Transplant Day +18 - The Beginning of Phase III - The Homeward Journey

Aaah, Hi there Fellow Bloggers,

Good Evening and welcome to our daily update on Phoebe’s progress. Wow, what a fantastic day.

We hope you have all had a good day; it’s been lovely and sunny ‘up north' with a beautiful crisp coolness in the air. Ade worries when I go out in my flip flops; he wonders if it's flip flops in Winter then what will I wear in the Summer?!! It’s great to feel the different temperatures as it’s really warm in the hospital and it gets particularly boiling when the sun warms the room.

Anyhow..Phoebe!! Well what a little star today, she has been incredible. Phew, I was very tired this morning as Phoebe was very unsettled around 3.30-4am with some sickness. Eventually I stayed up and Phoebe didn’t really go back to sleep either. We relaxed and had a cuppa together. Ade came across a little later and bless him always looks gutted for me if I have been awake in the night...and a little guilt maybe as he is lucky enough to get a good nights sleep!

Phoebe wasn’t particularly hungry for breakfast this morning, we did try and persevere but she knows her own mind. As Phoebs is continuing with her special IV supplements, it relieves us of any immediate concerns about her nutrition.

All the staff were back on the ward this morning and it was lovely to catch up with everyone and find out how they had spent the festivities. Being as it was Monday we needed to sort swabs etc. and it all went smoothly I’m very pleased to say. Maged and Nuti were back with us today; Maged is on call this week while Rob is away in London. Rob has a great team here and even phones in each day to find out about all of his patients' progress, he’s so committed as are all the staff here on the BMT Unit.

It was great to see Maged today and from the moment he and Nuti walked in, he had an agenda….to get us home at the weekend!!! How fantastic but at the same time, slightly scary!! We are surrounded here by the comfort of trained staff and we have to build our confidence in looking after Phoebs post transplant at home. With all the progress made and Phoebe being so well, Maged feels confident she is ready for the next stage…Phase III – The Homeward Journey.

Maged would like, over the next few days, for us to concentrate on Phoebe’s eating and drinking and has subsequently reduced the TPN (IV nutrition) supplement by 50%; this 50% reduction will continue each day. He doesn’t anticipate Phoebe needing an NG tube and he's very confident in her ability to accept the changes ahead. He is also confident that she will continue her steady yet wonderful progress which will enable us to move forward onto oral medications again, ready for discharge. I can’t actually believe I’m saying those words already. We were stunned, elated and apprehensive the same time.

As if the day couldn’t get any better, we had our friends John and Sarah visit us and it was great to catch up. Phoebe always has a lovely smile for John and I know he feels very proud to say that. Sarah and I had a great catch up whilst we sorted a cuppa, chatting about their plans for the new year. It just so happened at that time that the Troops arrived, arms laden down with bags and treats. Gwen made us a lovely pork dinner for tonight along with Bacon and Cheese sarnies for lunch. Mum and Dad kindly cooked a delicious joint of beef which Mum had sliced and placed it in gravy. Hot roast beef baps…your mouth watering yet? Well, obviously not for our Veggie bloggers amongst us, sorry!!

Even though we are more than capable of coping through this time with Phoebe together, it has been a real pleasure having all our folks with us each day and I know Phoebe feels just as secure with them, it's so reassuring for us too.

The day just continued with one surprise after the other, Rob and Jo Sproston popped over to see us, what could we say…and they brought some fresh pineapple, grapes and a crispy duck pancake meal; I mean…..how thoughtful are you guys, thank you so much. It was great just to see you and catch up on everything. The Sprostons have recently been on a fantastic trip to Lapland, taking Jack and Amy to see Father Christmas and although Amy wasn’t too keen on meeting him they had a lovely time and brought back a fabulous Reindeer for Phoebs, she loved it and kept ringing its bell!! Jo and Rob were so surprised and thrilled by Phoebe’s growth and progress since we last met up. It was fantastic to see you all and thanks so much for making the trip to see us and so kind of you to bring all the lovely gifts, again, we are rich with blessings galore. xxx

Throughout the day, Phoebe has been in good spirits but a little tired due to her early start. Unfortunately, she missed having lunch as she had just settled for a nap. Phoebe’s food has to be served and eaten as soon as possible as part of her clean diet advice and this means that we can't currently re-heat any food for her. Mum tried her with a couple of pieces of plum and melon which went down a treat. She is becoming quite choosy about her food but we bear in mind that her taste buds may not have completely recovered yet.

As Phoebe dozed off, everyone gathered their things and headed for home to avoid the traffic. Ade decided to take a trip back to Stoke as he needed to update on a few things at Tollgate and clean the fish tank at home. When Phoebe awoke, which was before she was ready, she was a little grumpy with me which I don’t mind of course. She has such a lot to cope with and today we began the slow conversion of her meds. back to oral from IV. Phoebe’s first dose was only half a teaspoon even though it appears to be more in a syringe (my term for this is ‘volume confusion’!). She did well and managed it even though she looked as though she may be sick, she did brilliant all considering.

It was nearing dinner time and as it was just the two of us I took the opportunity to give Phoebs some freedom on the play mat. Just sitting and playing with her was great as there isn’t always the time at home so it was lovely just to have this time together. Dinner arrived consisting of mash, sausages and green beans, yum! Well… Phoebe sat and really enjoyed it and fed herself, it was remarkable, the best yet, along with 60 mls of cooled boiled water…nothing could make me happier!! We sat having a lovely time and as I was chattering away I noticed that Phoebe had fallen asleep sitting up….aah I couldn’t believe it. Slowly and very gently I swept her up and popped her into bed. Without waking her, I managed to change her into her sleepsuit. Sheila, our nurse today, thought I did very well!!

Well its now 11.52pm and Phoebs happens to be wide awake, chattering away and talking about Nanas, Grandads and Gary coming tomorrow. Just txt’d Gary to tell him; he phoned her and said Bye-Byes on the phone. I don’t believe it, she has settled down with warm Rory the Lion!!! Charming!!!

Well guys, it's getting late. This was going to be a short one tonight but you know me!!!

‘We can often learn to recognize the sound of an angel’s voice when we listen to the little urge to do the right thing, to go the next mile.'

Take care and rest well.

With love,
Lynn, Ade, Phoebe and Spirit Eleanor xxx