Transplant Day +8 - The Road to Recovery

Fellow Bloggers and Little Bloggeroonies….welcome!!

Thanks for joining us again for another day in the life of
Miss Phoebe Oldfield, who as I start tonight’s blog is meant to be lying down in her cot and snoozing away…but instead she's playing hide and seek with cheeky monkey, it’s so hard to keep a straight face!!!

Today has been relatively quiet and relaxed. This morning started in much the same way; Phoebe took a little time to gather herself and she looked dreamy, her eyes looking particularly beautiful. Phoebs and I stay in the room together and over the last few nights I have slept with the curtains open so that she can fall asleep whilst looking out to the moon and stars, even though it has been a little cloudy of late. Although time moves fast it feels like ages since we have taken Phoebe over to the window and talked about things we see outside. As she has so many lines attached to different machines it would be too difficult to keep moving around.

We flowed through the morning at a nice, steady pace. One of my tasks each day is to change Phoebe’s bed and my camp bed, sort the daily washing, etc. We have a really nice lady called Sunann (pictured with me above) who comes in each morning and cleans our room for us. Su is really friendly and Phoebe always greets her with a great smile. I asked her if she would have her photo taken for the blog…we really laughed after…as you can see I am slightly more enthusiastic about taking the pic than Su appears!! Ha ha!! Su is great and she gives us 15 minutes notice before she is due to come to our cubicle so I help her by taking everything off the shelves for damp dusting and clear everything off the floor. Phoebe loves this time with her as we all just go about our business whilst she makes us a cup of tea with her new toy tea set!!!

Well, this morning gave us a laugh. Standing by Phoebe’s cot I looked outside and wondered what time the troops were landing..and bizarrely, there was the tip of my mum’s hand waving. They had parked in a space opposite our room and as we are on the first floor just above it was great to see them. We started waving like we were embarking on a gigantic cruise liner and we all started laughing, it looked so daft!!!

Phoebe was so pleased to see her Nans and Grandad today. Although she is hooked up to the machines, her sense of fun is always present and it's nice for them all to have such concentrated play time together. At home it's sometimes difficult to find the time to just stop and play for a while when there is so much to be getting on with. Even in the face of the situation here we try look for our blessings, which surround us constantly, and we strive with Phoebe’s courage to get through another day.

Phoebe hasn’t eaten too much but did find some room for a couple of grapes, some sweetcorn and of course her daily cuppa!! She has been much better today when we have offered food to her as she has looked a little more interested before saying ‘No Mummy!' Her pain management has been steady although we have increased her morphine a little as she was telling us that her bum felt sore, my little pidge!! After this was done she seemed much happier and could sit easier.

Shiva popped in today (below) and was really pleased with Phoebe's progress. She has taken on quite a lot of fluids and consequently appeared slightly puffy on her eyelids with her body a little more swollen than normal. This didn't worry Shiva as in time she will naturally filter the excess fluids out of her system and her body will return to normal. We noticed that, as her face has a filled out a little, she looks so much like Eleanor.

I know that Ade won’t mind me telling you that we had a tough start to the afternoon as, unfortunately, Phoebe’s Hickman Line pulled a bit too much when he picked her up to pop her on Gwen’s knee. There are so many lines attached and one happened to sit under the stand of the machines and was out of Ade’s sight. Phoebe was upset as we had to redress her line site again; we calmed her down and she fell asleep but then awoke and was very teary when we cleaned the site with cold sterile water and dressings. Phoebe was fine but Ade was devastated as you can imagine; it’s just one of those things that happens when you have so many lines and lots of things to think about just to get Phoebe out of her cot and sit her on a chair!!

Even though we had a fairly relaxed day, chaos briefly ensued outside on the ward earlier in the morning. The nurses were tested to a great degree when one of the patients on the ward became very ill. We remembered those very worrying times and knew what they were all going through so I asked my angels to go over and help wherever they could and we prayed for the family. One of the operating theatre staff that we met when we were here with Eleanor was called to the ward. When he saw Adrian he made a point of speaking to him to ask why he was here again; he’s a lovely chap and just gives great hugs. He remembered us immediately which surprised us as it was 4 years ago that we last saw him. Back then he was fantastic with Eleanor in theatre and came up to check on her regularly. When we told him what happened with Eleanor after we returned to Stoke he was quite upset.

Due to the needs of the patient on the ward one of the consultants who attended was Grace; we recognised her as she too had previously looked after Eleanor. Ade and I were only asking yesterday if Grace was still at this hospital. She came into the cubicle, looked at us and said ‘still together, so strong’. She then took one look at Phoebe and her breath was taken as she saw the similarities to her big sister!! To hear a consultant, who must see hundreds of patients, say that she will never forget Eleanor was amazing. Grace said she could remember it like it was yesterday and when she thinks of her it makes her heart ache remembering what happened. It was very touching to hear that Eleanor and us as a family make that kind of impact.

We also had a visit earlier this week from Rachel, Eleanor’s specialist nurse from HDU (High Dependency Unit). [The High Dependency Unit provides specialist care for children requiring more observation, intervention or monitoring than can be safely provided on the general wards: it acts as a ‘step up' from the wards and a ‘step down' from PICU (Paediatric Intensive Care Unit) - Ade] . It was very overwhelming seeing her again for the first time since we were last here. Many of the staff only saw Eleanor when she was very ill and for them to come and see her sister, looking so similar and so well, must have been strange. It was emotional to meet up again and since we last saw Rachel she has had a baby girl and named her Ella; then that started me off!!! These people who come into our lives, they leave such an imprint on your journey and those times will seal your connection forever.

We understand that some of the blog maybe a little hard to read from time to time but remember, this is a journey with many twists and turns and some days are more emotional than others. This journey is very different for us and every day we have progress. It’s been very special to see these friends again, and we do very much class them as friends, even though they were in our lives at tough times. It’s been amazing to reunite with them.

Maged called in before he left for the day as he will be on annual leave next week. He is so pleased with Phoebe and started to talk about her blood counts and when we can expect to see any changes; possibly 12 to 13 days after transplant. Phoebe was happy and smiling for him and he liked the fact that she still uses her dummy, as that tells him that the mucositis isn’t too bad!! Phoebe always brings a smile to everyone who steps into the room and we are so proud of having such amazing daughters!!

Thanks for the call today Pam (Donna Louise), always good to hear from you and we look forward to your visit. Love to you Pam, Jane, Vicky and all the staff. xxx

I have to share some lovely news we heard today about one of our fellow patients on the ward, little Leyton next door. He's going home for the weekend and Hayley his mum is thrilled as we are. It’s fabulous news and just made our weekend!!!

I managed to have my walk and got some lovely fresh air in between the rain spells and yes, I really made an effort to put a spurt on!! May even start timing myself and do a second lap….steady now, did I just say that out loud?!!

Hi to all our new bloggers joining us each day!!

Thanks for all your comments and messages of support, it's really lovely reading them all and we’ll catch up more tomorrow as its been a fairly long one tonight.

Well guys it's Friday (my favourite day!!) and the weekend is here!! Hope each and every one of you has something nice planned, be it out and about or a cosy time at home! Enjoy your weekend and we look forward to catching you all tomorrow.

For Auntie Winnie, stay strong, love you xxx

‘Angels can’t see round the curves of life either; they just know that whatever is waiting, God will be there with it.’

With love xxx