Not sure if you noticed the ungodly hr of the last post??
Hhhmmmmm not impressed!
It's prompted me to give you a little update on Reagan herself!
She now has 3 teeth! 2 at the bottom and one at the top. She is shuffling everywhere now and gaining speed! She has now started to some times crawl properly, it's not very often at all but it is proof that her upper body is strengthening. She'll also sometimes go up onto her hands and feet, very amusing!
I had to lower the cot because she fell out!!! Poor poor baby, she ended up with a nasty bruise on her forehead. She stands up the very second she is awake, so no chance of falling back to sleep in that position eh!?!?
Which brings me to the sleeping again! Last night she was up 3 times, I'm not sure what the first time was but it was then about 3.30 and again at 5.50 when She decided it was time to get up for the day (hence ms being on her at stupid o'clock)
That is a very good night for her! Especially as I went to sleep before she'd woken up at all, meaning the first time she woke up was after midnight.
However, she is usually very bad, the night before i lost count it was easily over 5 times. If I fight and try to settle her with out feeding her she will sleep for maybe 3-5 mins (just enough for you to maybe falling back to sleep yourself) and this will continue for somewhere between an hr and an hr and half! Before she might finally give in and sleep for about 40 mins.........now is it worth all the effort??? And then at this time it is quite some time since she was last fed and I will think at it's feasible for her to actually need to be fed now!!!
So........we've decided to take her to her paediatrician, Dr Salma, and see if there is anything she can do to help. She must be an extreme case surely???
She's almost 14mths now and has never slept a night through. Her longest is 6 hrs...... God I'd give a limb for a 6 hr stretch!!!!!
Her eating is still regally fab! She loves being on her feet (all size 2 of them!) and being walked around! I'd quite like her to walk because when we go into hospital with her she's confined to her bed or us walking her around. She obviously cant crawl on the floor.
She can drink from a beaker herself, very cute! Cruises around the furniture, she's saying a couple of words- kind of!! And shakes her head!! She hates her walker......biggest waste of £50 that was. Think it's because she still cant do anything in it, despite it being on the lowest setting she cant really reach the floor.
Well thats all I can think of for now!!
Tuesday, 8 March 2011
Clinic appt with DR Pelidis
We went to see Dr Pelidid yesterday (Tue 8th March) just for a clinic appt.
Reagan weighs 16lb 5oz, so has gained half lb in 4 wks which is fab at this age and means she has crept just a little bit further up from the 4th centile on the the growth chart and a little closer to the the 9th!! Not far off being half way between both i reackon!! In fact Dr Pelidis made not comment on her weight at all whic I take to mean there is no issue!! Hurrah....at bloody last eh?
Ive had quite a few people comment over th last wk on how she's grown.
Reagan gets her viracella (chicken pox) vaccine next Monday, Pelidis thought it best that it was in her system for a few wks before starting steroids so it was decided that we would do one more transfusion then start them a wk or so after that.
Because she had more blood this time we're leaving it 4 wks before giving her another transfusion, so that will be on 29th March. We're going to st Georges again because it was kinder on Reagan and Pelidis said that because she has already had one there that her info is recorded now and and the blood would be ordered the day before she goes in, so it SHOULD be quicker (providing the cross match is OK -this is where the test her blood with that of the donors blood to check for a reaction before giving it to her)
So the steroids should be starting in the first wk of Apr (just as Alex gets home from a wk in Orlando with work!)
We don't go back to see her for another 8 wks now. It's always such a nightmare getting the appt made. They're always full so they say that they have to book then next available appt and write us in on the over booking form and pass it to his manager who will over book the clinic and contact us with a time etc. Well last time it didn't work at all, we heard nothing and got nowhere when trying to book it.
So this time I suggested he book in an appt for 16 wks time (so the appt after next) so that we've already got that one sorted and still write us in on the over booking form.........god it was hard work trying to explain this to him!!! I think we got there but I'll be surprised if I get a call/letter with an appt for 8 wks!!!
When we were in last wk for her transfusion the nurse looking after her said we might be able to claim back our petrol and get the carpark paid for each time we come.
