On Wed 19 th Jan we took Reagan to st Georges to see Dr Pelidis.
We talked about putting Reagan onto steroids in the next mth or so, we will go back in 3 wks, check her blood, probably transfuse her then start the steroids a coup,e of wks after that. This allows the HB to drop a little and allow the steroids some room to boost it back up but not too low that if the steroids don't work she'll be in need of a transfusion again.
So she will initially start on a high dose which is likely to give her mood swings (although it might not....we can hope) it will increase her appetite and she will likely gain a fair bit of weight in a short time period. The trial will be unto 8 wks long, after some time the dose will be reduced gradually until either she is on allow safe dose and her HB is at a good level or the steroids are deemed a failure in which case it's back to transfusions with a view to doing a transplant in the next yr or two.
Before starting the steroids she has to have all her immunisations and a flu jab. We've also decided to immunise against chicken pox because it can be rather serious for her to get them while on steroids.
We also spoke about putting a port of cath in, so she doesn't have to have a canula put in every time and while on the steroids she will need weekly blood tests. This will be discussed on more detail at the next appt.
Friday 28 January 2011
Monday 17 January 2011
Southampton hospital
So today we took Reagan to southamton hospital to see a cardiac specialist, to check her heart.
To recap, she has a leaky valve.....the rest of it i really don't understand but i do know that at Frimley park hospital they really didn't think it was anything to worry about at all and were only referring her to southampton because of all her other problems! Just to be on the safe side.
Anyway, she get weighed and her height is done. She has gained another 2oz since Thurs (4days) and her. Height was 66.5cm which is now off the chart! Typical...just as she gets back on the chart for her weight she drops off for her height!!
Anyway, she had the echocardiogram, which once again she was so good for! The lady commented several times about how good she was and how very laid back she was.....such a good girl (if only she' sleep!!)
We went in to see the consultant and he said that everything is fine. Yes she still has all the things that we thought but they're all innocent and he was happy to discharge her...hooray good news! One less thing to worry about eh?
The only time he may see her again is if she doesn't respond to steroids and is transfuse dependant, after about 18-24 mths, I think, she would start chelation therapy, which will remove the iron form her body because she would have too much.......your body burns up your iron stores when it makes blood, of course hers doesn't so she doesn't use up any iron ad then she gets more iron each time she has a transfusion. So eventually she will have too much.
Too much iron will effect her organs, namely her heart and liver. So she would have iron chelation to remove it but her hear and lungs would still need to be monitored.
BUT.....good news today!
She's having her final lot of immunisations tomorrow because shes going back to see Dr Pelidis on Wed and we will be discussing steroids. She needs to be fully up to date with her immunisations before Ginger on steroids because it will effect her immune system.
She'll be due her MMR soon too and i also will be asking about immunising against chicken pox. They do this as standard in the US so hopefully i can get it sorted for her to have it because it could be quite serious for her to get them while she's on steroids. Peyton hasn't had them yet either and now that shes at pre-school she's more likely to pick them up!
To recap, she has a leaky valve.....the rest of it i really don't understand but i do know that at Frimley park hospital they really didn't think it was anything to worry about at all and were only referring her to southampton because of all her other problems! Just to be on the safe side.
Anyway, she get weighed and her height is done. She has gained another 2oz since Thurs (4days) and her. Height was 66.5cm which is now off the chart! Typical...just as she gets back on the chart for her weight she drops off for her height!!
Anyway, she had the echocardiogram, which once again she was so good for! The lady commented several times about how good she was and how very laid back she was.....such a good girl (if only she' sleep!!)
We went in to see the consultant and he said that everything is fine. Yes she still has all the things that we thought but they're all innocent and he was happy to discharge her...hooray good news! One less thing to worry about eh?
The only time he may see her again is if she doesn't respond to steroids and is transfuse dependant, after about 18-24 mths, I think, she would start chelation therapy, which will remove the iron form her body because she would have too much.......your body burns up your iron stores when it makes blood, of course hers doesn't so she doesn't use up any iron ad then she gets more iron each time she has a transfusion. So eventually she will have too much.
