WHAT DOES THIS MEAN??

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Offline Christine Mary

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  • Mother of Lauryn, who has Thal Major
WHAT DOES THIS MEAN??
« on: March 28, 2007, 07:50:50 PM »
I called lauryns hemo. to ask if we can do the cross/match and transfuison on the same day. (a few weeks ago, he wanted to do the cross/match on mon, and THEN the tx tues or wed)..
Anyway, his nurse called back and said that would be fine and we can try it...BUT.. if the IV dosent work then we have to go back!?
What do you think this means? Is he going to push for the port again? Especially so soon after one failed try?  i dont want to call him again, b/c i know he is so busy,and besides it takes a few days for him to respond... should i just address it when we go mon? and stand my ground, and demand they take care of her ALL IN ONE DAY???

Do i have them keep trying the same day to get a vein until she is transfused? This makes no sense to me?Why would one day make such a difference from the day before?
please help.

Lauryn's Mom

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Offline Sharmin

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Re: WHAT DOES THIS MEAN??
« Reply #1 on: March 28, 2007, 10:34:03 PM »
Hi Christine,

We always go in the day before a transfusion for a cross match because it takes them time to get
a match.  Sometimes it takes only one try to get the IV started sometimes it takes more tries.  When my son was little sometimes they had to start it on his foot.  After the age of 2 he stopped fussing and things got better. 

Watching them put the IV on, especially when your child is fussing is very difficult, but if you go in there with the right attitude the child gets over it very quickly.  Be sympathetic to your child, but do not make it seem like pity.  Children are resilient and can be incredibly brave, your little girl can do it - believe in yourself and her.  Our pediatrician told us that we need make our son believe that he can take a few pokes for his health, because of this attitude he has learned to become responsible for his own health and takes great interest in it.

Don't let anyone scare you.  Yes, the first few times will be difficult but before long it will get easier.  I hope this helps.

Sharmin
Sharmin

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Offline Christine Mary

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Re: WHAT DOES THIS MEAN??
« Reply #2 on: March 29, 2007, 01:28:09 AM »
thanks for your kind words sharmin. you always make me feel so much better/relieved.

my question is actually this,,,, he says if the iv doesnt work and stay in her arm ( or wherever they tx her)... we have to back the next day. do u know why he would say that?
should i split the cross/match and tx into 2 days?

Lauryn's Mom

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Offline Sharmin

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Re: WHAT DOES THIS MEAN??
« Reply #3 on: March 29, 2007, 03:09:23 AM »
I personally like to split the transfusion and cross match otherwise you will be waiting around for a long time. 
Sometimes it can take hours to find a good match.  You also don't want to be tired before they do the IV as this will make it harder on you and your little one.  You want yourself and your daughter as relaxed as your can be before they do her IV.  The first few times are very very difficult, the babies veins are hard to find and babies get very upset.  Our first few times were very hard, my husband and I both cried the first time our son got his IV.  We have come a long way since then.  But your patience and attitude will determine how soon she relaxes afterward, and the way she reacts to her IVs in the future.  I know how you feel at this time, I remember being obsessed with this feeling of fear and a sense of loss for months when we found out about our son's thalassemia. 

I am confused why your doctor thinks that the IV may not stay in.  We have never heard of this.  Our son has been transfused since the age of 3 months the IV has always stayed in.  I have never heard of this, there are possibly 20 transfused patients at the hospital patient where our son is transfused and I have never heard of them having problems as enfants.  Maybe this is something I don't know about, perhaps this does occur but I don't know about it. 

I am sure there are people who have ports and advocate them, but in my personal experience the one little girl who has a port is the least well adjusted to her treatment.  Again these are all my personal opinions and they reflect my understanding and knowledge. 

My thoughts and prayers will be with you as you get through this initial hurdle. 

 :hugfriend :hugfriend Sharmin
Sharmin

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Offline vic

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  • thal minor with sickle cell child
Re: WHAT DOES THIS MEAN??
« Reply #4 on: March 29, 2007, 08:37:43 AM »
hi christine,
i'm prpbably more like you and stood my ground and told the doctors that i would not be puuting christian through 2 days of trying to find hisveins, so we cross match that morning.  we have only ever waited for the maximum of 2 hours for this test.  i don't mind.  we cross match at 9am, go and have breakfast in the cafeteria, go oto the childreb's play area, visit the hospital library and read some books, then we go up to the computer room where he has a few games of sony playstation.  by 11 am we are back in our ward where the blood has arrived and he is hooked up because i ask them to put the canular in when they cross match so we are ready to go.  it works for us and i cannot at this point do the blood and canular over two days.

go in on monday and tell them you'd like to have a go at finding her veins first before committing to a port.  ask for the doctor or nurse who they know is really good at finding the veins at first go because there are some docs and nurses where this is definitely not their forte.  from there,  watch lauryn's reaction and how she copes with it.  make one decision at a time.

my thoughts are with you at this stage of your family's life
vicky

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Offline Bostonian_04

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Re: WHAT DOES THIS MEAN??
« Reply #5 on: March 29, 2007, 01:21:19 PM »
Hi Christine,

Since our daughter is an infant CHOB does the cross-and-match and the transfusion on the same day. They draw the blood for the cross-and-match through the IV they put in for the transfusion. This eliminates the need to poke her twice - once for drawing blood for cross-and-match on one day and the second time for putting the IV in for transfusion.

However, this means that we end up staying at the hospital for the whole day. But I believe that it is better for our daughter.

However for older thal patients the established protocol at CHOB is that they cross-and-match on one day and transfuse the next day (or the day after) - the cross-and-match results are valid for two days, I believe.

Don't worry, Lauryn should be OK .. make sure that you and your husband are strong.

Take care .. and let us know how did Lauryn's transfusion go.

Bostonian
Quis custodiet ipsos custodes ? - Plato

 

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