Sorry had to put this on a separate post because i can't continue where i left off from my iPad!
Anyway Peyton was stronger than they thought she would be, the 1st then the 2nd attempt failed. So it was decided that we would leave her be for a while, do me and Alex and get another nurse to have another go at Peyton.
When i went to get Peyton for the last attempt she quite flatly said "No!" any way i managed to convince her without the sweets. She walked round to the room but when she saw the chair she did an about turn and be cane to refuse again! She reminded me of the lion from the wizard of oz!!
Again she screamed but it was pretty quick. She got loads of stickers and had a star sticker on one of her hands like a plaster. On the way home she asked me to take it off, when i went to do it she snatched it away saying "No, just leab it!!" she did this dozens of times before she managed to pluck up the courage to take it off just before bed!!
He results will be about 2 wks, if anyone is a match then the test has to be repeated to be doubly sure. Lets hope its not peyotn eh?
Reagan has been sleeping a little better. The nit before last was pretty amazing. She went down at about 9pm woke at 12.30. I brought he into bed to feed her and woke at 2.38am and put her back to her crib. Then she woke at 6.30am had another feed and went back to sleep for a little while. So that was a stretch of 4 hrs in her own bed! She hasn't done that in months and months.
Last night was back to about every 2 hrs, when she's up more than 3 times i loose track of the times but i think it was about 4 times last night.
We're off to Devon to stay with the inlaws now, so fingers crossed she sleeps well there!!!
Friday 29 October 2010
Blood tissue matching tests
We all had a lovely family trip yesterday to st Georges hospital for blood tests!
It's to see if any of our tissue matches Reagans so we could potentially be a bone marrow donor.
I've been bowled over by the amount of people that have come forward to offer to be tested, and that's without asking anyone!
Sadly though the success rate is not good for DBA unless it's 100% match, which can only come from her siblings. We're not quite sure why they tested me and Alex........to much info to take in! But i was happy to do so just to show solidarity for the kids.
We go there about 2pm and all the kids (except Reagan) got magic cream put on their hands.
Then i sat without them while they filled out the forms. 2 forms each, each needed names, DOBs address, reagans diagnosis, reagans names and DOB, DRs name and relationship.......... So it took some time to do. We ended up hijacking a bed to keep it all on!
DR Pelidis came up too and was there through out which i was impressed with as I'm sure shes a really busy lady. She has to sign all the forms too.
Kennedy went first, I took Peyton in too so she would feel happier about her turn. Kennedy ended up having it done from her arm so the cream was not necessary after all! She didn't even flinch.
Then Kaylum, then Cade. Poor Cade, the first attempt didn't work so she had to have another go in the other arm. He smiled through out the whole thing but his little feet were fidgeting so i think it was more a nervous smile. But he made no fuss what so ever, even though the lady gave him permission to shout!!!
Peyton chose stickers for them all to have and was perfectly happy to climb up and have her turn..........until another nurse came in and held her arm still! She was stron
It's to see if any of our tissue matches Reagans so we could potentially be a bone marrow donor.
I've been bowled over by the amount of people that have come forward to offer to be tested, and that's without asking anyone!
Sadly though the success rate is not good for DBA unless it's 100% match, which can only come from her siblings. We're not quite sure why they tested me and Alex........to much info to take in! But i was happy to do so just to show solidarity for the kids.
We go there about 2pm and all the kids (except Reagan) got magic cream put on their hands.
Then i sat without them while they filled out the forms. 2 forms each, each needed names, DOBs address, reagans diagnosis, reagans names and DOB, DRs name and relationship.......... So it took some time to do. We ended up hijacking a bed to keep it all on!
DR Pelidis came up too and was there through out which i was impressed with as I'm sure shes a really busy lady. She has to sign all the forms too.
Kennedy went first, I took Peyton in too so she would feel happier about her turn. Kennedy ended up having it done from her arm so the cream was not necessary after all! She didn't even flinch.
Then Kaylum, then Cade. Poor Cade, the first attempt didn't work so she had to have another go in the other arm. He smiled through out the whole thing but his little feet were fidgeting so i think it was more a nervous smile. But he made no fuss what so ever, even though the lady gave him permission to shout!!!
Peyton chose stickers for them all to have and was perfectly happy to climb up and have her turn..........until another nurse came in and held her arm still! She was stron
Thursday 21 October 2010
Blood transfusion #3
We arrived at Frimley park hospital at around 9.45am,they put some amatop cream on her hands and feet to numb the skin ready to be canulated.