When we went to ask it turns out we can! I just had to take in reagans DLA form (I don't think I've posted that she gets disability allowance have I? I'll check )
Anyway i took it yesterday and after her nearly having heart attack due to stressing herself out so much we got re-embedded £90!! For the last 3 mths and the the carpark for yesterday. I was really pleased with that!! Each time we go we will get about £18 i think!
Reagan weighs 16lb 5oz, so has gained half lb in 4 wks which is fab at this age and means she has crept just a little bit further up from the 4th centile on the the growth chart and a little closer to the the 9th!! Not far off being half way between both i reackon!! In fact Dr Pelidis made not comment on her weight at all whic I take to mean there is no issue!! Hurrah....at bloody last eh?
Ive had quite a few people comment over th last wk on how she's grown.
Reagan gets her viracella (chicken pox) vaccine next Monday, Pelidis thought it best that it was in her system for a few wks before starting steroids so it was decided that we would do one more transfusion then start them a wk or so after that.
Because she had more blood this time we're leaving it 4 wks before giving her another transfusion, so that will be on 29th March. We're going to st Georges again because it was kinder on Reagan and Pelidis said that because she has already had one there that her info is recorded now and and the blood would be ordered the day before she goes in, so it SHOULD be quicker (providing the cross match is OK -this is where the test her blood with that of the donors blood to check for a reaction before giving it to her)
So the steroids should be starting in the first wk of Apr (just as Alex gets home from a wk in Orlando with work!)
We don't go back to see her for another 8 wks now. It's always such a nightmare getting the appt made. They're always full so they say that they have to book then next available appt and write us in on the over booking form and pass it to his manager who will over book the clinic and contact us with a time etc. Well last time it didn't work at all, we heard nothing and got nowhere when trying to book it.
So this time I suggested he book in an appt for 16 wks time (so the appt after next) so that we've already got that one sorted and still write us in on the over booking form.........god it was hard work trying to explain this to him!!! I think we got there but I'll be surprised if I get a call/letter with an appt for 8 wks!!!
When we were in last wk for her transfusion the nurse looking after her said we might be able to claim back our petrol and get the carpark paid for each time we come.
When we went to ask it turns out we can! I just had to take in reagans DLA form (I don't think I've posted that she gets disability allowance have I? I'll check )
Anyway i took it yesterday and after her nearly having heart attack due to stressing herself out so much we got re-embedded £90!! For the last 3 mths and the the carpark for yesterday. I was really pleased with that!! Each time we go we will get about £18 i think!
Another nightmare transfusion (#7)
Tuesday 1st March saw us back to St Georges for blood transfusion #7.
we chose to go to st georges because it had taken so many attempts to get the cannula in last time and the ward at st georges is a surgical ward, it's purely to prepare for surgery or for I.vs or transfusions. So they're putting cannulas in all day long. Plus they have a ultra sound scanner they can use to see the veins if necessary.
We arrived at 10AM, they were really busy and it took ages to get round to putting her cannula in. We decided not to use the numbing cream because it makes the skin puffy and red which can make it even harder to see the veins, plus it normally takes so many attempts that they end up having to try places that haven't got any cream on by which time she is really upset and in pain any way!
It took just 2 attempts this time, one in the crook of each arm. She couldn't see any decent veins at all and just went by feel! They didn't need to use the ultra sound machine.
It was now midday so we went off to get some lunch while they tested her blood and got the new blood.
So it was a 3 wks exactly since her last transfusion, I can't remember exactly but I think last time it was 3.5 wks and her HB was 7.6?? Anyway this time it was 8.7 her retic count was 6 (last time it was 20 something) so she had lasted pretty well this time and was just perfect for a transfusion.... We want to keep her above 9. Also this time they did a ferratin level(this measures the level of iron in her blood) Dr Pelidis said that iron chelation would probably have to be started after about 10 transfusions.
So we re given a copy of the the pathology report this time, which was great because it also had this ferratin level thingy, however, I bloody well managed to loose it!! Ggggrrr (not once but twice! I'll get to how a bit later)
Her ferratin level should be between 6-140 and hers is now 367, I don't know how that measures in terms of how many transfusions shes had.
It took FOREVER for them to get the blood and the transfusion didn't even start until 5pm!! Bloody nightmare. And to make it worse Reagan had a bed, not a cot, so she could fall out! And the wast is made up of 12 beds with very basic chairs! At least at Frimley park we get a side room and more comfy chairs!!! plus the ward at frimley is so much bigger so ww can walk her up and down and change the scenery a bit.
This time she was having 120mls of blood, she should only have 100mls but because she hasn't been lasting very long and Dr Pelidis would rather she had a bit more time between transfusions it was decided to give a bit more. The risk of this is a strain on her heart but she was fine, of course she is monitored throughout and if anything was to seem wrong they would stop.
About 30 mins before the blood was finished (which takes 3 hrs to go through) i noticed a red pin prick type rash coming up on here face, then her arm (not the one with the cannula in) on the back of her neck. Eventually a few on her leg and nappy area. Also on the same arm she had some purple spots and some really tiny, what looked like, blood spots.
Just as the nurse was doing the final OBs on her i said about it and she decided to contact a doctor to check her over, just incase.
It was now 8.15pm and the ward is meant to close at 8pm. The Dr said she would about 45 mins. 1.5 hrs later she came and said that she wasn't at all worried about the red rash but was slightly concerned about the purple one. It didn't blanch (disappear when pressed) which is always a worry. She was completely fine in hself, no temp or anything, smiling the lot (despite being so absolutely exhausted due to it being 9.30pm now, and i had kept her awake, thinking the dr would be there by 8.45)
So it was decided that we would stay in over night for them to observe her to be sure.
Needless to say, she ws comp,eatery fine. It was caused,we think, by the tournequay being a little too tight when trying to insert the cannula, causing lots of small bruises and just as they looked, blood spots.
This was pretty much confirmed a few days later when the purple spots went brown!!!!
When We were taken from the day ward up to the paediatric ward they used my copy of the pathology report to hand over, that was how i lost it the first time! But I managed to get them to print me another one off.
We eventually got home at 1pm, we hadn't brushed our teeth or washed or anything since the morning before!! Nice!!
So......... We went to st georges thinking it would be better than frimley!!.........hhhhmmmm! Well it was easier on reagan though! However that might be h last transfusion..........
we chose to go to st georges because it had taken so many attempts to get the cannula in last time and the ward at st georges is a surgical ward, it's purely to prepare for surgery or for I.vs or transfusions. So they're putting cannulas in all day long. Plus they have a ultra sound scanner they can use to see the veins if necessary.
We arrived at 10AM, they were really busy and it took ages to get round to putting her cannula in. We decided not to use the numbing cream because it makes the skin puffy and red which can make it even harder to see the veins, plus it normally takes so many attempts that they end up having to try places that haven't got any cream on by which time she is really upset and in pain any way!
It took just 2 attempts this time, one in the crook of each arm. She couldn't see any decent veins at all and just went by feel! They didn't need to use the ultra sound machine.
It was now midday so we went off to get some lunch while they tested her blood and got the new blood.
So it was a 3 wks exactly since her last transfusion, I can't remember exactly but I think last time it was 3.5 wks and her HB was 7.6?? Anyway this time it was 8.7 her retic count was 6 (last time it was 20 something) so she had lasted pretty well this time and was just perfect for a transfusion.... We want to keep her above 9. Also this time they did a ferratin level(this measures the level of iron in her blood) Dr Pelidis said that iron chelation would probably have to be started after about 10 transfusions.
So we re given a copy of the the pathology report this time, which was great because it also had this ferratin level thingy, however, I bloody well managed to loose it!! Ggggrrr (not once but twice! I'll get to how a bit later)
Her ferratin level should be between 6-140 and hers is now 367, I don't know how that measures in terms of how many transfusions shes had.
It took FOREVER for them to get the blood and the transfusion didn't even start until 5pm!! Bloody nightmare. And to make it worse Reagan had a bed, not a cot, so she could fall out! And the wast is made up of 12 beds with very basic chairs! At least at Frimley park we get a side room and more comfy chairs!!! plus the ward at frimley is so much bigger so ww can walk her up and down and change the scenery a bit.
