...but hopefully soon! I rang Dr McKiernan's secretary; the poor woman was on holiday for two weeks with no-one to cover, and she seems to have far too much to do anyhow. I wanted to check that it hadn't gone astray, as problems with our post are fairly common occurances, but no, she hadn't typed it up yet. I bet it will arrive and not contain the full US report, and I will have to ring Liver Direct and ask them to send me one out.
I am very proud that I have managed to add a photo strip to the blog (I needed help from Andy with the HTML to position it in the middle) and I love the contrast between the tiny sick yellow baby and the fun loving healthy toddler. Unfortunately the photos are in backwards order and I'm not sure how to fix that, but I'm sure I'll be a multimedia blogging queen in no time.
Hannah has a few things coming up in the next couple of months...flu and pneumococcal jabs, and bloods at the end of October. Then, hopefully, a quiet six months.
Sunday, September 03, 2006
Saturday, August 26, 2006
Hannah is two!
This is a very exciting birthday for Hannah. Two years is a very special milestone for a child with biliary atresia, because it is a birthday they could never have reached without successful surgery - the Kasai, or Liver Transplant. Forty years ago, we would have watched her get yellower, and succumb to the complications of liver failure while we stood helplessly by, because neither of these surgeries would have been available. And even in the 21st century, we are among the lucky ones....for now. Babies and young children still die from biliary atresia. Some of them live in countries where the surgeries are not available or where there are very limited medical facilities. Some of their families cannot afford treatment. Even in developed, wealthy countries, the story can still be a very tragic one. Neither transplant nor Kasai have 100% success rates (in fact the Kasai success rate is somewhere around 60% even at the best centres, and often lower) and complications can occur even a long time post transplant.
So the fact that Hannah is even here to be two years old is in itself a miracle. The fact that she has had no problems whatsoever since her Kasai is even more mind blowing. I am grateful for every day that we are at home going about our normal business, and nowhere near a hospital. I never imagined when she was discharged at 7 weeks 5 days that she would reach her second birthday without any inpatient stays, not even false alarms.
Hannah means 'Grace of God' and there is no doubt that she reminds us of his grace every day.
Happy birthday, little sunshine girl.
So the fact that Hannah is even here to be two years old is in itself a miracle. The fact that she has had no problems whatsoever since her Kasai is even more mind blowing. I am grateful for every day that we are at home going about our normal business, and nowhere near a hospital. I never imagined when she was discharged at 7 weeks 5 days that she would reach her second birthday without any inpatient stays, not even false alarms.
Hannah means 'Grace of God' and there is no doubt that she reminds us of his grace every day.
Happy birthday, little sunshine girl.
Monday, July 24, 2006
Clinic, good so far
Clinic went well on the whole. Weighing and measuring was excellent as usual; weight 12.4 kg and height 88 cm.
Next we saw Dr McKiernan (the man himself this time!) who is very pleased with how Hannah is doing. His examination found what all the others have; liver palpable about 2-3 cm below ribs, spleen not palpable. Based on this, he speculated that the most likely follow up is normal clinic in 12 months, then ultrasound and endoscopy two years from now. However, he did say this depended on the ultrasound.....
I asked some questions about Hannah's prognosis. Medium term, it is very good. In the last study (the good news is that this is soon to be updated, so I shall keep an eye out for that) done in the UK, 85% of successful Kasai patients had their own liver at age 10. The biggest obstacle to that at this time would be portal hypertension. In the long term, her liver is not likely to last all the ups and downs of a normal lifespan, but exactly how long it will last is impossible to say. They would not want to wait until she was ill before transplant, and would prefer that she would be listed when her own liver begins to cause problems.....in other words, why try and keep her going with a deteriorating liver (and risk time running out) when there is a successful therapy out there.
We also had a talk about Hannah starting playgroup after Christmas, and how much medical info to give the staff there. We decided it best not to alarm them with talk of liver transplants and GI bleeds, unless either of those things become likely. Hannah does not need any special treatment or precautions, and as for illnesses, Dr McKiernan shares the same view as I do, that she is better exposed to things now, while she is pre-transplant and good and healthy. So something along the lines of, "Hannah has a serious liver disease, but she has had successful treatment and is now stable. No particular precautions need to be taken with Hannah while she is in the pre-school setting. Like any other child, if Hannah becomes unwell at pre-school then I should be contacted. If Hannah's medical condition should change, I will inform the pre-school staff immediately in writing."
Following the clinic visit was Hannah's ultrasound. It was nice to see Rachael, my best friend's sister, who is a radiographer there and popped out to see us. The sonographer was the same lady who did Hannah's ultrasound the day before the Kasai, and she is lovely. Hannah was much more cooperative this time, not being a starving, screaming six week old baby who needed a team of people to hold her still - not a very pleasant memory. She was angel baby personified today though, so still, holding her dress up out of the way.
I got a little basic feedback from the sonographer, although obviously will have to wait to hear from Dr McKiernan for detailed analysis. Her blood flow is "OK" and I hope this means she doesn't have portal hypertension, but although her spleen has never been palpable, it is nevertheless enlarged, being 10 cm (the size it should be for a 10 year old) rather than 8 cm.
So, A- at the moment I think, and as I suspected, we await the interpretation of the ultrasound for the true picture of where we are now. If follow up is needed quickly, I will be phoned in the next few days, otherwise a couple of weeks until we get the clinic summary letter.
