This week has been a bit of a mixture to be honest.
On Monday we had our initial visit from the representative from Acorns Childrens hospice.Those that know me will know that I had been dreading this meeting.We had the referral done months ago by our Community Nurse and as long as it was this vague 'referral' and nothing concrete then everything was fine and I could happily file it in the back of my mind as something I didnt need to deal with now but sometime 'in the future'.
I had quite honestly thought of a hospice as somewhere children went to die...well in truth I suppose it is but I found it was also a lot more and the hospice lady I was so dreading meeting was actually the nicest person you could ever wish to meet!
She wasnt pushy,she wasnt judgemental and actually she was remarkably easy to talk to and I found myself talking to her more than I have ever talked to anyone.She showed me pictures of the hospice and ...well I dont know what I expected it to be like but whatever exactly my pre-concieved ideas were it WASNT .It looked like an extremely bright sunny and happy place and I could already see how Seraphina would love the sensory room and the garden.
I breathed a sigh of relief.Im still nervous of actually plucking up the courage to use the place but its not the gloomy hospitalised place I thought it would be and actually it was nice to be able to talk honestly to someone who 'KNOWS' If you see what I mean.
So that was the morning...in the afternoon was another big appointment...the first one with Seraphinas Consultant in about 10 months.I really didnt know how this was going to go...
She was lovely as ever, I found myself unable to say how 'dumped' we had felt with no means of communication.She too has a lot on her plate and although I still believe that Seraphinas diagnosis could have been delivered in a somewhat more sensitive manner I was also reminded on talking to her exactly why all those months ago when she spoke to us on the ward,why she made such a lasting impresion on me and why I was determined that she would be Seraphinas consultant one day.She is human, I think she does truly care and I do think that she has Seraphinas best interests at heart.When I think of all the rubbish we went through with her neonatologist and how that nearly caused me to have a complete melt down, all the totally unfounded accusations we had been put through before she had her diagnosis of Cp and then Retts I thank God that we have this Consultant now.Its so nice to have a consultant you can have truly honest discussion with and who respects you back.
So Seraphina has Retts,of course one of the first things we asked was about life expectancy. She was honest about this and said that she had had a girl not unlike Seraphina who had Retts and she ,in her words 'managed to get her to 19'..... but of course this child didnt have the complications of Cerebral palsy,prematurity and as the consultant saifd 'she didnt have Seraphinas bowel'.In the next sentence we decided that 'lets just try and get her through the winter'
Its daft isnt it I found myself going 'Wow' as if 19 this was some grand old age like 102 or something.Only afterwards did I think....and process....its really nothing at all and the prediction of the consultant at BCH or 6 or 7 is even less.likewise the challenge of 'lets try to get her through the winter' looms even larger as a bear under the bed does when you are 3.
I comforted myself with the fact that she had been fairly stable healthwise for the summer so we were on the up,right?
But no,Seraphina obviously detected my optimism and decided to throuw a spanner in the works.she had a seizure on Monday evening, another on Tuesday Morning and then on Wednesday she was so so uptight and irritable she was like a little animal grinding her teeth,scratching her arms and legs, air swallowing for England and moaning 'Mmmmmmm,mmmmmmm' continually whilst wringing her hands and scratching her palms so much she split the skin on them.I tried everything so soothe her,gave paracetamol but nothing would stop these repetative motions..she was also withdrawn in her own little world...almost not quite 'with it' if you get what I mean.
I actually posted on FB when she finally dropped off....to me singing Eva Cassidy's 'somewhere over the rainbow' a song which she loved.
And then the seizures started lots and lots of myoclonic jerks which woke her up repeatedly she drifted off only for them to come again and again and then she went rigid arms flexed eyes open and head turned to the left followed by tremors.This was accompanied by her sats dropping...thank GOD we have a sats monitor as this has saved her life more than once.I watched it step down in increments to 85% and just sit there.I pnhoned a friend at that point to ask them to pick up the children as i knew I wouldnt leave her.Then as I wa on the phone she decided that 85 wasnt spectacular enough and chose 78% as her 'number of choice'.I dont truly understand why her sats were so low as she was breathing quite rapidly and noisily but looked very very pale. But hey ho I decided ,this had been going on for 6-7 mins and so I gave her Buccal Midazolam.Thankfully this worked but when I phoned the Com Nurse it was decided as her sats were still wobbly on double the o2 she usually has that she ought to be seen by the Paeds at hospital.
So a while later I was in the Taxi to hospital.She had only got sats of 91% when she arrived there still on double o2 so it was decided she should have a chest xray.
Once again whilst waiting I got the student doctors,this does make me laugh especially as you hear them at the desk beforehand deciding who is going to get the 'short straw' of interviewing us lol.I did mention to them we always get the students because Seraphina is probably a Paediatricians nightmare lol...they had to agree, who says hospital is without humour!
Anyway we then saw a very nice male consultant who wanted to keep Seraphina in and give her antibiotics.He thought she had a Urine infection and that she had probably aspirated when she was fitting....we 'discussed' her staying in *grin* with the result that he prescribed antibiotics for her and we went home :) think he realised that it wasnt a good idea to mess with me rofl! and to be honest she was more likely to catch something else in hospital!!
So we have been at home, she hasnt been particularly happy and her tummy is dishing out lots of what I term 'shrek bile'...if you have seen the movie you will have noticed the particularly violent green colour of this character (the people of Sheffield childrens hospital now know exactly what I mean now and appreciate my 'way with words' :)
However she hasnt fitted again so I am giving her the benefit of the doubt until the AB's have kicked in.
This sudden unexpected outburst has reminded me how poorly she can get quite suddenly though and I have to say I am dreading the winter even more now....lots of praying needed I think.