This time she was having 120mls of blood, she should only have 100mls but because she hasn't been lasting very long and Dr Pelidis would rather she had a bit more time between transfusions it was decided to give a bit more. The risk of this is a strain on her heart but she was fine, of course she is monitored throughout and if anything was to seem wrong they would stop.
About 30 mins before the blood was finished (which takes 3 hrs to go through) i noticed a red pin prick type rash coming up on here face, then her arm (not the one with the cannula in) on the back of her neck. Eventually a few on her leg and nappy area. Also on the same arm she had some purple spots and some really tiny, what looked like, blood spots.
Just as the nurse was doing the final OBs on her i said about it and she decided to contact a doctor to check her over, just incase.
It was now 8.15pm and the ward is meant to close at 8pm. The Dr said she would about 45 mins. 1.5 hrs later she came and said that she wasn't at all worried about the red rash but was slightly concerned about the purple one. It didn't blanch (disappear when pressed) which is always a worry. She was completely fine in hself, no temp or anything, smiling the lot (despite being so absolutely exhausted due to it being 9.30pm now, and i had kept her awake, thinking the dr would be there by 8.45)
So it was decided that we would stay in over night for them to observe her to be sure.
Needless to say, she ws comp,eatery fine. It was caused,we think, by the tournequay being a little too tight when trying to insert the cannula, causing lots of small bruises and just as they looked, blood spots.
This was pretty much confirmed a few days later when the purple spots went brown!!!!
When We were taken from the day ward up to the paediatric ward they used my copy of the pathology report to hand over, that was how i lost it the first time! But I managed to get them to print me another one off.
We eventually got home at 1pm, we hadn't brushed our teeth or washed or anything since the morning before!! Nice!!
So......... We went to st georges thinking it would be better than frimley!!.........hhhhmmmm! Well it was easier on reagan though! However that might be h last transfusion..........
Tuesday, 15 February 2011
Portage, physio and general update
Today was her latest appt with portage and physio, I haven't yet blogged how amazing Reagan has done with her development lately!
She's done so well since Nov time really but her biggest news is that she is CRAWLING!! well she kinda bum shuffles with her legs to one side and also uses her hands! Its very similar to how Peyton got about!
She started on 28th Jan, she varied at first between all fours and how she goes now! She woud only do two in succession at first but soon she gave up on the all fours and favoured the unusual way!!
Sleep wise, I can't remember if I've blogged this or not, she now goes to bed at a. Ormolu. Ed time...........I know! It's amazing! So she goes up between about 7.30 and 8 she gets put down awake and thats it! She doesn't yet do this during the day tho, don't know why!
It still varies how much she gets up but usually between 3-5 times..........I know it's still quite shit but such a huge improvement on 7-10!!! Plus she is on her own bed and not ours! On the down side she does think that 6-6.30 is an acceptable time to wake for the day! *sigh* also when she wakes up, and i mean before her eyes have even rurally opened she sits up! Then of course that just wakes her up fully and she can't get back to sleep!if only it was acceptable to strap them into their cots like we do pushchairs and highchairs!!!!!!
She also pulls her self to her knees and has even once pulled herself to standing! She says 'hello' she learnt this in the hospital last wk whilst having her transfusion, she was playing with a toy phone and i puked it up and said hello into it and she copied! Clever girl....very cute of course.
She was saying 'bye' but doesn't seem to do that any more. When she drops something she says 'uh-oh'.
And over the last day or two she is really enjoying being on her feet, yesterday she even cruised a little along the sofa! When i try to put her down on the floor she keeps her legs straight to stand on! Yet she still doesn't like her walker...but then she still cant go anywhere in it!
Anyway when the ladies from portage and physio came today they were incredibly impressed with her. Portage said they were happy not to see her again but were leaving the lines of communication open just incase i needed them again and physio said that they would like to see her at least one more time but not for another 2 mths and that would probably be the last time. They were only he for half hr, last time it was an hr.
Also today she mastered a little step both down and up! She was very pleased with herself, and quite rightly so I thought!
She's done so well since Nov time really but her biggest news is that she is CRAWLING!! well she kinda bum shuffles with her legs to one side and also uses her hands! Its very similar to how Peyton got about!
