!! "Keep persevering"..we are reminded on a daily basis!!
More of the nursing team - Charlotte, Rachel & Kate
Continuing Phase III – The Journey Home…..woohoo!!!
For now Dear Friends….
'Your New Year begins with hopes and dreams, the best of intentions, and the ruffle of wings.'Rest easy, much love,
Lynn, Ade, Phoebe and Spirit Eleanor xxx
5 comments:
Lynn, Ade, Phoebe and Spirit Eleanor,
I bet it will feel good to get home tomorrow, I can imagine you will feel somewhat apprehensive being use to having all the nurses right there, but I have every confidence that everything will be just fine. Looking forward to hearing how the trip home goes.
Have a good night
Love Lissa
Hello all!!
Just be careful with the spelling trick - Phoebe is smart enough to work that out pretty darn quick!! That's sounds miserable getting the meds down her that make her sick - why those particular antibiotics and not the other meds? Are they perhaps harder on her already irritated stomach lining? As well as a little bit of a mental trigger? Can they flavour them with something maybe? And what happens when she takes them and throws them up? Do you give them to her another way? I know with Patrick's seizure meds we could give another dose if it was thrown up within 10 mins or so...after that it was prolly absorbed (the med was powdery sprinkles on soft food like applesauce).
I just realized that I asked 6 questions in a row!!! Errrrrr..... can you say HIGH MAINTENANCE???!!!
So good to hear you can get a proper cuddle with her guys, I bet that means the world:) It was great to see the photos of her walking in the ward. When I see that little body, it's just a reminder that she is small and young to be going through this and she is such an incredible trooper, so brave. She is an amazing little girl.
Saw and spoke with Manju and Sheena through the wonders of Skype on NYE! That was a laugh! Manju, unfamiliar with technology (on any level) kept leaning in to the computer screen, shouting and talking very slow so I could hear her.....bless. It was good to see some fellow bloggers, esp two of my oldest and funniest friends!
Lissa - I'm here, thank you for asking! I emailed Lynn the other day instead of posting and then yesterday's post I didn't see till this morning (because we celebrated NYE at a neighbors house.......that was a late one!!). I was like you - I had to compose myself a little after Lynn's update. Tried to find the right words, any words really, they weren't coming as easily as normal (I was really tired!! I'm never short on words as you might have seen by now) and then next chance I had to be on here was now!
Well that's me signing out for tonight! Happy New Year to all on the blog and here's hoping that 2009 is a healthy, calm year for all of us......
Tons of love
DenXXXXXXXXXXXXXXXXXXXX
happy new year....
poor pheobs all those meds :( molly has trouble taking calpol so goodness knows what she'd make of 11 lots :(
fingers crossed for a smooth journey home i bet your excited beneith the apprehension.
lots of love and luck and many prayers as always
becky, mark and molly x x x
Lynn, Ade & Phoebe, Happy New Year to all of you...Well we are home from our trip to the Lakes and back to normality!! (so rubbish!!!) I couldnt believe what i was reading when i read that you are getting ready for home at the weekend ..that is amazing, will Phoebe have to go to the hospital here daily, weekly, monthly and how long will she have all her medication for, will you have to give it to her at home??? you all must be very excited, if Phoebe is anything like my little one she'll be asking to watch Peppa Pig as soon as she on the drive!! (she cant go a day without Peppa or Diego!!!) Have a safe journey home and look forward to seeing you all in the The Tollgate very soon xxx
Hi guys,
Happy New Year - 2009 is going to be a great one for you all. Just to wish you well coming home, how exciting it will be. Hope Phoebe settles well after being in hospital in her own home. Love and best wishes for a continued recovery, you are all doing so fantastic. Keep up the blog, it is a source of comfort for us all to know how you are doing.
love Deb and familyxxxx
Post a Comment