HAPPY BIRTHDAY HANNAH!!!
When you have a child with a chronic illness, birthdays are a strange entity. A reminder of the miracle that is in front of you, a lesson that nothing in life is to be taken for granted. A time for great joy, but also a time when the fragility of life is markedly obvious.
One year ago today, I posted with the wonderful news that Hannah had made it to two years old, a milestone that she would never have reached without life saving surgery. Not only that, but she reached that milestone by hurtling full on towards it, not by stumbling along. And now, we have had another whole year of amazing and wonderful health. The future will always be uncertain, but there will never be any doubt about the blessings that we have had. Thank you God for Hannah, for everything she has taught me, for the many tears I have cried and for the many times when she has brought me sweet and unbridled joy. Thank you for my miracle, and help me not to take it for granted.
Sunday, August 26, 2007
Saturday, August 25, 2007
Blood results from Tuesday
Hannah's blood results have come back and they are pretty stable....some in the right direction and some in the wrong direction, but overall pretty good :)
I phoned up for them so didn't get the full panel, they should come with the letter. Here are the ones I have, with commentary.
Albumin 45 (previous result 40) Albumin is a protein made in the liver, and if it isn't working well enough the albumin will be low. This is actually Hannah's highest EVER albumin, so great news!
Alk Phos 677 (previous result 1057) This can measure bile duct damage or bone damage, but can be elevated in children when their bones are growing. I'm very relieved it has dropped down so much! It's back within BCH's normal range for Hannah's age group (250-850), although still higher than Hannah's usual, so hopefully it has all been down to her growing so much recently and will continue to drop.
ALT 68 (previous result 36) ALT measures liver cell damage. Not so happy with this one, because as you can see it has jumped up since the last test to above normal range (less than 45). It is also the highest Hannah's ALT has been for over 2 years. However, it is still a good value for someone with chronic liver disease. Hoping it was a one off jump and not the start of an upwards trend.
AST 67 (previous result 56) AST also measures liver cell damage but as it is found in other parts of the body it is less specific to the liver than ALT. Again not overjoyed with the upward trend and above normal value, but like the ALT it is really not THAT high.
Bilirubin 7 (previous result 5) Low bili means no jaundice! This has hovered between 5 and 8 from a couple of months post Kasai. Normal is less than 20, so this is my favourite result. Pre Kasai my little yellow baby had a bilirubin of over 200!
Gamma GT 51 (previous result 57) Gamma GT is very specific to bile duct obstruction. Hannah's GGT is very good for someone with a bile duct disorder. The similar results mean I can use one of my favourite words - stable.
PT 11 seconds (previous result 11 seconds) This is the most important indicator of Hannah's ability to clot blood, and it is completely normal. This reaffirms that Hannah's liver is doing a very good job!
APTT 39 seconds (previous result 35 seconds) This is another blood clotting indicator. The last value of 35 was at the upper limit of normal, and the fact it is now prolonged means that her liver probably is not producing quite enough of certain clotting factors. On it's own though, it is not a concern, as long as the PT stays normal.
I phoned up for them so didn't get the full panel, they should come with the letter. Here are the ones I have, with commentary.
Albumin 45 (previous result 40) Albumin is a protein made in the liver, and if it isn't working well enough the albumin will be low. This is actually Hannah's highest EVER albumin, so great news!
Alk Phos 677 (previous result 1057) This can measure bile duct damage or bone damage, but can be elevated in children when their bones are growing. I'm very relieved it has dropped down so much! It's back within BCH's normal range for Hannah's age group (250-850), although still higher than Hannah's usual, so hopefully it has all been down to her growing so much recently and will continue to drop.
ALT 68 (previous result 36) ALT measures liver cell damage. Not so happy with this one, because as you can see it has jumped up since the last test to above normal range (less than 45). It is also the highest Hannah's ALT has been for over 2 years. However, it is still a good value for someone with chronic liver disease. Hoping it was a one off jump and not the start of an upwards trend.
