Transplant Day +31 - The Road to Recovery

Good Evening Everyone,

Welcome to this relaxed Sunday evening, we hope you are all well!

Well, we are packed and ready for another trip to Manchester, would be better if it was the Maldives but wishful thinking there, mmm now….holidays are something we are definitely looking forward too!

Back to reality now…we have really enjoyed our time at home, truly appreciating all the comforts it brings before we head back for a short stay in the Royal Manchester Children’s Hospital. Both Ade and I feel happy and somewhat relieved to be returning to Manchester tomorrow, we both feel that even though we are managing Phoebe’s general care and all the medicines at home, it will be reassuring that Phoebe’s weight, diet and appetite will be closely monitored. Just being home since Thursday, we have been able to see that Phoebe has lost a little weight. There is only so long that this can go on for before we need some other intervention. Phoebe is keeping food down for a few hours but then tends to be sick; this in turn brings the NG tube up too. It’s a continuous pattern and the procedure of re-inserting the tube can be very uncomfortable for Phoebs. So we’ve had some time but now we need to get this sorted.

After talking with Rob, he has reassured us this will be his only concern with Phoebe at this time as all her bloods are producing superb results. It is a common aspect for children’s appetite to take a while to return to normal, the hospital will help with lots of advice, support and special feeds to have Phoebe’s system sorted very soon. We do feel that Phoebe having contracted the Norovirus has been a contributing factor and we will chat with Rob about this tomorrow.

Thanks Lissa for your question regarding the preparations for the meds, its sounds a little more complicated than it is but when you have a few doses to give, its so important to make sure all the amounts are correct, making sure you have a large syringe to take a sample from the line to test on a pH indicator strip, we use these to ensure that the line is situated in the correct place within the stomach and finally a flush for the line when everything is given to keep the line clear. The preparation takes a little while and before you know it, you have given a set of meds and the next ones are due!!

Phoebe will need to take quite a number of meds for the next few months but these will reduce until we are left with Penicillin which Phoebe will need to take for the rest of her life.

Over the weekend, we have spent time talking about Phoebe’s diet and appetite and truthfully it feels a welcomed relief to all of us that Phoebe will have this extra helping hand to really boost her recovery before we are finally discharged from the unit. We will then continue to be seen in the weekly clinic.

Over the last few days, Phoebe has had some sickness in the early hours of the morning, bless her. We obviously have to change her bed and clothing and wash her, it upsets her a little but she tends to settle again very quickly. This happened again last night and unfortunately the tube came up, we removed it and let Phoebe settle. This morning we called our Community Nursing team and a lovely lady called Debbie came to see us. She re-inserted the tube, Phoebe was a little sick but after a few minutes she had settled with it ok. Once we are home full time, one of the nurses will pop by to discuss the care required once discharged.

Being Sunday, we headed over to Mum and Dad’s for lunch and I have to say it was absolutely delicious, to think at one time I really disliked the traditional Sunday lunch but now couldn’t do without it!!
Margaret and Frank popped by to see us and Phoebe was delighted, Margaret always brings in lots of bountiful energy, just like her mum, our Auntie Winnie. We hope you are feeling better Auntie Winnie after your fall, we’ll send all our healing energies, to help you become mobile very soon!!

Gwen and Marge came over for a cuppa early evening, Gwen’s foot is much better, maybe it’s Phoebe exercising it for her by walking with Gwen everywhere around the house. Phoebe is a little wobbly when she walks and is more confident whilst holding your hand, this will improve as we build her strength and she’ll be running around soon no doubt!

Well guys, it’s getting late now and need to get some good sleep ready for our early start, so for now, we bid you goodnight from Newcastle under Lyme until our next posting from Manchester…..

‘May your days all be blessed with the presence of an angel watching
over you.’

Douglas Pagels

Sleep well dear friends..
Much love…Lynn, Ade, Phoebe and Spirit Eleanor xxxx