Transplant Day +35 - The Road to Recovery

Good Evening Dear Bloggers,

Thank you for joining us, we are all ok and hope this posting finds you all well.

After a restful sleep, Phoebe and I awoke much more recharged and ready to start another day. It's important to always begin with good energy in the air, it keeps our spirits high.....must be the ripples from you guys!!!

To wake first thing in the morning, just lying in bed and listening to Phoebe chattering away has to be one of my all time favourite things. She is so entertaining and you can hear how her language is ever-increasing by repeating everything we talk about and her singing is a delight. Ok…now..on a funny note, this might sound bizarre but I’ll tell you about one of my other favourite, slightly weird pleasures…bear with me. Over the years we discover our real likes and dislikes and…well….starched sheets have to be a real favourite of mine, especially when we stay in hotels. Obviously staying in hospital has its draw backs but having clean starched sheets has made it just a little more pleasurable!!! And to add to that (It’s mad I’m telling you this and I’m laughing to myself as I type this but what the heck….) we initially brought our own towels but after a while we opted to use the hospital ones to make it easier. Using these coarse, starched towels feels like you are having a full body exfoliation every day, fabulous! I have never felt so clean..oh geez I’ve told you now….hey ho!!

Phoebe is a constant joy and has been a pleasure to look after throughout this time; she has made it easy for us by being so accepting of everything that is brought to her. Saying that…today she wasn’t too keen on having the NG tube inserted again. Phoebe had eaten a good breakfast and is drinking plenty, spending time with Gwen, Nan and Geoff today. We could tell that Phoebs wasn’t feeling well. In fact, she actually said that she was feeling sick and she tried to manage it for quite a while but it just had to come out and unfortunately I was all fingers and thumbs and couldn’t quite reach around her to hold the NG tube in whilst she was being sick. Within a few seconds of Phoebe recovering, she was full of energy and completely different in her mood, wanting to play; it was extraordinary to see the instant change.

The folks arrived earlier today as Geoff had to head back to Stoke a little earlier. It was a surprise for Phoebe when they walked in unexpectedly early and especially as they had collected her little push-a-long car from home, she was so pleased to see it. Phoebe’s lines were attached to the machine whilst she was having some IV steroids and it was a little challenge to push her along whilst watching that the lines didn’t go under the stand of the machine or wheels of the car. Up and down, up and down then turning her around, it always brings a laugh and like I said before its like being on the Krypton factor!!! Throughout Phoebe’s therapy, whatever she is doing, the nurses also work around her when taking her blood pressure, temperature and checking oxygen levels so as not be too invasive to her day.

Even though we are in hospital and the nurses are here, Ade and I are also making our own notes on Phoebs observations and recording when we have given her meds. To make this a little easier, Ade has designed a really helpful sheet that we use to record our obs. and general notes throughout the day, take a look (above)….

Phoebe hasn’t been on top form today but we have to expect this and remember not to put too much pressure on her. She hasn’t had a great appetite but we also continue to feed her through the NG tubeand and this relieves our concerns. She is currently tolerating around 60mls every 4 hours. We are unsure as to why Phoebe was sick today as she hadn’t been sick in the last 24 hours or so but we need to be mindful that her stomach is still quite delicate. Phoebs is still drinking plenty and her weight has increased which is just so encouraging.

On his ward round, Rob allayed any concerns regarding the GVHD rash. After its initial presentation it has not worsened and we can expect this to improve with the steroid treatment within 7 days. He has explained that the GVHD may be intermittent but fortunately doesn’t appear to bother her at all. Many of the treatments Phoebe has have side effects; Ciclosporin also promotes hair growth, so as you can see from last nights post Phoebe's hair is starting to grow back beautiful and blond again!!!

We may be able to come home for weekend leave but will see how Phoebs is over the next 24 hours; we’re not focusing on it too much but just taking one day at a time. We are happy to stay for however long it takes to get Phoebs well. However, it will be nice to catch up with you all soon.

To everyone sending us wonderful energy, prayers, comments on the blog, texts, thank you all so much as we truly appreciate everyone thinking about us and do so believe you are all carrying us along, keeping our spirits high…bless you all xxx.

Well, tonight I have some special birthday wishes for my dear friend Theresa’s son; Nathan is 16 today!!! Happy Birthday Nathan, hope you have enjoyed your day hun xxx.

Also to my dear friend Helen Latham (née Whittaker), Happy Birthday hun, hope you had a wonderful day and dinner out with the girls tonight. Sorry that I couldn’t make it but I look forward to going out with you and all the girls from Circle Tots real soon. We miss you all so much; Phoebs and I are with you all in spirit!!!

Dedicating this to you Helen….a truly wonderful, warm, funny, incredibly caring and generous dear friend….

‘Throughout history angels have been our direct connection to heaven. There seems to be no protocol too fine or too unworthy for heaven’s angels to touch down and offer their guiding light.’

Rest easy peeps…

Much love,

Lynn, Ade, Phoebe and Spirit Eleanor xxx