Been a Long time!

Urgh, sorry it has been over a month since I last updated here. I cant update from my phone so was unable to do anything whilst in hospital but that is no excuse, I have been home longer than we were in hospital. My Excuse is life has been more busy than usual since coming home. We have ongoing serious battles with Social Services and education and health issues have emerged with Jonathan.

So first to Eve. The agonising over whether or not to go with the tracheostomy was horrid, the reality was so different. As usual the time away from us was longer than we anticipated but we had the added bonus of bumping into the aneasthetist on the way back to the ward after something to eat. She was able to assure us that all had gone well and Eve was doing just fine.

It was then a long while before we got the call up to Intensive Care, so by the time it came I was begining to get a little anxious. David had had to go home to everyone else before Eve went to Theatre and Nic and Sue had come to be with me. They arrived just after Eve went down and so we had gone to the restaurant to eat and have a drink before going back to the ward. It was outside the lifts we bumped into the anesthetist.

Once the call came to go and see her we were laden up with all our belongings and trotted off to PCCU. Things had changed since we were last here, the unit has been extended and modernised and it is all very roomy and comfortable.

The Male Nurse caring for Eve that night was really lovely. He made us all a cup of tea and then went through all Eve's care. Eve was peacfully asleep on a PICU Ventilator and looking very settled. The Nurse had to suction her and there was a little blood in the secretions but he assured us this was perfectly normal. Nic and Sue both spent a little time stroking Eve's sholder and talking with her before they set off home. Withing ten minutes of them leaving, Eve opened her eyes and gave me a huge grin!

The following morning when the day staff came in I asked if I could do all her cares under their supervision. I started with cleaning the stoma and changing the tapes holding the tube in place.

I made a couple of silly mistakes in cleaning, but knew instantly what I had done and was able to put it right. It took me 5 attempts to get the tapes right, but was assured this is not a problem and often takes a few attempts even when you are used to them.

Suctioning a Tracheostomy tube is so much easier than suctioning via naso pharangeal. within two or three attempts I was confident and by the end of the day I had my first signature of competence on my training package.

I was determined to be able to get Eve home as soon as possible so insisted on being there as much as possible and doing as much of her care as I could. Eve was fairly quickly weaned off the PICU ventilator onto her own. and then slowly started spending time off the ventilator until by day 4 she was only going back on to sleep. We were now back to where we were before with ventilation and even then the pressures and back up breaths were lower than before.

Eve was moved to HDU and then we had more contact with other parents and children....I say contact we were not allowed within touching distance of other patients bed areas but as parents we could hold a conversation and feel like we were not so isolated. There were three other tracheostomy Ventilated children in the ward, also a little girl with a naso pharangeal airway, this little girl also had Cerebal Palsy and her parents and carers were really lovely people, it was good to have someone to talk to who understood.

one week post surgery Eve had her Tracheostomy tube changed. I had been shown this procedure on a doll, and was intersted to see how Eve reacted to this. Apart from inevitable coughing from the irritation she coped fine.

Iris came later that day to start her own training. Once she and I were deemed Trachi Competent we could go home. The ENT Nurse Specialist came up to talk to us both and they arranged for me to do a change then Iris and then to have life support training and hopefully we could go home by the weekend. This was so much better than the 4 weeks we had been expecting. Eve had coped well, seemed so much better than before the Trachi and was smiling moving her arms and legs and even her head more than we had seen for a long long time. I couldnt wait to get her home and back into our routines.

We had visits from some lovely friends whilst we were in hospital....indeed day 1 Dom came bearing a gift of my favourite Mocha Frapecino from Starbucks! Saturday Lori came with bags of gifts for me and Eve, packages arrived in the post from Cornwall, Birmingham and Lincolnshire, I am still enjoying the chocolates from one of those packages.....mmmm thanks Sarah and Alan....see I am not a greedy girl, I made them last! Lori came back with Cath and between them they wore Eve out with tickles and laughter and cuddles.

Our training went well and we were indeed signed of Competent by Thursday afternoon, Eve could then escape from the ward, we went to the cafe for a meal before Iris loaded up her car with much Of Eve's belongings so that there was less for us to take home the next day. I rang David to tell him we could come home but there were problems!

David did not seem at all pleased we were coming home. There was a serious transport issue, a bald tyre and an MOT needed meaning we didnt have a roadworthy vehicle for me to be picked up in. I went back to the ward sister to ask if there was any chance of transport....it couldnt be booked till the morning! so on tenterhooks until then. At 8.45 I was told no there could be no transport home, I tried to catch David before he dropped Rosie off but no luck. then at 9 am I got another call to say, transport is sorted and coming and 9.45. I rang and left a message at Jonathan's college that I was sorted!

There was another panic though in that some of the essential equipment had not arrived. phone calls were made and messages left and eventually the respiratory nurse specialist arrived with all we needed.

Despite Iris taking a car full home there was loads to load into the ambulance, in the end we took a porters cage loaded to the brim and then secured that into the ambulance, it made life so much easier this end too!

And so we were on our way, 11 days after surgery we were going home. Eve was so happy, I was feeling a little apprehensive about our new challenges but happy to be going home.

Once I arrived home I realised why David had been less than pleased. He had been attempting to decorate the hall landing and our bedroom. Thinking he had a month to do it in he had loaded everything into Eve's room and pressed on with laying anew floor in the landing and stripping, wallpapering and painting the walls. He was disappointed that I was not coming home to it all finished!

But anyway me and Eve are home and she is so much better than she has been in a long long time.

I need to organise some photos for you.....but not now.

Thank you for all your prayers