Too much iron will effect her organs, namely her heart and liver. So she would have iron chelation to remove it but her hear and lungs would still need to be monitored.
BUT.....good news today!
She's having her final lot of immunisations tomorrow because shes going back to see Dr Pelidis on Wed and we will be discussing steroids. She needs to be fully up to date with her immunisations before Ginger on steroids because it will effect her immune system.
She'll be due her MMR soon too and i also will be asking about immunising against chicken pox. They do this as standard in the US so hopefully i can get it sorted for her to have it because it could be quite serious for her to get them while she's on steroids. Peyton hasn't had them yet either and now that shes at pre-school she's more likely to pick them up!
Gone AWOL!!
God, its been sooooooo long since I've updated, sorry!
Now i have to work backwards again!
So the last time I updated I was taking Reagan to see Dr Salma the next day.
23/11/10 went to see Dr Salma, her first words were "she looks pale, when was she last tested?"
So i told her she had been done the day before etc, we came to the conclusion that it was just because she has been so poorly. TBH I'm not convinced that the test wasn't incorrect!
Reagan was weighed again, I just couldn't believe she had lost so much and wanted to be sure. She weighed 12lb13oz, so had lost more than I thought! A loss of 1lb 1oz.
In light of this and the fact that Reagan still doesn't eat solids Dr Salma suggested that she might be a candidate for a gastric tube going in through her stomach to feed her directly, just as a temporary measure until she picks up and is eating.
I was sure she would pick up, other than this set back she has followed her line quite nicely for a while now.
So shes referred her to Southampton hospital for s gastrostomy insertion (as yet we haven't heard anything.)
I asked about direct access to F1 (the children's ward at Frimley park) and she agreed to sort it out for us.
She said she'd write to the blood donation service to enquire about having our own group of donors for Reagan.
She referred her to speech and language therapy because shes not eating and so her muscles wont be developing properly which may result in a delay with her speech. Both the dietician and the physiotherapist also asked about this!
I asked when i should next get Reagans blood tested.....she said to leave it until after Christmas!!! Lol i just nodded and thought "yea right!"
25th Nov the lady from portage came over to asses Reagan. She went through a check list of things Reagan can and cant do. She said Reagan qualifies for the service and that she works very closely with physio and sometimes they would come together. Julie would visit and play with Reagan to see what she can/can't do and give us goals to work towards.
8th Dec I took Reagan for a blood test. We didn't want her getting too low, she had her christening in a few days time and in a couple of wks it was Christmas. Her HB was 7.5 and so she was transfused on 9th dec, 7 wks since her last one.
It was a bloody nightmare (literally!!) when we finally got the canula in and got going Reagan pulled the canula out after just 7mls of blood. The nurse tried as hard as she coiled to save it but in the end they had to put another canula in. Then when they started the machine kept saying there was air in the tube even though there wasn't. No matt what the nurse did it still Said it. She changed the machine and everything.
Eventually the next shift came on and another took over and managed to get it sorted but by now the blood had been out of the fridge for some time and she wasn't going to be able to get the full amount. So they hd to speed it up a little and she had to go with out the last 16mls.
Reagan slept from when they managed to get it up and running again, through all the observations the canula coming out, getting dressed to go out in the cold, into the car and home into bed!! She slept for a total of 7hrs straight.....amazing. It was midnight by the time we left the hospital.
At this Reagan was on her 2nd lot of antibiotics for a chest infection, she was I'll for 6 wks solid poor thing.Reagan weighed in at 13lb 11oz, so had very nearly put back on what she had lost! Yay.
Wed 15th dec Reagan had her 2nd lot of physio. Last time she slumped into her self when you picked her up, and she couldn't sit. This time she was much sturdier when lifted and could now sit for some time alone (she was 11mths to the day) she had begun to twist and lean to get a toy while sitting.