They took her in to take some blood and put the canula in at about 10.45am, I think it was 2 student drs, but not too sure. Anyway they failed to get it in her hand but had clearly got the vein because when he removed it to give up and try else where it really bled. Someone else had a go and eventually got it in her foot.
Normally she'll lie on the bed absolutely no bother at all and obviously she gets upset if it hurts but today she immediately looked unsure about it all and started crying before they even started :0(
And just like last time when they tried her foot she seemed to still be able feel it despite the cream, so she ended up getting Really upset, its so horrid to see, especially when you cant just scoop her up and cuddle her!
In true Reagan style though she got over it very quickly bless her.
So then we went home and waited for them to call when the blood was each.
They called at 1.45pm and we arrived at the hospital about 2.30pm.
They flushed the canula to check it was working, as they always do, and it was fine but she didn't like it and it made her cry again. It's flushed with salt water so it feels cold going through the vein, she obviously didn't like how it felt!!
So they started the blood but she didn't like it either, then it began to play up a little and was saying it was blocked and beeping etc. Every time the nurse held reagans foot it stopped!!! Eventually it sorted itself out but Reagan still wasn't very happy about it. She was getting tired so I fed her to calm her down and eventually she fell asleep. They have to do regular obs on her (blood pressure and temp, incase she's having a reaction to the blood) so she was woken up by them doing that!!!! Ggggrrr!!!!!
I think either the vein in her foot is smaller or mire sensitive or she's just mire aware now coz she really didn't like it. She kept lifting her foot and was pulling, or trying to pull the tube.
By 6.30pm we were done, she'd had 90mls of red blood cells and was the pinkest I'd ever seen her!!!
You remember she had bloods done yesterday and her hb was 7.9 and her reticulocytes were just 1?? Today her hb was 7.5!! That's a fast drop in less than 24 hrs.
So let's see if she gets a good nights sleep tonight. She went down at about 7.30-7.45 and woke at 10 but is already up again now!!! Currently feeding while I type 1 handed!!
Going to put her back to bed now so goodnight from me and goodnight from pinked baby Reagan!!!
They took her in to take some blood and put the canula in at about 10.45am, I think it was 2 student drs, but not too sure. Anyway they failed to get it in her hand but had clearly got the vein because when he removed it to give up and try else where it really bled. Someone else had a go and eventually got it in her foot.
Normally she'll lie on the bed absolutely no bother at all and obviously she gets upset if it hurts but today she immediately looked unsure about it all and started crying before they even started :0(
And just like last time when they tried her foot she seemed to still be able feel it despite the cream, so she ended up getting Really upset, its so horrid to see, especially when you cant just scoop her up and cuddle her!
In true Reagan style though she got over it very quickly bless her.
So then we went home and waited for them to call when the blood was each.
They called at 1.45pm and we arrived at the hospital about 2.30pm.
They flushed the canula to check it was working, as they always do, and it was fine but she didn't like it and it made her cry again. It's flushed with salt water so it feels cold going through the vein, she obviously didn't like how it felt!!
So they started the blood but she didn't like it either, then it began to play up a little and was saying it was blocked and beeping etc. Every time the nurse held reagans foot it stopped!!! Eventually it sorted itself out but Reagan still wasn't very happy about it. She was getting tired so I fed her to calm her down and eventually she fell asleep. They have to do regular obs on her (blood pressure and temp, incase she's having a reaction to the blood) so she was woken up by them doing that!!!! Ggggrrr!!!!!
I think either the vein in her foot is smaller or mire sensitive or she's just mire aware now coz she really didn't like it. She kept lifting her foot and was pulling, or trying to pull the tube.
By 6.30pm we were done, she'd had 90mls of red blood cells and was the pinkest I'd ever seen her!!!
You remember she had bloods done yesterday and her hb was 7.9 and her reticulocytes were just 1?? Today her hb was 7.5!! That's a fast drop in less than 24 hrs.
So let's see if she gets a good nights sleep tonight. She went down at about 7.30-7.45 and woke at 10 but is already up again now!!! Currently feeding while I type 1 handed!!
Going to put her back to bed now so goodnight from me and goodnight from pinked baby Reagan!!!
Wednesday 20 October 2010
Off to st Georges again
Reagan was 9mths old on Friday (5 days ago) where that time has gone is anybodys guess!!
So we went to see Dr Pelidis again today because after i saw dr Salma last tue I contacted her to tell her the results of the bloods and to express my concern that Reagan has spent such a long time with a low hb.
Today her hb was 7.6 so slowly dropping (remember it should be at least 12) and her retic count is just 1!!!! It was 78 last wk and in someone with a normal hb it should be about 100, if you have a low hb the. It should be higher!! It's what gives you an indication of how many blood cells are going to be made.