AST 67 (previous result 56) AST also measures liver cell damage but as it is found in other parts of the body it is less specific to the liver than ALT. Again not overjoyed with the upward trend and above normal value, but like the ALT it is really not THAT high.
Bilirubin 7 (previous result 5) Low bili means no jaundice! This has hovered between 5 and 8 from a couple of months post Kasai. Normal is less than 20, so this is my favourite result. Pre Kasai my little yellow baby had a bilirubin of over 200!
Gamma GT 51 (previous result 57) Gamma GT is very specific to bile duct obstruction. Hannah's GGT is very good for someone with a bile duct disorder. The similar results mean I can use one of my favourite words - stable.
PT 11 seconds (previous result 11 seconds) This is the most important indicator of Hannah's ability to clot blood, and it is completely normal. This reaffirms that Hannah's liver is doing a very good job!
APTT 39 seconds (previous result 35 seconds) This is another blood clotting indicator. The last value of 35 was at the upper limit of normal, and the fact it is now prolonged means that her liver probably is not producing quite enough of certain clotting factors. On it's own though, it is not a concern, as long as the PT stays normal.
Wednesday, August 22, 2007
No varices!!!!
Yes, that's right, no varices!!!! I am so happy!
Today went really well. Hannah was a little star from start to finish, and viewed everything as a new adventure. She was very impressed by the sticky plastic covering the little blobs of numbing cream on her hands in preparation for the cannula. She held her hands out in front of her for about half an hour and wouldn't use them, and she kept prodding at the squishy bits with the cream underneath. She got through the whole day without shedding a tear, even when the cannula was put in and taken out (although I think it helped a lot that we wouldn't let her look). She recovered very quickly from her anaesthetic too.....after 10 minutes she was drinking juice, after 25 minutes she was scoffing sandwiches, crisps and a chocolate bar, and after and hour she was asking if she could go to the hospital outdoor play area.
It was about an hour and a half afterwards that the doctor came and told us there were NO VARICES!!!! I have had this worry in the back of my mind for so long that it is hard to believe it has been put to rest for now. Praise God!
We are still left with a nagging little worry. The doctor decided to take some biopsy samples of the gastrointestinal tract during the endoscopy. We are not entirely clear on the reasoning for this, whether it is routine or not, and what they may or may not be looking for. I am not good at coming up with questions when I have surprise news, so I didn't say much apart from 'I see' which I don't really. The biopsy results will take a while to come back (possibly a couple of weeks) and Dr McKiernan is away at the moment so I'm not sure when we will be able to find out more. I don't have her blood results (I did ask and it was agreed to, but the doc obviously didn't remember and neither did I until after we left) so I will be ringing tomorrow to get those, and will see if I can find anything out then.
No varices! No varices! No varices!
Today went really well. Hannah was a little star from start to finish, and viewed everything as a new adventure. She was very impressed by the sticky plastic covering the little blobs of numbing cream on her hands in preparation for the cannula. She held her hands out in front of her for about half an hour and wouldn't use them, and she kept prodding at the squishy bits with the cream underneath. She got through the whole day without shedding a tear, even when the cannula was put in and taken out (although I think it helped a lot that we wouldn't let her look). She recovered very quickly from her anaesthetic too.....after 10 minutes she was drinking juice, after 25 minutes she was scoffing sandwiches, crisps and a chocolate bar, and after and hour she was asking if she could go to the hospital outdoor play area.
It was about an hour and a half afterwards that the doctor came and told us there were NO VARICES!!!! I have had this worry in the back of my mind for so long that it is hard to believe it has been put to rest for now. Praise God!
We are still left with a nagging little worry. The doctor decided to take some biopsy samples of the gastrointestinal tract during the endoscopy. We are not entirely clear on the reasoning for this, whether it is routine or not, and what they may or may not be looking for. I am not good at coming up with questions when I have surprise news, so I didn't say much apart from 'I see' which I don't really. The biopsy results will take a while to come back (possibly a couple of weeks) and Dr McKiernan is away at the moment so I'm not sure when we will be able to find out more. I don't have her blood results (I did ask and it was agreed to, but the doc obviously didn't remember and neither did I until after we left) so I will be ringing tomorrow to get those, and will see if I can find anything out then.
No varices! No varices! No varices!
Tuesday, August 21, 2007
It's the big day tomorrow!
I can't believe how fast the last few weeks have gone. At least the waiting is now over and this time tomorrow at least we will know one way or the other.
We went over to Birmingham for the bloods today. It seemed a bit weird turning up with no forms for the bloods; I found myself thinking we would get there and they would say "Hannah WHO???" Of course the forms were waiting in phlebotomy. Amazingly we went almost straight in (number 10 was in there and we were number 11) which I think was a lot to do with my choice of going at lunchtime when there weren't any clinics running.
Hannah has bloods frequently enough that she knows what to expect, but not frequently enough to make them a matter of course. It was so much easier when she was a baby and just angry that they were sticking a needle in her and then it was forgotten. She told me in no uncertain terms beforehand that she doesn't like getting her arm checked. She was fine until we got in there and then she started struggling and saying "I don't want you to do it". We just got on with it as quickly as possible, and while the needle was in her arm she kept saying "PLEASE take it out now, PLEASE" through floods of tears. As soon as it was over and she was introduced to a singing lobster and got her stickers she was all smiles again.
We stayed at the hospital for lunch and spent some time after at the outdoor play area. Hannah has the view that the hospital is really quite a fun place (apart from the arm checking) and I want to promote that as much as possible. She doesn't remember all that she went through as a baby of course and things have been so stable since that she has not had the opportunity to build up any fear.
Everything is ready for the extraordinarily early start tomorrow. We have read 'Katie goes to the hospital' (for an ear operation) several times and Hannah understands that she won't be allowed to eat or drink and that she will be put to sleep while the doctors take pictures of the inside of her tummy with a camera. She asked if I would leave her on her own at the hospital and I said I would be with her all the time, except I wouldn't be allowed in the room while they take the pictures. She is also prepared that she may have to stay overnight (hopefully not, but nothing is a given). I've packed for an overnight stay as if I didn't that would guarantee we would have to. And I checked out the location of the medical day care centre so we know exactly where we are going.
So, we're as ready as we will ever be. Hopefully the next time I update I will be able to say Hannah's labs are great and most importantly that she has no varices.
We went over to Birmingham for the bloods today. It seemed a bit weird turning up with no forms for the bloods; I found myself thinking we would get there and they would say "Hannah WHO???" Of course the forms were waiting in phlebotomy. Amazingly we went almost straight in (number 10 was in there and we were number 11) which I think was a lot to do with my choice of going at lunchtime when there weren't any clinics running.
Hannah has bloods frequently enough that she knows what to expect, but not frequently enough to make them a matter of course. It was so much easier when she was a baby and just angry that they were sticking a needle in her and then it was forgotten. She told me in no uncertain terms beforehand that she doesn't like getting her arm checked. She was fine until we got in there and then she started struggling and saying "I don't want you to do it". We just got on with it as quickly as possible, and while the needle was in her arm she kept saying "PLEASE take it out now, PLEASE" through floods of tears. As soon as it was over and she was introduced to a singing lobster and got her stickers she was all smiles again.
We stayed at the hospital for lunch and spent some time after at the outdoor play area. Hannah has the view that the hospital is really quite a fun place (apart from the arm checking) and I want to promote that as much as possible. She doesn't remember all that she went through as a baby of course and things have been so stable since that she has not had the opportunity to build up any fear.
Everything is ready for the extraordinarily early start tomorrow. We have read 'Katie goes to the hospital' (for an ear operation) several times and Hannah understands that she won't be allowed to eat or drink and that she will be put to sleep while the doctors take pictures of the inside of her tummy with a camera. She asked if I would leave her on her own at the hospital and I said I would be with her all the time, except I wouldn't be allowed in the room while they take the pictures. She is also prepared that she may have to stay overnight (hopefully not, but nothing is a given). I've packed for an overnight stay as if I didn't that would guarantee we would have to. And I checked out the location of the medical day care centre so we know exactly where we are going.
So, we're as ready as we will ever be. Hopefully the next time I update I will be able to say Hannah's labs are great and most importantly that she has no varices.
Tuesday, August 14, 2007
One week to go
This time next week Hannah will have had her bloods done and we will be gearing up for the endoscopy. I will be so thankful to get it over with and know one way or the other. I so want everything to be ok and to return to our normal sense of denial for another year (barring scary unexplained fevers, but I have learned to live with those). A flu jab and the pointless check up at the local hospital will not do too much damage to that.
I have only admitted this to one person before, but ever since Hannah's kasai I have had a horrible irrational feeling that portal hypertension will be her downfall, if you like, that her liver will keep on coping (I feel sure Hannah's liver has exactly the same fighting spirit that she has herself) but the PH will be what causes her complications or sends her to transplant. Nothing at all to back that up, so depending on what happens in the future that feeling will either be proven to be an incredible case of mum's intuition, or more likely a ridiculous paranoia. I really want it to be debunked for at least the immediate future.
I have only admitted this to one person before, but ever since Hannah's kasai I have had a horrible irrational feeling that portal hypertension will be her downfall, if you like, that her liver will keep on coping (I feel sure Hannah's liver has exactly the same fighting spirit that she has herself) but the PH will be what causes her complications or sends her to transplant. Nothing at all to back that up, so depending on what happens in the future that feeling will either be proven to be an incredible case of mum's intuition, or more likely a ridiculous paranoia. I really want it to be debunked for at least the immediate future.
Friday, August 03, 2007
Clinic letter and full list of bloods
"Height: 99.1 cm (91st centile)
Weight 15.0 kg (75th centile)
It was lovely to see Hannah in the outpatient clinic on 10 July 2007. She is full of life and energy and she looks extraordinarily well and is clearly making excellent physical and developmental progress.
Her ultrasound has shown a significant degree of splenomegaly so we discussed surveillance endoscopy. I will arrange an admission for this.
We also discussed what to do if she should have oesophageal varices and I will give the parents some information on a clinical trial of prophylactic banding.
In the normal course of things I would try and stop her Ursodeoxycholic Acid but in view of the itch I think it is reasonable to continue with this.
Investigations:
Haemoglobin = 11.9
White count = 5.7
Neutrophils = 1.7
Platelets = 263
PT = 11 secs
APTT = 35 secs
Fibrinogen = 2.1
Sodium = 139
Potassium = 4.0
Urea = 3.6
Creatinine = 40
Calcium = 2.62
Phosphate = 1.60
Magnesium = 0.84
Bilirubin = 5
Unconjugated bilirubin = 5
Alk. Phos. = 1057
ALT = 36
AST = 56
Gamma GT = 57
Albumin = 40
Total Protein = 70
She will be admitted on 22 August as a day case for endoscopy and will be reviewed here in one year's time or sooner if necessary."
Weight 15.0 kg (75th centile)
It was lovely to see Hannah in the outpatient clinic on 10 July 2007. She is full of life and energy and she looks extraordinarily well and is clearly making excellent physical and developmental progress.
Her ultrasound has shown a significant degree of splenomegaly so we discussed surveillance endoscopy. I will arrange an admission for this.
We also discussed what to do if she should have oesophageal varices and I will give the parents some information on a clinical trial of prophylactic banding.
In the normal course of things I would try and stop her Ursodeoxycholic Acid but in view of the itch I think it is reasonable to continue with this.
Investigations:
Haemoglobin = 11.9
White count = 5.7
Neutrophils = 1.7
Platelets = 263
PT = 11 secs
APTT = 35 secs
Fibrinogen = 2.1
Sodium = 139
Potassium = 4.0
Urea = 3.6
Creatinine = 40
Calcium = 2.62
Phosphate = 1.60
Magnesium = 0.84
Bilirubin = 5
Unconjugated bilirubin = 5
Alk. Phos. = 1057
ALT = 36
AST = 56
Gamma GT = 57
Albumin = 40
Total Protein = 70
She will be admitted on 22 August as a day case for endoscopy and will be reviewed here in one year's time or sooner if necessary."
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