As the title suggests we are home after 3 months in hospital. Seraphina is now totally TPN fed ( for those who dont know what this is it is being fed through an artery into the heart ). Its a love- hate relationship as yes, she is 5 kilos heavier than she was when she was admitted BUT it puts a strain on her liver and will eventually damage it. At the moment though it is a neccessary evil as Seraphinas gut is now so fragile that she cannot even tolerate 5mls per hour of weak feed without it causing her extreme pain and diahorrea/ bleeding.
It was a tough three months for both of us Seraphina coped so so well with everything overall but thee were times when there were no smiles and her eyes told me the depth of her pain and tiredness.It was hard seeing her like this and being able to do nothing to help her. Sending her off to Theatre and sitting waiting doesnt get any easier.
Thankfully now she is home and although fragile and still needing pain relief to cope with the medicines going into her gut she is smiley and giggly again which is a real blessing.
And I have joined the exclusive 'TPN club' alongside other DIY nurses who manage I.V's, blood sugars,take bloods from lines etc etc.All those things that as a parent you never want to know how to do...I am SO thankful for two people who have helped me taking the first tentative steps into the realms of TPN and yet, who I have never met...Kim Hughes and Stephanie Nimmo (please see her inspiring blog www.suburbansuperwoman.blogspot.co.uk ).Both ladies are superwomen in my eyes and I really really hope one day to have the pleasure of meeting them.They have both been there to answer questions and Kim inparticular 'checks in' regularly to see how things are.If my arms could stretch through the computer screen I would hug you both...THANK YOU!
We have also had wonderful support from Postpals (www.postpals.co.uk ) who have been amazing in the lots and lots of ways they have cheered up Seraphina and her brothers and sisters and me too with such luxuries as furry blankets and chocolate.
Our Church has been wonderful, settingup a cooking rota and making sure my husband and children were fed twice a week to save David cooking. I had several visits from people from my Church including one lovely couple who I shared a DIY communion with in our hospital room - the best!
Another 'happening' and life changing moment for me was,just before we were discharged from hospital, the death of my father quite unexpectedly. Thanks to a couple from Church I was able to travel one evening from Sheffield to the hospitalwhere he was and back again ( it was a long night) to see him and say goodbye. I played Matt Redman ''The Fathers Song'' to him from my Ipod and told him that God loved him and was waiting for him along with my Sister Catherine and my little angel boy Jesse.I prayed his heart accepted Jesus at the end, my spirit feels at peace about it, the God I know would have run to meet him broken as he was. He passed away within a minute or two of me leaving the ward, the Nurses phoned for me to come back but by the time I got back to his bedside it was too late.He died on 25th April. Thank you to Madeline and Dave for looking after Seraphina and doing the late night taxiing so that I could be there at the last.
I can honestly say I have felt Gods presence with me throughout this hospital stay,even when I didn't understand what was going on.I felt he was there with me.
One day inparticular when things werent looking good at all for Seraphina I cried out to God and said ''I know you are listening but today I need that extra reassurance....If you are with me and hearing me then show me.,prove it...give me something i can hold in my hands''
Later that morning the Chaplain called..his greeting to me was ''I was just passing and you both had been on my mind and so thought I would pop by and give you this..'' He placed a card in my hands and at the time I didnt pay much attention, we chatted and he left and then I looked at the card.. on the front it simply said ''I AM with you'' and inside a verse about God hearing our prayers...
God gave me something I could hold in my hands.
This has been a real comfort to me throughout everything that followed including my Dads death.
Little did I know when I left home back at the start of February that I wouldnt hear or see my Dad awake again. Already memories fade...I try and hear my Dads voice in my head, to recall the sound but I cant...strangely my Heavenly Fathers voice is much much clearer than my earthly one now..in some respects it has been for a while. How things change.
So another chapter is begining all round, Im praying we get to stay home for a while now, Seraphina is due to have her beloved Cherub, a Rag doll kitten, at the end of this month. we have had some fun buying bits and pieces to prepare for his arrival..its amazing how excited one can get about a cat litter lol
David and I are both signed off our TPN training and I can do bloods and access her port/put up extra IV fluids/blood sugars etc etc.Still havent got my Nursey certificate :0) but I guess its in the post.
Thanks to everyone who has texted/emailed loved and supported us through the last three months
((((((((((((( HUG ))))))))))))