Discussion Forums > Thalassemia Major

Transfusions gone wrong???

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EMommy:
Hi Everyone!

Some of you may know that we have a daughter with Thal major whom we adopted from China.  So, I took a crash course in Thalassemia and I have been learning as much as I can over the past year and a half.  Soon, we will bring home another daughter with Thal major from China.

I am wondering if Thal patients often have problems with transfusions.

I took our daughter in the other day and everything seemed to be going ok.  Then I noticed that the blood seemed to be going in too fast.  I always ask the nurses a lot of questions, so I knew from experience that her rate for getting blood is about 30 ml per hour.  But, the nurse had set her to receive 110 mls/hour by mistake.

So, our daughter ended up receiving about half of the (322 ml) bag, 160mls of blood instead of the 100 mls total that she should have received.  Also, she got that amount of blood in about 1 1/2 hours instead of the 3 hours that she usually gets transfused.  (For some reason they waste the excess blood - I have no idea why)

My question is what could happen especially if I had not noticed that there was a problem? 

The nurse was really trying to get me to leave in a hurry and telling me not to worry.
I decided that they were not getting off that easy, so I called the hemo and told him what had happened.  He very nonchalantly told me that I need to be watching for signs of stroke or heart attack.  My daughter seemed to be ok, except she had a slight fever, she wouldn't drink liquids and she was very hyperactive. 

On another occasion, the line was infused and the nurses thought that I was being overprotective because our daughter was crying hysterically during a transfusion.  I told them to stop the transfusion and check her line.  They kept telling me that everything was fine, but they checked her to appease me.  Well, of course I was right and they had to run her line again. 

Now, there are at least 2 nurses who are NOT allowed to touch our daughter!!   :mad                 

I just love our little girl so much and I am so protective of her.   :biggrin    I am always trying to do my very best to advocate for her and make sure that she has the life that she deserves.  It scares me that the nurse could make such a basic mistake. 

By the way, our little princess will turn ***2*** on Monday!!  She is growing up so fast.

Manal:
Dear EMommy

I am so sorry to hear about this bad expierence i know how you could be feeling at that time when the  doctor told you about the heart attack or a stroke... that is so scary, but your daughter is blessed for having you as her mummy.  May God bless both of you

I too wish her a happy birthday full fo health and happiness

Manal

 :yay :bigparty :bigparty :stars :stars 

maha:
Hi E-Mommy
I thought I was the only one who had problems.Here the amount of blood to be transfused is calculated as per the weight of the child ie 15ml/kg. So every time the amount transfused changes accordingly.But whatever be the amount it is spread over 4 hours.This is the third hospital I have changed and so far I had a problem at my first visit here. Everything was going fine, then a phlebotomist from the lab came and informed us that he would come to extract blood every hour to check his bilurubin.I had never heard nor read about such things which he insisted was the normal procedure for thals. It was quite late in the night and I demanded to talk to the doc. They would go out of the room then come back and try to pressurise me. I even gave in, but they kept pricking to find a vein and perhaps I got a little hysterical,since Hassan was crying like never before. I told them they were doing all this because the blood was probably nearing expiry. I hit the right nail and he started mumbling that they use only fresh blood for infants and if anything went wrong the lab wasn`t responsible, got a paper for us to sign which we refused. Now the lab knows us very well. Here everyone mistakes us as Arabs and speak in an Indian language with which we are quite familiar. They were whispering be careful with them they know everything. Well it is right Knowledge is Power
Take care
MAHA

Manal:

--- Quote ---Here everyone mistakes us as Arabs and speak in an Indian language with which we are quite familiar. They were whispering be careful with them they know everything
--- End quote ---

This is a shame, it is horrible when you know you are not safe in a hospital
 :( :( :(

Manal

§ãJ¡Ð ساجد:
Why do we have to do the things that they should do! Why have they set up hospitals if we are the ones that are going to tell them what to do :mad

It's so frustrating that they are so careless with issues that has someone else's lives on the line.

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