Hannah’s news

Starting with the easy one, this is almost the same as the journal update on her CaringBridge page.

The last few weeks have been busy for Hannah. She had blood tests done on 3rd June (not a whimper, brave girl) and we obtained the results on 10th June at an appointment with Dr Coad. Her LFTs remain stable, in normal range apart from a mildly elevated ALT. Here are the results.
Total bilirubin 5
ALP 344
ALT 60
I also raised the issues we have had with the paediatric assessment unit (help, something else to blog about!) at this visit and have since received a copy of a letter Dr Coad has sent to them so hopefully next time there will not be any more problems….hmm, won’t hold my breath….

Monday 4th July was our first visit to Liver Clinic since January. Unfortunately we did not get to see Dr McKiernan but did see an excellent registrar who was most informative and receptive. There was plenty of good news. If things continue as they are, and subject to confirmation from Dr McKiernan, then she can stop her vitamins in October (1 year post Kasai), return to Birmingham in a year, and move to 6 monthly blood tests and local hospital visits. Woohoo!!!

She will continue indefinitely on her rotation of antibiotics. In a way this is a relief as I would feel extremely nervous about her stopping them. Her Urso has been increased from 60 mg twice a day to 100 mg twice a day. This is partly as her weight has increased and also to try to relieve the itching she gets in her ears (she scratches them until they bleed). If this fails then we have been advised to try Piriton (an antihistamine) before moving on to any of the more heavy duty itching meds.

More good news – her liver is now a normal size and long may that continue! The veins on her tummy which had been dismissed locally as ‘insignificant’ were discussed as a possible symptom of portal hypertension. The doctor said it was encouraging that her liver and spleen are not really enlarged but reassured us that this would be monitored and we may have an ultrasound at our next visit to see ‘what’s going on in there’.

So all in all a good visit and our little miracle girl continues to astound us.