Transplant Day +16...Somewhat challenging!!!

Evening Everyone,

Welcome to this relaxing Sunday evening and hope this update finds you all well.

Well this evening has been rather relaxed and today we have probably had one of our most challenging days here in the hospital since arriving. It all began last night when Phoebe seemed really tired and fell into possibly the deepest sleep she has had since being here, come 8pm, our nurse came in with all her usual medications and there is a fair few to take. As you can imagine, it all became very distressing as she really didn't want to wake up and then have to take all the medicines some of which really do taste awful.

It is of course imperative that Phoebe takes these and again, it became necessary to consider the naso gastric tube. Having a nasal tube will help to give Phoebe a little respite from having all the stress of taking them as there are approximately 12 or so doses per day. By the time we had finished this challenging episode Phoebe was well awake and wanting to sing, read, watch a DVD...basically anything other than go back to sleep...Bless her, she finally gave in around 1.30am!

This morning, Phoebe didn't have much appetite and before long we received a delivery of medicines which obviously went down like a lead balloon!! On reflection, it appeared obvious from early on that she hasn't felt well today as she has wanted to be cuddled all day in her blanket which is unlike her. For her, the meer thought of having these meds just started a catalyst of tears and sickness that lasted until early afternoon. Mid morning, after many chats with Phoebe explaining why I had to be strong and give her my courage, it all became too much and I took the decision that Phoebe needed to rest from taking her meds orally and ask for a naso gastric tube to be fitted..can you imagine..I wasn't very popular at all!! ...But...it needed to be done.

Well, it lasted all of about three hours before the tube came out with a bout of sickness, we re-inserted it and again, this came out with a further episode. So took a little time to think, hmm why is this happening?? Sometimes, you just have to listen and not fight against something...so, I gave Phoebe time to decide if she wanted to take the medicines again instead of having the tube inserted. Our nurse Jane had to bring Phoebe the worst tasting medicines she needed and finally she took them with the understanding that we will insert the tube if she struggles again tomorrow.

Its incredibly difficult being so tough, I can take it when my gorgeous girl is cross with me but the tears..and I mean real tears flow...those are the hardest times.

During this afternoon, everything calmed down..thank goodness. Ade and I had a chat and came to the conclusion that everything that happened today needed to happen in order to bring a change ready to prepare ourselves for discharge home. We can go home with two very differing scenarios, to have the naso gastric tube fitted or continue on without it, either way the two options will no doubt bring very different experiences for us as we continue with Phoebe's recovery at home. Time will tell and tomorrow is another day...we shall see.

Due to today's events Ade and I are a little more tired than usual and as you guys follow us on this journey, we learn to take the good days and bad...one of the reasons why we take each day as it comes...so

Here's to a new day..we look forward to see what tomorrow brings and hopefully we'll be homeward bound!!

Thanks to Paul and Sheila for their lovely gift Phoebe received today, she was very taken with the jelly octopus and she enjoyed playing with the domino's today, bless you and hope you and the family are well.

Here is our chosen art work for today and this is from Jack Sproston, lovely neat colouring Jack!! Phoebe and her Granddad love this on Peppa Pig when all the family falls about laughing!!

See you tomorrow folks.. Rest easy
Much Love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx