Thursday, 6 September 2012

Thurs 6 th sept: there is no end in sight!

Well to keep things brief, Harry continues to be very poorly. We learnt on Tuesday that The x- ray taken on Sunday has highlighted that Harry has an air lock in the lining of his bowel which is a side effect of radiotherapy. This can cause stomach pain and diarrhoea, on Monday night Harry was up every couple of hours complaining of severe cramps and this we think has been the cause. Therefore on Tuesday it was immediately nil by mouth, on advice from surgeons, this is to give the bowel a rest and heal,  apparently this can take 1-2 weeks to heal. We thought that this was the end of complications, what with Harry's line infection too, but as our story goes No! Harry's stool sample results finally came back on Wednesday and with this information we learn that Harry has a virus, which is another cause for his recent diahrrea and weight loss! In a immune suppressed kid like Harry, this could take weeks to get rid of! Untill 48 hours clear Harry will remain isolated! Its not airbourne and can inly be passed on if you have contact with his poo and don't wash your handds! This we vigilantly do, so can't really see it being contagious if vigilance is adhered to! Wednesday also brought mixed information, one doctor said that Harry could eat small mouth falls, so he had some cereal, then an hour later, this had changed to small sips if water only, leaving a vey upset Harry, whom had made a pizza with the Candlelighters play work and was then unable t have any! DOctors should be very sure of facts, before telling children such things! Harry has minimal control over anything at the moment, so not even beng able to choose what he eats is not good! It is Thursday today and Harry has nw been allowed to eat very small portions of plain food! This may all change tomorrow though, who knows. Harry spiked a temperature again today. he remains on antibiotics, the cause is unknown and could be the continued line infection or a side effect of the diahrrhea?
Paul has been staying with Harry the last couple if days, giving me a break. Though yesterday I felt more wound up by not being in control of hearing all the info first hand and not being there to question the virus and then the misinformation with regards the eating/not eating! However, I have managed to relax and today was sunny! Yey! Callum had 2 little friends to play at our house and inparticular Michael and Callum had a great time playing  in the sand pit outside! I have really enjoyed being with Callum today. he's done 2 poos on the toilet today, so good going! 
I go back to stay with Harry tomorrow and I am really unsure when this phase will end. I visited Harry this afternoon and it was very evident that he still has diahrrhea. He remains on an intravenous feed. we can 't see an end in sight as I would think that whilst he has the diahrrhea he will benefit to continue with the the intravenous feed so that nutrition is taken into his system and this will help boost his immune system. If he comes off the intravenous feed (TPN) then all his nutrition will come straight out with the diahrrhea? One to discuss with his consultant I think as the nurse in charge of the ward today was very vague, when questioned by us!
To be continued, but it looks like Harry will spend his 5 th birthday in hospital and in isolation! Just yet another date for us to attempt to celebrate as best we can! As for school, well who knows! I am disgusted to learn that the max home schooling the government provide is just 5 hours a week! I know reception is a lot about play, but this is hardly any interaction from a professional! 
I do have some appointments lined up over the next week to see a couple of agencies to see what more can be provided to support Harry at home, so fingers crossed!
Harry in himself, is not actually too bad all things considering and has baked 2 batches of buns this week! One lot with myself and another with Janey, our volunteer play worker and now friend, oh and as said above made pizza with the Candlelighters play worker, as well as had 30 min daily input from a teacher from hospital school, in addition to doing painting, so quite the busy bee. It's everyone around him, his parents and wider family that are trying to cope with recent events as we have the awareness of the wider issues, complications and these problems create greater complexities and an ever more unpredictable playing field! 

No comments:

Post a Comment