Transplant Day +32 - A little help required......

Good Evening Bloggers

We trust all is well with all our bloggers out there and welcome to another update on Phoebe’s blog from Royal Manchester Children’s Hospital. Welcome to all the new bloggers joining us on this journey today too!

Phoebe awoke in a lovely mood this morning, chattering to herself in bed and I heard her calling me. When I went into her room she actually asked for some porridge and some tea; it’s lovely to hear her talking as she has such a beautiful sweet voice and now she is actually making her own choices in what to eat too!!

We set off in good time this morning to arrive here in Manchester for 10am. The traffic was fairly heavy as you can imagine first thing on a Monday morning and misty, wet weather kept us a steady 50mph all the way. Phoebe had her regular Monday morning bloods taken and the results were showing her Hb a little low; we’re not sure if a transfusion is required as yet and we'll re-assess this after her regular bloods tomorroww.

As Phoebe enjoyed her breakfast we were hopeful that her appetite would continue throughout the day. It was midday before we could access the cubicle but this gave Phoebe some time to have a little freedom in the family room beforehand. Rob decided that it would be better if Phoebe was isolated until it is confirmed that her system is completely clear of the Norovirus. A mild rash has started to appear on the back of her shoulders, around her bum and stomach. Rob is not certain enough to make a diagnosis at present but will keep an eye on this over the next few days for any changes.

We have settled into our cubicle, a different one again from our last visits, it's quite a large room with plenty of windows which is really important to us. There is plenty of space and its very comfortable.

Nicola our Nutritional Specialist visited us today and we discussed Phoebe’s appetite and diet since we last saw her on Thursday and decided that we should start on a regular line feed of 40mls every 3 hours. Nicola then explained about the different types of supplement. We will try regular doses of our original feed but if her stomach cannot tolerate this they are able to feed Phoebe with a supplement which is already partially broken down. Our first dose was 6pm and she seemed to be ok, the next dose was 9pm. Ade has taken the time to slowly filter the supplement drink through the syringe each time but unfortunately Phoebe was quite sick at 9.30pm.

Throughout the day Phoebe ate a few teaspoons of mashed potato and gravy, found the goodies stash and particularly enjoyed snacking on some Wotsits…I am now refining my art of persuasion and rewards with Phoebs during meal times and this is successful to a certain degree!! With Phoebs being so strong minded it's not always that easy but a good distraction always helps. She has enjoyed her daily cuppas and now that she has remembered the novelty of how to drink from a straw we can try some more flavoured drinks.

Early evening Phoebe became tired rather quickly and as I type here at 11.10pm, she is awake after being very sick. I have managed to give her one of the really unpleasant tasting medicines [This was Ciclosporin that cannot be put down the NG tube as it is so thick and sticky - Ade] and luckily she had it OK. She must have had a thirst as she asked for water, followed by a few sips of tea which always goes down well.

Thanks Parsnip for your question regarding the Penicillin. We have discussed this in the past with Rob; giving regular doses of Penicillin to BMT patients was only recently introduced here at Manchester, although this is now generalised protocol across the European Union.

We will have a chat with the specialists tomorrow to see what they advise regarding the feeds and will update you all tomorrow.

We look forward to the troops coming tomorrow and we have the full quota as Geoff will be driving. Mum and Dad have kindly been over to the house today to help us by giving it the once over! Having Phoebe at home means the house needs to be damp dusted every other day, then vacuumed and mopped each day. Once we return home after our final discharge, we will find a routine to keep on top of it all.

Thanks for all the texts, messages, comments and e-mails we have received along with all the wonderful, positive comments about the blog. We have such amazing supportive friends, you are all so kind, bless you xxx

For now folks, rest easy….

‘Bungling, blundering, feeling so alone, we struggle through some days only to find when the fog has lifted we are where we should be – in the company of angels.’

With love,

Lynn, Ade, Phoebe and Spirit Eleanor xxx