Dr Pelidis said that we've pretty much exhausted everything except DBA, and so she thouhgt it a good idea to test us and the kids to see if we woukd be a match for Reagans bone marrow. This can be done with a blood test. So we're all off to st Georges next wed (which is half term luckily) for a family blood test! The ward really will be full that day huh?
This isn't to say that we have made the decision to give Reagan a bone marrow transplant, it's just so that we know if anyone is a match and weather or not it would be possible.
Of course we have no idea how she will respond to the steroids yet, which she I'll probably go on in around 3-4 mths. It usually takes about a mth for any response and then some time to see if the dose can be reduced to a safe level, so the trial normally lasts for 3 mths before it is decided if she is responding.
I again said that i was concerned that she was happy for reagans hb to go so low and she said that they have allowed it to for now while they are investigating her etc to see what her body would do and to see if it would go back up. But now that we pretty much have her diagnosed she will just go on regular transfusions, probably 1 a month to begin with.
About 3 mins after we walked back throughout the door from the hospital dr Pelidis called with the blood results and said she that she'd call Frimley for the to call me and arrange a transfusion for her.
They then called a few mins later and asked me to take her in tomorrow morning. I'll go straight from dropping the kids at school, they'll take blood for matching and put her canula in, we'll then come home for a few hours while they get the blood etc. Once they have it all sorted we'll go back in for the transfusion.
I'm so relieved that she's getting it, it seems so unfair that she should struggle more than necessary.
I'm also hoping that she will be able to sleep abit more soundly too! At the moment she is sleeping in her crib for some of the night but for bouts of 20mins - 1.5 hrs! Which is bloody knackering! It's worse than when she wasn't leaving our bed!!
So I'll fill you in on how the transfusion goes tomorrow, with a bit of luck it won't be a repeat of last time!!
So we went to see Dr Pelidis again today because after i saw dr Salma last tue I contacted her to tell her the results of the bloods and to express my concern that Reagan has spent such a long time with a low hb.
Today her hb was 7.6 so slowly dropping (remember it should be at least 12) and her retic count is just 1!!!! It was 78 last wk and in someone with a normal hb it should be about 100, if you have a low hb the. It should be higher!! It's what gives you an indication of how many blood cells are going to be made.
Dr Pelidis said that we've pretty much exhausted everything except DBA, and so she thouhgt it a good idea to test us and the kids to see if we woukd be a match for Reagans bone marrow. This can be done with a blood test. So we're all off to st Georges next wed (which is half term luckily) for a family blood test! The ward really will be full that day huh?
This isn't to say that we have made the decision to give Reagan a bone marrow transplant, it's just so that we know if anyone is a match and weather or not it would be possible.
Of course we have no idea how she will respond to the steroids yet, which she I'll probably go on in around 3-4 mths. It usually takes about a mth for any response and then some time to see if the dose can be reduced to a safe level, so the trial normally lasts for 3 mths before it is decided if she is responding.
I again said that i was concerned that she was happy for reagans hb to go so low and she said that they have allowed it to for now while they are investigating her etc to see what her body would do and to see if it would go back up. But now that we pretty much have her diagnosed she will just go on regular transfusions, probably 1 a month to begin with.
About 3 mins after we walked back throughout the door from the hospital dr Pelidis called with the blood results and said she that she'd call Frimley for the to call me and arrange a transfusion for her.
They then called a few mins later and asked me to take her in tomorrow morning. I'll go straight from dropping the kids at school, they'll take blood for matching and put her canula in, we'll then come home for a few hours while they get the blood etc. Once they have it all sorted we'll go back in for the transfusion.
I'm so relieved that she's getting it, it seems so unfair that she should struggle more than necessary.
I'm also hoping that she will be able to sleep abit more soundly too! At the moment she is sleeping in her crib for some of the night but for bouts of 20mins - 1.5 hrs! Which is bloody knackering! It's worse than when she wasn't leaving our bed!!
So I'll fill you in on how the transfusion goes tomorrow, with a bit of luck it won't be a repeat of last time!!
Friday 15 October 2010
Paed appt
We had an appt on Tue this week to see Dr Salma, we haven't seen her since mid July.
It was just for to catch up and check Reagan over again.
She was weighed and measured, her weight is beginning to slip down again, she was 13lb8oz and 65cm long.
Dr Salma said she thought Reagan looked better than she remembered seeing her before (not so pale) I disagreed though!!!
