I am reprinting this advice from Sharmin and would like to ask that comments on this be limited to the topic of what to expect during transfusions. I would like this to be a guide for first timers, so please do add any advice that you think can help.
Ideally, they would have drawn the blood for genotype and phenotype matching at birth so that they had a enough time to get results.
Although it is best to have the genotype information before any blood is given, even extensive phenotype matching will provide a good match until the genotype information is available. It took Lil A two years to produce antibodies against foreign blood, and it is usually multiple transfusions that cause the problem. Try to get the matching done before the transfusion, but if you cannot then just try to get it as soon as possible. Sometimes it can take up to a month to get the results of genotype matching - see if they will do it for you quicker.
This must seem very overwhelming to you - I hope that things get ironed out soon.
Here are a few things to expect during the first transfusion. Baby will not like getting the IV at all - babies veins are tiny and it may take several attempts to find a vein. Babies become very distressed, scream and sometimes hold their breath when they are upset. Just try to remain calm, the baby will feed off of you and learn to be calm. Once the IV is in and he is taped up you can hold him and get him busy doing something else - so he can quickly forget the poke. Try to smile and be playful so that he is not scared that something bad is happening - even as he grows this will be important in order to keep a positive attitude about thalassemia for him and for you.
IV's sometimes don't work in the hands, at times they need to poke feet (which babies hate!) - and I have seen some babies get it in the head (Lil A has never had a poke on his head but another little girl at our hospital does get it in her head).
If he is well hydrated and is playing a lot before the poke his blood vessels will open up and the poke will go easier than if is dry or sleeping.
The nurses will start the IV, and probably give him saline before starting the blood very slowly. Ari will have a bracelet (lil A likes to wear it on his ankle rather than his wrist because it causes less attention if he has to wear it to school). Blood is tested the day before the transfusion, Ari will be given the bracelet with his cross match number on it - when you go in for a transfusion the nurses will check the unit against the number on his braclet. Two nurses should be there to check the number and sign - at this time you can also compare that the blood type on the bag matches his blood type and number on his bracelet.
His vitals - blood pressure, temperature, heart rate etc will be checked before the transfusion, and then every 15 minutes during the first half hour - then every hour until the transfusion is complete. If you notice any hives, temperature change or sudden change in behavior you should let the nurses know.
It is a good idea to use Ari's own clothing and blankets because hospital blankets and PJs sometimes give babies rashes - so it is hard to know if the rash is due to the linens or the blood. Lil A's skin would get irritated due to the linens so I started using his own and the irritation stopped.
Ari won't like the blood pressure cough on his thigh tightening up, the poking and prodding and perhaps the cold fluid going into his vein - but by holding him and playing with him a lot you can keep him distracted. Soon he will forget about the transfusion and get busy playing. Lil A actually liked transfusion day a lot as a child - by the time he was 18 months he learned to drag his IV machine around and play with all the toys. He enjoyed having a special day with mom and dad at the hospital watching movies and having treats that he couldn't have other days. The nurses spoiled him too because he was a repeat patient that they got to know well. Be sure to bring your favorite coffee and a good book for yourself so that you can enjoy your time there as well - it will help you to form a more positive attitude about the experience which will then trickle down to Ari. He may nap for some of the time that he is there so you'll need something to do during that time.
It is nice to have visitors - grandparents - uncles & aunts - however - no one should look sad or act as they feel sorry for him. The should act like there's a party going on in his room and play with him.
Once the transfusion is done, the IV will be removed - vitals will be checked. They may keep him in for another hour to watch for reactions or fever. Some centers do a post transfusion hg (our center does not do it because they think that the extra poke is not worth upsetting the child) but other centers do. For the first few transfusions it may be a good idea to do the post transfusion blood test so that they can determine a good pattern for Ari's transfusions.
I hope that this gives you an idea about what transfusions are like and how to deal with them, I will keep posting more as things occur to me:).
Sharmin