She started on 28th Jan, she varied at first between all fours and how she goes now! She woud only do two in succession at first but soon she gave up on the all fours and favoured the unusual way!!
Sleep wise, I can't remember if I've blogged this or not, she now goes to bed at a. Ormolu. Ed time...........I know! It's amazing! So she goes up between about 7.30 and 8 she gets put down awake and thats it! She doesn't yet do this during the day tho, don't know why!
It still varies how much she gets up but usually between 3-5 times..........I know it's still quite shit but such a huge improvement on 7-10!!! Plus she is on her own bed and not ours! On the down side she does think that 6-6.30 is an acceptable time to wake for the day! *sigh* also when she wakes up, and i mean before her eyes have even rurally opened she sits up! Then of course that just wakes her up fully and she can't get back to sleep!if only it was acceptable to strap them into their cots like we do pushchairs and highchairs!!!!!!
She also pulls her self to her knees and has even once pulled herself to standing! She says 'hello' she learnt this in the hospital last wk whilst having her transfusion, she was playing with a toy phone and i puked it up and said hello into it and she copied! Clever girl....very cute of course.
She was saying 'bye' but doesn't seem to do that any more. When she drops something she says 'uh-oh'.
And over the last day or two she is really enjoying being on her feet, yesterday she even cruised a little along the sofa! When i try to put her down on the floor she keeps her legs straight to stand on! Yet she still doesn't like her walker...but then she still cant go anywhere in it!
Anyway when the ladies from portage and physio came today they were incredibly impressed with her. Portage said they were happy not to see her again but were leaving the lines of communication open just incase i needed them again and physio said that they would like to see her at least one more time but not for another 2 mths and that would probably be the last time. They were only he for half hr, last time it was an hr.
Also today she mastered a little step both down and up! She was very pleased with herself, and quite rightly so I thought!
Clinic with Dr Pelidis
Tues 8th Feb
Appt with Dr Pelidis today, we went over the events of the day before and she said she'd talk to the surgeon about a port-a-cath, this is a semi permanent line that's put in under her arm I think. They can take blood from it and give transfusions into it. Normally you have to be over 10kg to have one but shes going to see what she can do because Reagan seems to have such a hard time. Other wise the other option is a hick man witch is an external line,which would mean she could swim (not sure about bathing but don't think so) and its open to infection. S its not really something we would probably consider.
We decided that she should have an HB over 9 and so she is to be transfused again in 3 wks time. She will also have her last lot of immunisations that wk and will then be ready to start on the steroids.
We're going back to see Dr Pelidis in 4 wks time.
We asked if we could get her transfused at St Georges this time to se if she has an easier time of it. She said that it was a long way for us to come but we're still sure that it will take less than the 10.5hrs it took at Frimley Park yesterday!
Tomorrow she will have her MMR and boosters!
Oh and she weighed 15lb 12oz! Still gaining weight fabulously!! Her length was 67cm.
Appt with Dr Pelidis today, we went over the events of the day before and she said she'd talk to the surgeon about a port-a-cath, this is a semi permanent line that's put in under her arm I think. They can take blood from it and give transfusions into it. Normally you have to be over 10kg to have one but shes going to see what she can do because Reagan seems to have such a hard time. Other wise the other option is a hick man witch is an external line,which would mean she could swim (not sure about bathing but don't think so) and its open to infection. S its not really something we would probably consider.
We decided that she should have an HB over 9 and so she is to be transfused again in 3 wks time. She will also have her last lot of immunisations that wk and will then be ready to start on the steroids.
We're going back to see Dr Pelidis in 4 wks time.
We asked if we could get her transfused at St Georges this time to se if she has an easier time of it. She said that it was a long way for us to come but we're still sure that it will take less than the 10.5hrs it took at Frimley Park yesterday!
Tomorrow she will have her MMR and boosters!
Oh and she weighed 15lb 12oz! Still gaining weight fabulously!! Her length was 67cm.
Monday, 7 February 2011
Transfusion #6
At least I think it is....... I'm loosing count now!!
What a bloody nightmare it has been again. After the last one being so straight forward.
