Transpant Day +23 - Our Special Weekend at Home

Hello there Everyone,

Thanks for joining us here again on the blog, keeping up with Phoebe’s progress since the Transplant, can you believe it’s actually Day 23! Welcome to our new bloggers joining us this evening and a special thank you for all the welcome home messages from you all….yes its great to be back although a little surreal!!

Hope everyone is well and enjoying the weekend. We are having a great weekend just being at home. We forget the simple pleasures in life until you have them taken away, I will never forget the feeling of waking up this morning in our own bed, not actually too sure whether I was at home or dreaming it.

Today has been far better than expected; we have managed to relax a little even though this morning started slightly challenging with the first of the orals. Both Ade and I awoke feeling exhausted and we have put this down to dealing with the stress of giving the meds. It wouldn’t be a problem if it was a couple each day but it can be up to 16 doses and we just feel it’s too much stress for her to deal with, without understanding how important it is to take the meds. We are still in reservation about the NG tube, having lots of chats and asking advice from friends and family as much as possible. Eventually we will do what is we think is best for Phoebe.

At the moment Phoebe is taking, immunosuppressant’s and a range of anti-biotics which cover anti-fungal, anti-viral, and anti-bacterial. It is so important for her to take the meds that we have found it hard not to get stressed when it’s time. Phoebe was a little sick this morning but on the whole she improved massively as the day continued.

Phoebe hasn’t really had much of an appetite today but has been keeping her fluid intake relatively moderate. Phoebe may not have a great appetite everyday just like any other child but so far she has been fantastic considering and has surprisingly still show some interest in each meal time.

The troops arrived and it was so nice to have them all around, just being with us can help Phoebe to take her meds with the fine art of distraction. We adopted this principle throughout the day and early eve and I’m glad to say, the whole procedure started to become a little easier.
Overall Phoebe has been quite perky at times and after she has a good nap and she’s raring to go again.

We didn’t quite make it out for a walk around the block today but will try before we have to go back to Mancs, we will see how everything goes tomorrow goes.

As some of you have asked, we are currently on leave for the weekend and need to head back to Mancs on Monday am ready for the weekly round-up of blood tests, urine tests, weight etc.

Ade and I are fine and strive to get through each testing time with a good understanding of each other and our stress levels. So far, today has been better than yesterday and we will continue to try with oral meds. before we make any decisions about having an NG tube for Phoebe, or not.

We have had a lovely evening having the girls over for a take-away, they have always been there keeping my spirits up and making sure I still keep my sense of humour! As we have been chattering till late I will keep the blog fairly brief tonight so that we can get some good sleep.

We bid you all goodnight and see you again tomorrow.

‘Even though you may be unawares, Angels are working in the background to make sure that everything is as it should be, for our highest good’

Enjoying the comforts of home….catch you tomorrow folks.

Rest easy….with love
Lynn, Ade, Phoebe and Spirit Eleanor xxx