Her homeworkd was to work on the twisting and leaning. When she was lying on her back, to turn her onto her side and lift by her shoulder to encourage her to use her other arm to push her self up and strengthen her u pper body. Also to get her onto all fours and tummy tome!
We went away for new yr and while we were there ereagan really ate well and on the last day she even ate some rice crispies!! The very first cereal shes ever eaten!!
Since then Reagan has been eating really well and is now on 3 meals a day. She will still only eat rice crispies for cereal though!
A few days after returning i decided yo try Reagan sleeping hoer tummy, it made a huge improvement. She had progressively got worse again and spent everynight in out bed feeding about 7-9 times anight. Every time i tried to put her in her crib she woke up and just cried! But just a few dyad after putting her on her tummy her pattern was something like this, bed up in her bed at
About 8pm sleep till about 11-12 then every 3 -4 hrsish. She has spent every night since in her own bed!! It wasn't long till she was lifting herself up on to her hands though (which was very clever) and even got on to all fours her self, so i was worried she would soon pull herself up on the side of the crib. So on 11th jan, just 4 days short of her first birthday, she went into a cot!!
We decided to get her blood tested again the same wk, she had become pale and was sweating a lot. I decided that it was silly to take her for a test and then go back and have a canula put in. And so i used the direct access card for the ward and asked them to put a canula in at the same time as doing the blood test. This was done on wed 13th Jan.
Her HB was 7.2 and she went in the next morning for her transfusion. Tis time it was all very straight forward and we were in and out in just four and half hrs. 3 of which it takes for the transfusion to through! 5wks to the day since her last one.
They also weighed her, she was 15lbs on The dot!! So a great gain, about 4oz per wk since her last weigh in!
Fri 14th jan we had Anuska - physiotherapist and Julie - portage over. By now Reagan is nearly getting on to all fours herself from sitting. She can almost weight bare on her feet and can play with a toy while on her tummy!
Her homework is to work on getting from tummy to sitting and visa versa, getting her spend time on all fours.
And portage homework is to practice getting her to give you things willingly and to put things into a pot.
An hr after they left i was putting her to bed and she only went and sat up!!! I couldn't believe it. She has now done it a few times, I even caught it on camera.
Her sleep pattern is getting worse again though! We're lucky if she goes 3 hrs now! She'll still go down at a decent time though. I can spend over an hr trying to get her back to sleep sometimes, she'll go off for a few mins and thats it unless i feed her! What the hell do you do???
So i think that brings us up to date.
TTFN!!
Now i have to work backwards again!
So the last time I updated I was taking Reagan to see Dr Salma the next day.
23/11/10 went to see Dr Salma, her first words were "she looks pale, when was she last tested?"
So i told her she had been done the day before etc, we came to the conclusion that it was just because she has been so poorly. TBH I'm not convinced that the test wasn't incorrect!
Reagan was weighed again, I just couldn't believe she had lost so much and wanted to be sure. She weighed 12lb13oz, so had lost more than I thought! A loss of 1lb 1oz.
In light of this and the fact that Reagan still doesn't eat solids Dr Salma suggested that she might be a candidate for a gastric tube going in through her stomach to feed her directly, just as a temporary measure until she picks up and is eating.
I was sure she would pick up, other than this set back she has followed her line quite nicely for a while now.
So shes referred her to Southampton hospital for s gastrostomy insertion (as yet we haven't heard anything.)
I asked about direct access to F1 (the children's ward at Frimley park) and she agreed to sort it out for us.
She said she'd write to the blood donation service to enquire about having our own group of donors for Reagan.
She referred her to speech and language therapy because shes not eating and so her muscles wont be developing properly which may result in a delay with her speech. Both the dietician and the physiotherapist also asked about this!
I asked when i should next get Reagans blood tested.....she said to leave it until after Christmas!!! Lol i just nodded and thought "yea right!"
25th Nov the lady from portage came over to asses Reagan. She went through a check list of things Reagan can and cant do. She said Reagan qualifies for the service and that she works very closely with physio and sometimes they would come together. Julie would visit and play with Reagan to see what she can/can't do and give us goals to work towards.
