worn out and hacked off!

Its been a really difficult few weeks here with one thing and another.Seraphina ended up in hopsital for 10 days as she vomited through her wrap for the first time and aspirated :-( 24 hrs later she had a temp,48 hours later it was higher and by the monday she was really poorly so i took her to the GP who put her on antibiotics.Unfortunately they didnt seem to do the trick and by the time our clinical genetics appt came round she was really not well at all.I took her to the appt but she had a couple of nasty choking episodes whilst there and the Gebeticist had to hold her whilst I suctioned her out.We felt the best thing was to go straight round to A&E and it was there she was diagnosed by the consultant to have aspiration pneumonia,from there she was blue lighted to the nearest bigger hospital where we stayed in.She had IV antibiotics but the cannula went twice as her veins are so bad and so after 48 hrs she was dropped to normal tube antibiotics.Unfortuntely then her o2 requirement kept going up and she ended up at her worst on 10 litres plus 10 puffs of salbutamol every 2 hours plus saline nebs and prednisolone!

It was hard as she developed dumping again due to the antibiotics but no-one knew what to do,I told the Docs we normally used Loperimide for this.The nurses tried to give her normal Movicol medicine and Domperidone as well as Loperimide!!!I tried to explain that she needed no motility agent or laxative when she ALREADY had the runs and I was told that they would have to document me regularly refusing Seraphinas medication!!(exasperating or what!)

I then had this nasty consultant come round and ask why she was on so much o2 and medicine insinuating that I was somehow the cause of her being unwell and giving me the third degree!
This upset me so so much and after he had gone I just burst into tears,I couldnt believe that they could think that.He clearly had no idea about Seraphina and it seemed to be a case of..'if we cant explain it blame the parents'

I have since spoken to Seraphinas key worker about this and hopefully she will be able to liase with her Paed to prevent this happening again.

Meanwhilewe got discharged with Seraphina only able to tolerate dioralyte and the weekend with her can only be discribed as a nightmare.We tried feeding her with the weakest concentration of Neocate at only 50mls per hour but she was pooing so much that we were worried about her dehydrating so increased the volume to 70 mls per hour....result...she was still pooing and we had the added joy of neocate dripping out of her already quite raw and baggy jejunostomy stoma!!!aaaaggghhhh! so we had to turn it back down again to 50 mls per hour and pray that with the loperimide it would eventually stop.

Thankfully it did stop and with bathing her stoma several times a day and putting maxitrol on it half the time and the other half padding it out with Mephilex it seems to have calmed down a lot.We have also been upping the concentration of feed very slowly each day so now she is on half strength and normal volume of 60mls per hour so progressing well.
o2 wise she is still requiring double the usual amount when asleep (1 litre) but once again she is heading in thr right direction and she has long term antibiotics now to try and protect her chest a bit more and inhalers too.

How do I feel after all of this.......exhausted,disappointed, gutted that once again we as parents have had the finger pointed at us for our daughters problems..even though she has a diagnosis for goodness sake which comes with many different complications or complex needs as the medical professionals like to call it.
Disappointed that a child who is clearly not well was discharged...bit sad she was discharged not tolerating any feed,leaky sore stoma and raised o2 requirement??Thankfully we know what to do....but what if we didnt?
Anyway at least she is better now.Yesterday we were in Sheffield and she got signed off from ENT yay! one Consultant down lol :-).He has given us an open appointment so we can see him again at any time but otherwise he is very pleased with her.Then we saw her surgeon who was disappointed that she had vomited again but ,like us, was happy just to wait and see how things progressed.However he did mention in surgical steps that could be taken a re-do of the fundo as well as the oesogastric separation which we were please about as the Gastroenterologist had said that it wouldnt be done again after she had had it done 3 times already.
Nevertheless we hope that it doesnt come to that.We appreciate that fundos dont last for ever but we hope it will be a long LONG time down the line before we have to consider that..if ever.

Today we went to get Seraphinas new splints and have her shoes checked.We have waited since 5th Feb for her splints and so were really disappointed that when he tried them on they were miles too small!?! not sure how that happened as she had casts done beforehand so they have had to be sent back and wil be redone :( lets hope its not another month!.Shoes were the opposite story...they are miles too big and make her feet look ENORMOUS! so they have to re-order them in a smaller size :-( they were ordered before Christmas!!

Maybe my the summer she will have both splints AND shoes...now theres a novel idea *rolls eyes*

You may have picked up on my tired and slightly sarcastic tone...I think my views of the NHS have fallen quite a lot recently.I feel disappointed at the way disabled chidren are treated as a whole but even more so disabled children who seem to be treated as second class citizens because they can speak up for themselves.Whereas we,the parents,who fight every day for our children to be heard,to have the care they are entitled to and for medics to appreciate the complexity of our children...what do we get in return for our untiring determination???disbelief,accusation,red tape and weak excuses.

This example says it all really...

Seraphina doesnt always cry when she is in pain.When the pain is bad she grinds her teeth ...I can tell its pain when I look in her eyes and also because I know her.When she was at her poorliest she had paracetamol but still she was grinding her teeth and her eys told me she was suffering so I asked for some more pain relief for her.
The nurse came and ...asked her to tell them where it hurt!!! (she doesnt talk) then commented that she was quiet and not screaming the place down.I told them that she was grinding her teeth and that was a sign of pain where upon thwe nurse said 'oh my child grinds her teeth all the time..' and as an after thought added 'I'll ask'.
Needless to say no pain relief came dispite me reminding them as they said she seemed fine....
If SHE could have asked for it she would have got it but because she couldnt communicate to them she got nothing............