Transfusions gone wrong???

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!!                    

I just love our little girl so much and I am so protective of her.       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.

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

   

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

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

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

Manal

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

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

Maha,

I am very disturbed by your post. Don't let anybody bully you or get you to sign any papers. I am not sure if the transfusion in these hospitals are under specialised thalassemia clinic or just regular outpatient department.

I think this thread strongly demonstrates why patients and parents have to be proactive regarding medical care and treatments. These stories about transfusions gone wrong are numerous. Lisa told me about the time she caught the nurse just as she was about to begin her transfusion with the wrong blood type! Lisa's attention to the transfusion procedure saved her from an error with dangerous implications. I have heard these stories over the years and because humans are human, and nurses are often overworked or even just plain arrogant, it leaves it to the patient or parent to know the procedure from beginning to end and to make sure that every aspect is as it should be. Know the blood type. Know the proper amount of blood and the rate at which it should be administered. Know that your attention may very well save your life or the life of your child. Don't allow yourself to be intimidated by arrogant personnel. Don't accept the sloppy mistakes of those who are supposed to be held to a high standard. I had an experience where in the days after my appendectomy, I was supposed to be taken down to the x-ray lab and was wheeled down by a young woman who brought me to a desk and said "I have the man here for his biopsy." I just about hit the roof. I made so much noise about it, that the woman was reassigned to duties where she would never interact with patients!

Danielle has previously posted about the horrible episode she experienced at http://www.thalassemiapatientsandfriends.com/index.php?topic=106.0
These incidents are far too common and for the most part can be prevented.

I am sure that after reading that, everyone will realize the importance of being in charge and not letting anyone push you around. As Maha said, knowledge is power. Take charge. Don't ever let and medical professional make you feel that they are more important than you! The life of you or your child may depend on you standing up for yourself.

Okay what about the labs, i once made a CBC for my son, one showed that he is 5.8 and the other showed that he is 7.2 and the difference between the two tests were 12 hours. The two labs are swearing that they are correct and the machines are fully maintained and are being quality controlled every day .

They can't understand how such readings can have a tremendous effect on the doctors's decesions, whether to transfuse or not and the only solution is to go to a third lab and  have extra more needles for my son

Manal

Hi Canadian family
Transfusions in this hospital is not under specialised thal clinic. In Saudi they admit the patient for transfusions. Sometimes you have to wait for six hours before the transfusion actually begins.There are thal centers only in government run hospitals.I did try transfusion once there. The canula goes in with great expertise, Hassan didn`t even have the time to throw a tantrum. Then they took me to a room which looked like a store room. There were already a few moms sitting there. The nurse would come and call turn by turn. I didn`t know what was going on as I can`t understand nor speak Arabic and the women present there didn`t understand english. I was probably sitting there for over three hours and then they called me. Actually no beds were available and they were allocating them on first come first serve basis.The worst part was that they did not have a leukocyte reduction filter and we had asked the doc so many times if they used one before admitting him.When I questioned the nurse she kept pointing to the blood filter.The hospital we are taking Hassan now is a very good private hospital. The paed is very good. It costs more than ten times. The govt hospital charged us SR 130, here the charges are SR 1500. In addition to this we have to replace the blood. but problems do not cease
MAHA

I can't help feeling how lucky I am letting my son have his transfusion in Australia. Transfusion is an all day thing here. But the children's hospital has enough things to keep the child occupied. The only thing we have to get used to here is that we carry on most discussions with the nurse as we don't get to see the doctors very often. However, if there is any important issue, the nurses consult the doctors immediately anyway. Like what Andy said, parents have to have the knowledge because each time, there may be a different nurse, but the parent is always the same person. I always tell the nurse which vein is the most likely easy vein to get blood, and how fast the child can take the blood.

My daughter just had another transfusion and it went very well this time.  We had a really great nurse.  I told her about what had happened and she immediately sent the nurse manager in to see me.  So, these nurses did not get off scott free.  I found out the nurse who set my daughter at 110 ml/per hour was actually a charge nurse, one of the HEAD nurses!  I was floored, because I thought she was new.  I am confident now that this will be dealt with and the nurses involved will learn from this mistake.
~Rebecca
PS:  We are leaving in 26 days to go to China to bring our new daughter with Thalassemia home!!

Hi Emommy!

I hope that everything goes well from now on.

Bon voyage for China! Don't forget to take lovely snaps with your family for us.

Hi Rebecca,

I'm glad to hear that the situation has been attended to. Parents need to be aware that they have to understand every single facet of their children's care and also that, ultimately, the parents is in charge. I am so glad you spoke up, for as you see, it resulted in action. I hope every parent sees this lesson that you have provided and does exactly the same time when things are not being done correctly. As Aus just mentioned in her post

each time, there may be a different nurse, but the parent is always the same person.

You are the continuity for your child. The caregivers change but you don't. Each new nurse or doctor may have to learn about your child and you are the one who must be the teacher. I realize that at times it may be hard to stand up to the authority figure, but please do not ever allow them to abuse that authority. Do what Rebecca has done and stand up and tell them if they are doing it wrong. Your child's health is at stake.

Rebbecca, I am so excited for you. Best wishes on your upcoming trip and may everything go smoothly.

BON VOYAGE REBECCA 

ZAINI.

i personally make the nurses show me every unit of blood before it is attached.