Of course I will update when I get the ultrasound feedback.
***I was also pleased to spot a sticker on Hannah's file during the visit, saying "This patient is a part of the biliary atresia audit". As far as I am concerned the more BA data there is the better.
***Hannah's urso has been upped to 150 mg (3 ml) twice a day, to try and combat her itching and stay in line with her growth, a move I am pleased about as it is the only thing that has made any difference! Fingers crossed......
Next we saw Dr McKiernan (the man himself this time!) who is very pleased with how Hannah is doing. His examination found what all the others have; liver palpable about 2-3 cm below ribs, spleen not palpable. Based on this, he speculated that the most likely follow up is normal clinic in 12 months, then ultrasound and endoscopy two years from now. However, he did say this depended on the ultrasound.....
I asked some questions about Hannah's prognosis. Medium term, it is very good. In the last study (the good news is that this is soon to be updated, so I shall keep an eye out for that) done in the UK, 85% of successful Kasai patients had their own liver at age 10. The biggest obstacle to that at this time would be portal hypertension. In the long term, her liver is not likely to last all the ups and downs of a normal lifespan, but exactly how long it will last is impossible to say. They would not want to wait until she was ill before transplant, and would prefer that she would be listed when her own liver begins to cause problems.....in other words, why try and keep her going with a deteriorating liver (and risk time running out) when there is a successful therapy out there.
We also had a talk about Hannah starting playgroup after Christmas, and how much medical info to give the staff there. We decided it best not to alarm them with talk of liver transplants and GI bleeds, unless either of those things become likely. Hannah does not need any special treatment or precautions, and as for illnesses, Dr McKiernan shares the same view as I do, that she is better exposed to things now, while she is pre-transplant and good and healthy. So something along the lines of, "Hannah has a serious liver disease, but she has had successful treatment and is now stable. No particular precautions need to be taken with Hannah while she is in the pre-school setting. Like any other child, if Hannah becomes unwell at pre-school then I should be contacted. If Hannah's medical condition should change, I will inform the pre-school staff immediately in writing."
Following the clinic visit was Hannah's ultrasound. It was nice to see Rachael, my best friend's sister, who is a radiographer there and popped out to see us. The sonographer was the same lady who did Hannah's ultrasound the day before the Kasai, and she is lovely. Hannah was much more cooperative this time, not being a starving, screaming six week old baby who needed a team of people to hold her still - not a very pleasant memory. She was angel baby personified today though, so still, holding her dress up out of the way.
I got a little basic feedback from the sonographer, although obviously will have to wait to hear from Dr McKiernan for detailed analysis. Her blood flow is "OK" and I hope this means she doesn't have portal hypertension, but although her spleen has never been palpable, it is nevertheless enlarged, being 10 cm (the size it should be for a 10 year old) rather than 8 cm.
So, A- at the moment I think, and as I suspected, we await the interpretation of the ultrasound for the true picture of where we are now. If follow up is needed quickly, I will be phoned in the next few days, otherwise a couple of weeks until we get the clinic summary letter.
Of course I will update when I get the ultrasound feedback.
***I was also pleased to spot a sticker on Hannah's file during the visit, saying "This patient is a part of the biliary atresia audit". As far as I am concerned the more BA data there is the better.
***Hannah's urso has been upped to 150 mg (3 ml) twice a day, to try and combat her itching and stay in line with her growth, a move I am pleased about as it is the only thing that has made any difference! Fingers crossed......
Thursday, July 20, 2006
Birmingham on Monday
On Monday Hannah has first check up for a year at Birmingham Children's Hospital. We will see Dr McKiernan (hopefully, otherwise a registrar) first, followed by an ultrasound, which will tell us how good her liver is, and whether or not she has portal hypertension.
The signs are at the moment that Hannah will be able to keep her own liver for at least the next several years. I am hoping the ultrasound shows that what is going on inside is just as positive as what we can see from the outside, and what can be gleaned from labs and basic examinations. I shall have a few nerves until the visit is over....and I am going to make the most of our annual visit and turn up with a list of questions.
I shall update with the results on Monday.
The signs are at the moment that Hannah will be able to keep her own liver for at least the next several years. I am hoping the ultrasound shows that what is going on inside is just as positive as what we can see from the outside, and what can be gleaned from labs and basic examinations. I shall have a few nerves until the visit is over....and I am going to make the most of our annual visit and turn up with a list of questions.
I shall update with the results on Monday.
Monday, May 08, 2006
Excellent Clinic Visit!
Hannah's outpatient appointment at the local hospital on Friday went very well indeed! She now weighs 12.2 kg (around 26 lb 12 oz) from the last weight of 10.75 kg which I was worried about back in Feb....so no worries now. Her liver is still enlarged about 2-3 cm below her ribs, but has not got any bigger since November, and her spleen is not palpable. Her blood results were excellent (Bilirubin 8, ALT 25 � woo-hoo!, Alk Phos 275)
So although this was just a basic check up with a general paediatrician, it could not have gone any better, and I am VERY HAPPY! I am going to enjoy these results until we go over to Birmingham for a more detailed check up in the summer.
So although this was just a basic check up with a general paediatrician, it could not have gone any better, and I am VERY HAPPY! I am going to enjoy these results until we go over to Birmingham for a more detailed check up in the summer.
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