Tuesday 29th March
we were back to St Georges today for a blood transfusion, Dr Pelidis had called me the day before to check we were still coming and said she would order the blood so it would be ready for us and would just need to be cross matched and there fore should be quicker!
So the traffic was absolutly horrendous, as soon as we got onto the Hogs back we came to a stand still! So we didnt arrive at the hospital until 11am. Alex dropped me off outside and went to park the car.
I got to the ward and it was heaving, someone had been given Reagans bed so we were sent to the play room to wait. there wasnt any where to sit in the play room it was so busy! (although one family had 5 adults with just one child!!)
Then Alex calls to say that the car park is so full hes had to park out on the road and i had his wallet!
So I had to try and write down all the info (with a crayon!!) to call the parking company to pay for the parking. All the while Reagan is desperatly trying to get down and crawl and empty the contents of my purse while im trying to read my card number. Plus i got cut off twice because of back signal and im not even ment to be on the phone!!!!
About 12.30 they called us in to get her cannulated, they had called in a speciallist this time to use the ultra sound scanner to see the veins. So I had to hold her to me while they did it. they dint use the magic cream because it only makes it harder but the freeze spray they use is just that.....freezing and she screams and screams.
Then they inject a local anesthetic which is a stingy intections and so makes her cry even more.
The first attempt failed and so she had to do the whole thing all over again.
Poor Reagan was so upset, aswell as all that shes being held tightly to keep her still, surrounded by strange people!
By this time it was 1o'clock. They were just making her bed up for her and eve worse than last time it didnt even have sides on it!
All she wanted to do was get down and crawl about but she had to be content with being walked about and cruising around our chairs and the bed.
Then.......someone brings their child in with full blown chicken pox! an you believe it, they didnt even realise, so we were quarantined to our bed and couldnt go any where until it had all been cleaned.
They were so busy we just couldnt gt angry with them and they are all so lovely but again the blood didnt et started until 4.30pm, it takes 4 hrs and after that she had to have her Chicken pox vaccine! oh yes forgot to say that St Georges ordered it in the end for her!
Fortunatly the transfusion went through smoothly and we were moved up to a paed ward at about 7.45pm because the Jungle ward closes at 8pm. Then the transfusion began to play up but it wasnt too much of a set back. Once it had finished at about 8.30pm we just had to wait for them to come and give her her vaccine.
We eventually got home at 10.30pm! Another stupidly long day that was spent trying to keep her occupied, which is getting harder and harder each time.
We're really working hard at getting her walking so at least she can be a bit mobile!
Oh and Dr Pelidis came to see us and we asked her abuout the Phenergan, she said she hadnt really heard of it being given as a sedative (really!!!!) and it can have a bad side effect that is treated with Piriton and so to try piriton first.
She said give her 2.5mls, which is just a normal dose so I couldnt see that doing anything. any way we were to try it for 3 nights and if not then we could go back to Dr Salma and get the Phenergan. I had already bought Phenergan and given it to her an dit had worked but we gave the Piriton ago and it did absolutly nothing at all to help!
So i've been onto Dr Salma to get a prescription, we're still waiting for it but in the mean time im giving her Phenergan any way and she sleeping so much better and has even gone all through the night once!!!
Think i'll go a week and as long as its still working i'll start reducing the dose.
Shes going to have another transfusion on 26th Apr and the 2nd part of the vaccine. Shes then due to see Dr Pelidis the following wk and she'll write her prescription for the steroids then, however, that will only be a couple of wks before we go away, so unless shes prepared to transfuse her before we go any way (which sort of seem silly to start the steroids if she going to be transfused) then we wont start them until we get back!
Weight wise, she was 16lb 5oz and it was 3 wks since her last weigh and she was pretty much the same, so probably lost alittle from the bug she had which had lasted a full wk and she hadnt eaten really either, but she is still on the 2nd centile though!
her length is 69cms, so still right at the bottom centile for height!!!!
Saturday, 2 April 2011
Dr Salma, paediatrician
Thurs 24th March
We made an appt with Dr Salma today to see if she could offer any help with Reagans sleep.
She checked her over as usual and asked about her development and who she was still seeing - dietician, SALT, portage, physio etc. she questioned about what had happened the night previous and was very happy with her.
she said she could prescribe her some Phenergan but wanted to check with Dr Pelidis first just make sure there was no blood related reason for her not to have it.
Obviously this was going to take weeks to get sorted..........great!
We made an appt with Dr Salma today to see if she could offer any help with Reagans sleep.
She checked her over as usual and asked about her development and who she was still seeing - dietician, SALT, portage, physio etc. she questioned about what had happened the night previous and was very happy with her.
she said she could prescribe her some Phenergan but wanted to check with Dr Pelidis first just make sure there was no blood related reason for her not to have it.
Obviously this was going to take weeks to get sorted..........great!
Poorly again! :0(
Wed 23rd March
Reagan woke up with Diarrhoea today, she wouldnt eat a thing and at lunch time she woke up with a temp.
I didnt have access to a themometor so i dont know what it was. i rang the childrens ward and they wanted to see her because it had mucus in it.
we arrived about 1/2 hr afte she had some calpol and her temp was 38.
they decided to do a blood test to be on the safe side.
she had been very sleepy all day and was still at this point, then about 20 mins later she really perked up!! Typical!
Any way her bloods were fine, they showed no infection so just a virus and her HB was 9. this was 3 wks post tranfusion (remember they had given her an extra 20% blood to last her 4 wks) and her retic count was 63!!!! I cant remember it ever being that high!
so anyway, we went home after a couple of hrs because we had an appt with Dr Salma the following morning.
Reagan woke up with Diarrhoea today, she wouldnt eat a thing and at lunch time she woke up with a temp.
I didnt have access to a themometor so i dont know what it was. i rang the childrens ward and they wanted to see her because it had mucus in it.
we arrived about 1/2 hr afte she had some calpol and her temp was 38.
they decided to do a blood test to be on the safe side.
she had been very sleepy all day and was still at this point, then about 20 mins later she really perked up!! Typical!
Any way her bloods were fine, they showed no infection so just a virus and her HB was 9. this was 3 wks post tranfusion (remember they had given her an extra 20% blood to last her 4 wks) and her retic count was 63!!!! I cant remember it ever being that high!
so anyway, we went home after a couple of hrs because we had an appt with Dr Salma the following morning.
Speach and language therapy
Thursday 17th March
Reagan had her first SALT session today. She was reffered back in November because she still wasnt eating and was still so under weight, at the time she had just had a bug and lost over lb in weight too.
As you know though Reagan is now eating well and gaining weight good too. So I thought that nothing much would come from it becasue although she is slightly delayed in speech i dont think its any more than other kids how are just a bit slower.
Any way that was basically what she said, yes shes slightly delayed but not enough for her to warrent therapy. she gave me some tips to try and encourage Reagan and said she didnt need to see her again unless i was concerned. she wont discharge her for 6 mths though just incase!
So all good!!
Reagan had her first SALT session today. She was reffered back in November because she still wasnt eating and was still so under weight, at the time she had just had a bug and lost over lb in weight too.
As you know though Reagan is now eating well and gaining weight good too. So I thought that nothing much would come from it becasue although she is slightly delayed in speech i dont think its any more than other kids how are just a bit slower.
Any way that was basically what she said, yes shes slightly delayed but not enough for her to warrent therapy. she gave me some tips to try and encourage Reagan and said she didnt need to see her again unless i was concerned. she wont discharge her for 6 mths though just incase!
So all good!!
Tuesday, 8 March 2011
Progress 'n stuff!
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!!
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!!
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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