We decided on Friday that she was looking like she needed a transfusion, it had previously been decided that she would have her blood tested tomorrow at St Georges, however, if we did that it means adding on a few hrs to the appt which is at 1.30 and so we would be fighting the traffic home then. Also it would be Wed before she got transfused.
So i rang the ward yesterday (Sunday) and they said to come in about 3pm because at 5pm there would be less drs about.
So i did, she had one go and failed but she said she could only see 2 good veins and wanted a senior dr to do it incase she stuffed it up i guess!!
So i waited for about 1.5hrs and he walked in as his pager went off. He went to answer it and about another 1/2nd later they said that he had been called to a poorly baby in SCBU and would be at least another 2hrs.
So I decided to just come back this morning and get it all done in one shot! (famous last words)
We arrived at 9am about 10am a lovely dr came to put the line in......no joy but she did get some blood out.
So off we went to wait for the results to come back, sure enough she needed a transfusion, her HB was 7.6 and her retic count was 28 (which is good)
By the time we got back onto the ward the dr was going into a meeting but the blood wasn't going to be arriving till about 2pm.
At 2pm she tried again to get a line in. We told her that we were going to be discussing putting a port in tomorrow. She told us to exaggerate how bad it was, she said "tell them it took like 8 times today before we could get a line in"
She tried a couple more times then said she was going to ask someone else to have a go. Someone else came and tried a couple of times then the original dr tried again..........on the 8th attempt they finally got a line in!! In her foot.
I guess we don't need to exaggerate tomorrow then!!!!!
She has wiggly veins that spasm really well, so they get the vein no problem but can't thread it, the cannula only gets in so far then it spasms and it can't go in anymore. Plus now that she has some lovely chubbiness, it means the veins are even harder to see! (she weighed 15lb 12oz today :0))))
She was so upset, she cried and cried so much she was practically asleep before they'd even finished.
But of course she got over it no time!!
The blood went up at about 3.30pm in the end. And here we are now.........she has another 2hrs to go but she's peacefully asleep now, getting some well earned rest.
What a bloody nightmare it has been again. After the last one being so straight forward.
We decided on Friday that she was looking like she needed a transfusion, it had previously been decided that she would have her blood tested tomorrow at St Georges, however, if we did that it means adding on a few hrs to the appt which is at 1.30 and so we would be fighting the traffic home then. Also it would be Wed before she got transfused.
So i rang the ward yesterday (Sunday) and they said to come in about 3pm because at 5pm there would be less drs about.
So i did, she had one go and failed but she said she could only see 2 good veins and wanted a senior dr to do it incase she stuffed it up i guess!!
So i waited for about 1.5hrs and he walked in as his pager went off. He went to answer it and about another 1/2nd later they said that he had been called to a poorly baby in SCBU and would be at least another 2hrs.
So I decided to just come back this morning and get it all done in one shot! (famous last words)
We arrived at 9am about 10am a lovely dr came to put the line in......no joy but she did get some blood out.
So off we went to wait for the results to come back, sure enough she needed a transfusion, her HB was 7.6 and her retic count was 28 (which is good)
By the time we got back onto the ward the dr was going into a meeting but the blood wasn't going to be arriving till about 2pm.
At 2pm she tried again to get a line in. We told her that we were going to be discussing putting a port in tomorrow. She told us to exaggerate how bad it was, she said "tell them it took like 8 times today before we could get a line in"
She tried a couple more times then said she was going to ask someone else to have a go. Someone else came and tried a couple of times then the original dr tried again..........on the 8th attempt they finally got a line in!! In her foot.
I guess we don't need to exaggerate tomorrow then!!!!!
She has wiggly veins that spasm really well, so they get the vein no problem but can't thread it, the cannula only gets in so far then it spasms and it can't go in anymore. Plus now that she has some lovely chubbiness, it means the veins are even harder to see! (she weighed 15lb 12oz today :0))))
She was so upset, she cried and cried so much she was practically asleep before they'd even finished.
But of course she got over it no time!!
The blood went up at about 3.30pm in the end. And here we are now.........she has another 2hrs to go but she's peacefully asleep now, getting some well earned rest.
Friday, 28 January 2011
Dr Pelidis clinic appt
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.
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.
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