Monday, 24 October 2011

Home for how long..?? Rett syndrome awareness

Well we are home after 3 weeks in Sheffield Childrens hospital.
A totally unexpected stay...we went for a routine clinic appointment with the surgeon. I had phoned the surgeons secretary at the begining of September and said that Seraph was losing blood in her nappies but the earliest we could be seen was the begining of October...well we saw the surgeon and he asked for a routine full blood count (iron level check ) as I asked whether he would do one and he acknowledged that Seraph looked ' a bit pale'
on the M1 motorway on the way back we had a phone call...come back to the hospital as Seraphinas HB was dangerously low....5.5 in fact!
we drove back to the hospital and within a few hours we were on a ward and Seraph was getting an urgent blood transfusion.
It was decided to do a colonoscopy and endoscopy once her HB level was up sufficiently to see where the bleeding was coming from.

I think I went through it all in auto pilot, so shocked was i at the level of her HB. It was only when she had gone to theatre I started to think..and kick myself for not realising sooner how sick she was. Now we are home I feel pretty much the same...WHY didnt I realise sooner..and how I wish I could ' make it all better' ...thats what Moms are supposed to do right?

After the colonoscopy the Consultant Gastroenterologist came to see me and told me that Seraphinas entire colon was inflamed and bleeding. He said it could be either infection or ( as he suspected) inflammatory bowel disease associated with Rett syndrome.
They put her on very strong I V antibiotics and waited for the biopsy results to come back. I explained that we had been struggling with feed for a while and she could only tolerate 5-6 days on feed before we had to drop to dioralyte again. They tried to re-start feed and everything that they put in was just coming straight back out again. she was in such pain she had to have a continual infusion of morphine to keep her comortable.

we werent getting anywhere. even after the antibiotics were stopped they couldnt get her to tolerate even 5 mls an hour of feed. she was put on TPN which is feeding throgh a a good long term solution bwecause of the side effects opn the liver etc but for short term it was just what she needed.
they also started high dose steroids.
within 24 hours the diahorrea had stopped and she was sitting up on the bed, not needing as much morphine and smiling that absolutely heart melting smile of hers.
The consultant said that it was definitely inflammatory bowel disease but that the steroids should sort it out. his collegue said that they didnt honestly really know what was wrong but ashe was behaving like a child with inflammatory bowel disease.

then...they tried feed again.

and along weith it the teeth grinding started as did the picking at her hands until they bled. still they pushed up the feed and eventually turned the TPN off. withing 24 hours of coming off TPN we were sent home..still on steroids but on a reducing dose.
by the evwening of the same day Seraph was back to diahorrea, horrible mucousy stools and a painful tummy...ooh not forgetting the bleeding bottom.
I phoned te childrens hospital in the morning and the dietician told me to stop the feed and put her on dioralyte and then gave me a plan to follow to try and build up feed again.she said she thought the consultant hadnt realised exactly how fragile Seraphinas bowel had become.

Needless to say we have had to 'relax' that plan a bit and take it a bit more gently even than the dietician said but we are getting her to tolerate feed very very slowly. she is grinding her teeth again and her tummy once again today looks bloated but she is smiling on and beautiful brave girl. I so wish she could tell me how she was feeling, whether her tummy i wold know whether to increase feed again or to let it be.
She was so much better on TPN but that is not the answer...thats a last resort.

we have had no follow up phone call from the dieticians either here or at the childrens which is disappointing...we feel like we have just been left to 'get on with it' as they dont have any answers.

we are due to go back to the childrens hospital on the 15th...if we can keep her 'well' till then.

Im sorry if this post has seemed a little bleak...but this, at this point in time is a brief glimpse into what Seraphina has had to face on a daily basis due to the ravaging effects of Rett syndrome and its associated conditions.

October is Rett syndrome awareness month. Throughout this month many parents of litle girls who suffer just like my little sweetheart have been posting to raise awareness of this little known disease...a disease which has taken so much from my gorgeous girl.including her ability to speak.

However there is hope...Rett sydrome has been reversed in is potentially REVERSABLE.
But research takes money...PLEASE consider donating ...any amount you have to the Rett Syndrome Research Trust   and help speed a cure for my darling Seraphina and girls like her.

Thank you.

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