8th Dec I took Reagan for a blood test. We didn't want her getting too low, she had her christening in a few days time and in a couple of wks it was Christmas. Her HB was 7.5 and so she was transfused on 9th dec, 7 wks since her last one.
It was a bloody nightmare (literally!!) when we finally got the canula in and got going Reagan pulled the canula out after just 7mls of blood. The nurse tried as hard as she coiled to save it but in the end they had to put another canula in. Then when they started the machine kept saying there was air in the tube even though there wasn't. No matt what the nurse did it still Said it. She changed the machine and everything.
Eventually the next shift came on and another took over and managed to get it sorted but by now the blood had been out of the fridge for some time and she wasn't going to be able to get the full amount. So they hd to speed it up a little and she had to go with out the last 16mls.
Reagan slept from when they managed to get it up and running again, through all the observations the canula coming out, getting dressed to go out in the cold, into the car and home into bed!! She slept for a total of 7hrs straight.....amazing. It was midnight by the time we left the hospital.
At this Reagan was on her 2nd lot of antibiotics for a chest infection, she was I'll for 6 wks solid poor thing.Reagan weighed in at 13lb 11oz, so had very nearly put back on what she had lost! Yay.
Wed 15th dec Reagan had her 2nd lot of physio. Last time she slumped into her self when you picked her up, and she couldn't sit. This time she was much sturdier when lifted and could now sit for some time alone (she was 11mths to the day) she had begun to twist and lean to get a toy while sitting.
Her homeworkd was to work on the twisting and leaning. When she was lying on her back, to turn her onto her side and lift by her shoulder to encourage her to use her other arm to push her self up and strengthen her u pper body. Also to get her onto all fours and tummy tome!
We went away for new yr and while we were there ereagan really ate well and on the last day she even ate some rice crispies!! The very first cereal shes ever eaten!!
Since then Reagan has been eating really well and is now on 3 meals a day. She will still only eat rice crispies for cereal though!
A few days after returning i decided yo try Reagan sleeping hoer tummy, it made a huge improvement. She had progressively got worse again and spent everynight in out bed feeding about 7-9 times anight. Every time i tried to put her in her crib she woke up and just cried! But just a few dyad after putting her on her tummy her pattern was something like this, bed up in her bed at
About 8pm sleep till about 11-12 then every 3 -4 hrsish. She has spent every night since in her own bed!! It wasn't long till she was lifting herself up on to her hands though (which was very clever) and even got on to all fours her self, so i was worried she would soon pull herself up on the side of the crib. So on 11th jan, just 4 days short of her first birthday, she went into a cot!!
We decided to get her blood tested again the same wk, she had become pale and was sweating a lot. I decided that it was silly to take her for a test and then go back and have a canula put in. And so i used the direct access card for the ward and asked them to put a canula in at the same time as doing the blood test. This was done on wed 13th Jan.
Her HB was 7.2 and she went in the next morning for her transfusion. Tis time it was all very straight forward and we were in and out in just four and half hrs. 3 of which it takes for the transfusion to through! 5wks to the day since her last one.
They also weighed her, she was 15lbs on The dot!! So a great gain, about 4oz per wk since her last weigh in!
Fri 14th jan we had Anuska - physiotherapist and Julie - portage over. By now Reagan is nearly getting on to all fours herself from sitting. She can almost weight bare on her feet and can play with a toy while on her tummy!
Her homework is to work on getting from tummy to sitting and visa versa, getting her spend time on all fours.
And portage homework is to practice getting her to give you things willingly and to put things into a pot.
An hr after they left i was putting her to bed and she only went and sat up!!! I couldn't believe it. She has now done it a few times, I even caught it on camera.
Her sleep pattern is getting worse again though! We're lucky if she goes 3 hrs now! She'll still go down at a decent time though. I can spend over an hr trying to get her back to sleep sometimes, she'll go off for a few mins and thats it unless i feed her! What the hell do you do???
So i think that brings us up to date.
TTFN!!
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