She referred her for physio because her upper body is still pretty weak, this is probably. because her body has to work harder than most babies her age and so development get over looked!!
She was also referred for some kind of learning support to help stimulate her. Even though her brain isn't effected because of everything she will become tired and concentrating will be difficult so she'll need some extra help.
Her blood was taken and her HB was 7.9 and her retic count was 78. So it's dropped a little but not too much.
I spoke to the parent support for DBA, and again received so much info, it's so great to have her to talk to.
She said that they never let her daughters HB go below 9!!! So where as i thought mY e Reagan wasn't quite as severe as other sufferers, if she was transfused when she she got down to 9 it would be done probably as often as every 6 wkish.
She told me of other signs/symptoms to look for that tell us she isn't tolerating such a low HB, and said it seems odd to let her go so low when surely little and often is kinder surely. At the moment she is being transfused then being allowed to go right down to then be transfused right back up. It's all peaks and troughs rather than more evened out.
I called Dr Pilidis to talk to her about it and we're going to see her on Wed morning. So I'll let you know the outcome.
It was just for to catch up and check Reagan over again.
She was weighed and measured, her weight is beginning to slip down again, she was 13lb8oz and 65cm long.
Dr Salma said she thought Reagan looked better than she remembered seeing her before (not so pale) I disagreed though!!!
She referred her for physio because her upper body is still pretty weak, this is probably. because her body has to work harder than most babies her age and so development get over looked!!
She was also referred for some kind of learning support to help stimulate her. Even though her brain isn't effected because of everything she will become tired and concentrating will be difficult so she'll need some extra help.
Her blood was taken and her HB was 7.9 and her retic count was 78. So it's dropped a little but not too much.
I spoke to the parent support for DBA, and again received so much info, it's so great to have her to talk to.
She said that they never let her daughters HB go below 9!!! So where as i thought mY e Reagan wasn't quite as severe as other sufferers, if she was transfused when she she got down to 9 it would be done probably as often as every 6 wkish.
She told me of other signs/symptoms to look for that tell us she isn't tolerating such a low HB, and said it seems odd to let her go so low when surely little and often is kinder surely. At the moment she is being transfused then being allowed to go right down to then be transfused right back up. It's all peaks and troughs rather than more evened out.
I called Dr Pilidis to talk to her about it and we're going to see her on Wed morning. So I'll let you know the outcome.
Friday 8 October 2010
ECG and some results
Reagan will be 9 mths in a wks time, she still refuses to eat solid food almost completely, although we had a few breakthroughs this wk.
On Tuesday she ate an entire yogurt (albeit it a small one!!!) on Wednesday she ate 1/3 of a fish finger(healthy I know) AND a whole yogurt and last night she had home made carbonara minus the bacon and a whole yogurt again. So small steps.......
She still wakes several times a night, or sometimes doesn't even make it to her own bed!
Today I had a call out of the blue to take her FCC for an ECG! Which was odd I thought. Turns out that when her scan was done a. Few wks ago an ECG was meant to have been arranged too but never was. And the cardiologist from southampton was at Frimley so they decided to call her in and if it looked bad they could pass it to him for his opinion. It was 'satisfactory' though so that was good.
Then later today i got a call from dr plilidis saying that they have looked at the gene RPS19 to see if it is mutated and thus confirming DBA, however, its fine. This is the most common gene mutation that effects around 25-30% of DBA sufferers. Now they look at the the genes. So we need to wait some more!
Also the report from her hand xray says that her thumbs are normal. She has a copy of her chest xray now and is waiting for that to be looked at.
Over and out!!
On Tuesday she ate an entire yogurt (albeit it a small one!!!) on Wednesday she ate 1/3 of a fish finger(healthy I know) AND a whole yogurt and last night she had home made carbonara minus the bacon and a whole yogurt again. So small steps.......
She still wakes several times a night, or sometimes doesn't even make it to her own bed!
Today I had a call out of the blue to take her FCC for an ECG! Which was odd I thought. Turns out that when her scan was done a. Few wks ago an ECG was meant to have been arranged too but never was. And the cardiologist from southampton was at Frimley so they decided to call her in and if it looked bad they could pass it to him for his opinion. It was 'satisfactory' though so that was good.
Then later today i got a call from dr plilidis saying that they have looked at the gene RPS19 to see if it is mutated and thus confirming DBA, however, its fine. This is the most common gene mutation that effects around 25-30% of DBA sufferers. Now they look at the the genes. So we need to wait some more!
Also the report from her hand xray says that her thumbs are normal. She has a copy of her chest xray now and is waiting for that to be looked at.
Over and out!!
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