We've just walked in after a trip to Sheffield Childrens again.Its been a bust week or so and so I thought I would blog to bring you all up to date with where we are at.
We have been struggling to try and get Seraphinas feed up, so far we havent managed it although when her steriods were increased back up to the max after trying and failing to wean them down we noticed an improvement in her straight away. we are now on just over half strength feed but have not managed to get any further.we have still had bleeding on and off but not as much as before.
On friday I decided to take her to the GP as she had what startwed out as a very small yellow hear kind of thing on her chin...but then it kept coming up to a head, bursting and then getting bigger,coming up to another head bursting repeat repeat, till it was almost the size of a 10 pence piece and very painful for her. As I didnt want it getting worse over the weekend and she had had a litle bleeding I decided to see the GP for er opinion and ask them to check her HB.
Well to cut a long story short the GP took one look at her and called an ambulance...she didnt help herself mind you by having a seizure at the surgery! The GP felt she looked pale enough to need a transfusion and the spot/boil on her face was definitely infected.
They sent an ambulance....but the men apparently couldnt take her (wrong ambulance apparently?!?)
As she had a seizure and was out cold the ambulance men put her on thier SATS monitor (much to the great interest of everyone else in the waiting room who began to stare at her like she had three heads or something) and ordered another ambulance the HDURV they very importantly told me. ''rrrright I said....which means??'' '' Oh its the High dependancy retrieval vehicle''...I enquired whether she needed that level of care and was assured she did...the only hitch being that it was coming from Birmingham....in the rush hour....45 mins away *sigh*
Im not sure what happened next but they changed it to another vehicle which was closer and another 45 mins later (yes this is 2 hours later for a 999 ambulance!!) when the surgery staff/GP and practice manager were all ready to rip the ambulance mans head off, the ambulance arrived....
............only for him to say ''sorry I cant take her'' *cue me mentally slamming my head up against the surgery wall * but in reality saying rather curtly'' WHY NOT?!?'' apparently they couldnt take her as they hadnt got a sats monitor on board. I suggested that they borrow the sats monitor from the other ambulance to go over with but they said horrified ''oh no! we cant do that!!'' as if I had suggested the Queen herself run naked through the street
At this point I got a little bit annoyed (just a little !) and told the receptionists what they said..they assured me very loudly that they were logging all this down as a complaint and suddenly they could travel. The man from ambulance 1 accompanying the SATS monitor on ambulance 2 ( in case it got lost obviously) still attached to Seraphina...along with Ambulance 2's two crew,whilst the other crew member from ambulance 1 drove on ahead. SO one simple trip to escort my daughter to hospital required 4 ambulance men and two ambulances (work out what a cost effective way of using taxpayers money that is!!)
At hospital they took numerous bloods and found her iron level had dropped but not, thankfully,low enough for a transfusion. Her infection markers were up and so antibiotics were prescribed for that otherwise we were allowed to go home as we were in Sheffield on Tuesday anyway....what a day!
Today has been the Sheffield trip. The decision was made to start the Azathioprine now as she was suffering quite badly from nasty side effects from the steriods (increased anxiety, agitation, more seizures, self harming and increased ''Rettness''where our little girl is incredibly hard to reach) at such high does and when we were reducing them slightly her gut wasnt liking it.
he had the results from her biopsies which showed lots of eosinophil infiltration (for my 'gastro friends') and abscesses throughout her colon. I can understand why she has been in so much pain.
The consultant was concerned that her iron level had dropped so quickly and explained that in the cases where an inflammatory bowel diseasecalms but she keepas bleeding then a colectomy may turn out to be the best option for her along with TPN but we are trying the azathioprine first which is another immunosuppressant to use along side the steroids. other medicines have also been raised as it was agreed her bowel is doing absolutely nothing at all on its own now and 48 hourly suppositories arent very nice for her at all...though may be neccessary if these meds dont work and her bowel has completely shut down.
She will also be having weekly bloods from now on to monitor her..
She is about the same weight-wise at just over 17 kilos which is pretty skinny for a child of 3'10'' but at least she hasnt really lost any more.
Your prayers as always are very much appreciated both for Seraphina and that breakthrough which will enable a cure for Rett syndrome...one day.