Seraphina now :-) Top photo shows a brief oxygen free moment so I could take a pic of her beautiful face:-)
cant believe so much time has passed since my last post on here. So much has happened.I will try and catch up but will probably miss out loads.
Probably one of the main things is October last year Seri has a session where her gut bloated out and she was in lots of pain we got admitted to Sheffield Childrens and they put a tube up her bottom to drain away the poo,then she was restarted on feeds etc etc and we got let out on the 17th November.
several days passed and then the same thing happened again but this time MUCH MUCH worse.She was having dark green bile coming out of her gastrostomy,her tummy was bloated and hard and then she started having great difficulty breathing,it was awful.You dont want to rush into hospital at any little thing in case it sorts itself out but then you are sat panic stricken and watching for any little change.I sat up with her all night and she just lay motionless wimpering and looking weaker and weaker.amazing looking back how quickly she deteriorated.We ended up calling an ambulance on her birthday.she got admitted to UHCW on the ward but only stayed there around 15-20 mins before being transferred to HDU and then only overnight before being transferred to Birmingham Childrens Hospital as she was on 20 litres of oxygen, antibiotics, salbutamol nebulasers,another drug to open her airways and nothing was working.
When we got to Birmingham they informed us that not only has she got Bronchiolitis but she also had a siegmoid Volvulous (where the bowel twists ) and had to have emergency surgery.The surgeon asked me if I wanted a stoma bag when he operated, so matter of fact! I was horrified and said NO! my little girl had enough holes already without another one to add to the collection.
Waiting for her to come out of surgery seemed to take forever,eventually she arrived back at HDU. but something wasnt right,I just knew there was something wrong still but the nurses just looked pitying and told me to relax, she was transferred to the ward as they needed the HDU bed....and it was then things started to go wrong.Her oxygen requirement started creeping up higher and higher,her temp went up eventually we got to 98% oxygen and the staff on the ward were beside themselves. To give them credit the nurses on the ward at BCH were brilliant Seri had a nurse in attendance at all times in her room watching her constantly and trying desperately to get her an ICU bed,when she started fitting they were at the end of their rope with the HDU/ICU staff who came down and said she wasnt bad enough etc etc.I repeatedly corrected them when they said she wasnt breathing hard enough and told them she didnt have the energy..all that would happen next would be that she would start having apnoeas as she ran out of strength to fight any more. They took a chest xray...it was bad, she had pneumonia on both lungs as a result of having to operate when she already had a chest infection. But still there was no space for her
Eventually the inevitable happened...she stopped breathing,again and again her sats dropped as she just couldnt fight any more.I cradled her head in my arms and kept telling her to hang on and how much i loved her.the look in her eyes killed me,so helpless,pleading with me to do something and saying 'Mummy I am so tired,do something..'
One Doctor came round to see her and called me outside.He plainly said to me 'Look we see yor daughter as a piece of meat with a stomach,lungs and gut non of which work properly,she has no life,In my opinion you would be better not to take her to ICU but just let her go.If you get us to intervene then all you will be doing is commiting her to life' I was horrified,speechless........
When the ICU Doctor came round this time he just took one look at her and then turned to me and said..'you KNEW this was going to happen 48 hours ago didnt you.' Yes' I replied (exasperated by this time) 'I know my little girl'.Then he asked me if we had any end of life plans for her and what we wished for her if the worst should happen
She was taken to ICU but was too weak by this time to cope with CPAP and so they put her on BIPAP,she needed some chloral to calm her down and they got the stuff ready to intubate (they warned me they had a low threshold for intubation on her as she was so weak) I once again whispered in her ear 'come ON Seri you CAN do this' praying to God for help and my prayer was answered she started to settle into the rhythm of the machine.
Christmas was horrible as was new year.I saw very little of the children as Seri was not in any state for visitors.
I will always remember new year the most,Seraphina was at her sickest (her lung had collapsed) on more drugs than I cann remember the names for...the clock striking midnight in ICU.The nurses had a couple of televisions on showing everyone in Trafalgar square as they handed out fizzy apple juice to everyone. I drank mine and then as the clock struck I bent down to Seraphina who waas still on Bipap and completely drugged out of it on Morphine and Ketamine and whispered ' Happy new year sweetheart' and kissed her.Not knowing whether I would ever see her open her eyes again.
I honestly felt like my heart was being ripped in two.
I dont remeber how many days she was on BIPAP exactly,I know she was in ICU for over two weeks and I spent every day and every night sitting in a chair by the side of her....thank goodness for coffee!
As soon as she was off BIPAP I wanted her transferred to Sheffield,they all knew her there and the Nurses from S1 even phoned me on ICU to see how she was doing.
I was so glad when eventally we ended up back in sheffield.Seraphinas bowel had gone into shock and no matter how much the doctors tried she wouldnt tolerate anything. It was decided to start her on TPN and as she had had a long line and a femoral line in and pulled them both out they took her to theatre and put in a Broviac linewhich was a longer term solution.
Well to cut a long story short after a very very long stay which involved a UTI and another infection and much trial and error trying to get her gut working she came home in the middle of January......oh happy day!! We had our Christmas all over again with presents and it was wonderful. seraphina came home with her line in (Just in case) and we got used to the routine of flushing it and dressing it twice a week.
Now to move up to the present....we have moved house so that we can have adaptions done to build seraphina her own bedroom and bathroom.Hopefully work will start soon on that.
And.....Seraphina has been diagnosed with Rett syndrome,another blow.
She no longer says any words, she doenst stand and she doesnt take steps, she grinds her teeth,repeatedly wrings her hands and wipes saliva all over her face.Yet she tries to communicate with her eyes,cries when we turn her programmes over:), she LOVES Humf! She very rarely looks at you but smiles lots and is very ticklish!
We know her life is limited,we have been told the average expectancy is 7 but try not to think about it.
She is gorgeous,a total blessing...my world.