where we are now

Just realised its been a few weeks since I updated Seri's blog....so much has happened.

Ok firstly she had her 3rd Fundoplication.Heres an 'update post' from another site that I posted when she came out

Seraphinas surgery took longer this time than expected because her liver and stomach were stuck together and the surgeon had to separate them so what I was told would only take 3 hours actually took 5...I was getting quite worried in the end wondering what had happened. Anyway she went to PICU (paediatric intensive care unit) in the end with arterial line,cannula,jugular line and picc line plus ordinary cannula in her foot want realy prepared for all those needles but fine when they explained them.It was hard going back to a picu after the time when she was so poorly and ventliated and I must admit it did freak me out, walking in there bought it al back. They were brilliant in there though and really looked after her.She had to have a catheter fitted as she wasnt weeing but they said that could be down to the anaesthetic and morphine drip.She needed morphine for 4 days in the end ,along with diclofenac,paracetamol and diazepam as she was really feeling the pain this time round but is now just having paracetamol. We are on antibiotics for a staph aureus infection in her Gastrostomy and one of her incision sites opened up again but they seem to be doing the trick..they gave them IV first to get them into her system. To start with she wouldnt tolerate her feed and so they rested her ut for 3 day in the end but shes now on 45 mls per hour so only another 20mls to go to get to her usual 65mls per hour. The only other hiccup was one day when she decided she just didnt want to breathe she kept having apnoeas and her respiration rate was 10 ...so they wanted to take her back to PICU to keep an eye on her as she was doing this even on 1.5 litres of oxygen.Thankfully by the afternoon whatever it was had passed and she was breathing better. she did have some fun whilst being in there though....as shes lost weight and also grown taller and stretched out her splints dont fit any more so the man came to re-plaster her legs for new ones.....and Seraphina tried to 'help' him ROFL..by the end of the procedure there was plaster of paris everywhere!!! even her feeding tubes were plastered lol.Dont think hed been helped that way before...good job he was fairly easy going,the room looked like a bomb site! They will be ready to pick up on 27th October when Sam has his surgery so we will get them then...they are bright yellow this time and going to try and get some stickers to go on them. I will take a pic when she has them Anyway thats about it, shes home (still refluxes but minimal) and just got to build her up a bit now and get rid of her infection .

Then unfortunately she came down with a gastro bug which really knocked her back.Poor sausage.meanwhile Samuel (her 4yr ols brother and felow refluxer lol) went in hospital to have colonoscopy,endoscopy and PH run done.Got back from that and poor Seri had come down with a pneumonia so ended up last Saturday morning taking her to the hospital.They put her on two different lots of antibiotics which shenhas just finished.Still not back to her old self though.

She got weighed yesterday.....and has lost 10lb in weight!!!!(12lb in total if you count the but she lost before fundo).Was quite shocked...so was the dietician.Sheffield have been informed and the dietician phoned me and we are to feed her continuously now over 24 hours and hopefully she will maintain her weight(or even better put weight on!).The only concern they said is that feeding continuously has an effect on liver function ,but they are going to look into it and let me know next week what the effects are likely to be.

the other thing that has been mentioned by nurses/dietician etc is Seri going into a hospice now for weekends :-(.I know its probably the wrong impression but I associate hospices with dying kids and it just made me shiver at the thought.I have told them i wouldnt consider it at the moment. I KNOW we are knackered...exhausted even (this is the 5th week sleeping on the floor downstairs) but at the end of the day its not Seri's fault shes disabled and requires so much care so why should she be sent away.The nurse has also asked if we know of anyone medically trained who could give us a couple of hours respite in the home every now and again....I dont know of anyone though.Might ask at Church but dont think there are any nurses and thats who it would have to be because of her feeding tubes and suction machine etc.

Well better go and run my sweetheart a bath...have been to lush and bought her some 'ickle baby angel' bath ballistics so she can have a lovely lavender bath as Daddy is home so we can bath her between us and then be moisturised with Lush dream cream.Sure she'll enjoy that!

Heres a pic of her in her wheelchair before she got poorly