Mini cholangitis scare

We've had our first 'unexplained fever'. Hannah developed a slightly raised temperature on Sunday evening about 6. Calpol brought it down, but on Monday morning the temperature had begun to climb again and by lunchtime had reached 39.5 degrees (103 in farenheit), with no other symptoms so we decided it was time for a trip to the hospital. The upshot is that the LFTs came back as normal so it was put down to being viral, and we were sent home, but it was a bit like pulling teeth to get there! More of that shortly....

Any BA/Liver parents out there will appreciate this as a brilliant set of LFTs
Total Bilirubin 6 (0.35 in US measure)
Albumin 36
Alk Phos 275
ALT 49
AST 60
Hurrah!

So....the story. As per the 'swollen tummy' incident we were seen first of all by a house officer. I told her that there should be a copy of the shared care guidelines from Birmingham and the letter from Dr Coad on the ward. No, not on the computer. No, we don't keep any files on the ward, they are all in the 'bowels of the hospital'. So I produce Dr Coad's letter. Ah, you need to be seen by a registrar. Wait for the registrar to finish with another patient. Well, Hannah seems fine, I don't want to take blood unless it's really necessary, I'm sure it isn't, I'm sure it's viral but I'll just check with the consultant. Wait for the consultant to finish with another patient AND write up the notes. Oh no, don't assume anything without ringing Birmingham, they're very fussy about their patients. Registrar phones Birmingham. Overheard: 'If it were ascending cholangitis there would be other symptoms wouldn't there? Oh right, not necessarily. And it's not really necessary to do bloods is it. Oh right, it is.' So it took 2 hours to get to the point where they took the bloods, whereas if they had been able to find the guidelines from Birmingham they would have told them to do the bloods straight away. SIGH!

I am going to ask for my own copy of these guidelines to take with me if I have to go there - it will save a lot of time and bother.....Anyway the good news is that today Hannah is 100% well and completely fever free, so not only was it 'just a virus', it was a short lived one too, so we are very thankful.

Vaccinations...getting there

Hannah has had a quiet couple of weeks, just the Hep B vaccination last week (she was her usual brave little self, suppose she thinks having needles stuck in her is just something that's part of life). She remains the picture of health, fortunately she seems to have avoided the nasty virus that knocked big sister Caitlin for six. We have the next hep B on April 13th and then no vaccinations for 5 months!!!!!!! (After 11 injections in 8 sessions over 4 months )

Unfortunately there's a bit of a glut of them in the autumn, but after that I think there's just Pneumovax at 2 years and the yearly flu jab.Her next clinic appointment (Dr Coad again) is on 3rd June so she will have bloods taken just before that. So long as Hannah's health continues to be as good as now, we have a much needed family holiday planned just after that.

Caitlin is back to her usual self which is a huge relief, it was not very pleasant to see my normally bubbly little girl so ill and withdrawn. This is the first time she has had anything more than a cold or upset tummy and I don't think she knew what hit her! The docs think she was hit by 2 viruses in quick succession and her little immune system struggled to cope. I am working on an independent website to free up the caringbridge space for someone else, so will post a link to that when it's finished

First clinic visit to local hospital

Hannah had her appointment yesterday with Dr Coad, the consultant paediatrician from the local hospital. Everything went brilliantly! He examined her tummy and said he could just feel the edge of her liver but nothing else. Her blood tests from last Weds have come back with "virtually normal" liver function! The numbers are stable from her last bloods on Jan 11th. So at the present time things couldn't be better, thank the Lord! He actually bought up the issue of taking her in to the children's ward and said we should always be seen by preferably a consultant but at least a registrar, and Birmingham's notes should always be referred to. Her weight is now up to 15lb 13oz.

Hannah has unfortunately been exposed to mumps! I am hoping that she'll have a natural immunity from me (I believe this is why they don't do MMR until 13 months) but am going to phone Birmingham to check. Big sister Caitlin is also poorly at the moment (not mumps!) and feeling a bit sorry for herself - seems to be some sort of virus - so hope none of the rest of us get it. Back to Hannah, we see Dr Coad again in 3 months, next bloods just beforehand. Next up is Hepatitis B vaccination next Tuesday.

Just as an aside I faced an inquisition from a pharmacist today as to why Hannah is on a long term low dose of antibiotic. Had to go into the whole biliary atresia/kasai/cholangitis saga in the middle of a crowded shop...ah well.

At the moment Hannah really is our 'miracle baby', we could not have dreamed that she would be doing so well at this stage, please pray with us that she continues to do so.

A frustrating trip to the paediatric assessment unit

I've been a bit concerned that Hannah's tummy looks a bit swollen. I took her to the GP 3 weeks ago, he referred us to the local hospital children's ward. She was seen by a house officer (don't they rotate from one ward to the next every 3 months) who examined her for about 5 minutes. He didn't pull up any of the notes and protocols from the liver unit. He tapped her tummy but said he couldn't find any fluid, it was probably just wind. I don't feel that for a baby with a serious and rare condition we were taken seriously especially with the sinister implications of a swollen tummy in this condition - he had to ask me the name of the procedure she's had (in her notes surely). No bloods ordered or anything. Anyway I have spoken to her named consultant at the local hospital, he has been really helpful. We were due to go to his clinic for a routine visit Monday and he has asked for bloods before then (they weren't due for another month) because I'm concerned. So we go for bloods today and see him Monday - will update after that. I'm praying I'm just a paranoid mummy and everything is fine....We are also going to tell him that we are not happy about her being examined without the notes from Birmingham, and if we have to take her in with any possible liver related concerns then we want to see a senior doctor.