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..........
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