Discussion Forums > Thalassemia Major

Transfusing BabyI tomm. A bit worried

(1/6) > >>

BabyI:
Hello everyone,

Tommorrow I have to transfuse BabyI. I am a big worried. Don't know if this is best to do now. BabyI has been cranky lately, eating with difficulty because of fussiness, and didnt sleep well. I have seen improvement in her sleep and maybe somewhat in her eating (eats better when half asleep, but not as much as I would like). See in our last doc visit her hg was in the 8 and the nurse didn't do her weight very well (left blanket on the scale and said she deducted the weight). I feel she was off. Now this visit her weifht was 14.7 compared to 14.5 the last time. So I am not sure if BabyI didn't grow much or it was an inaccurate reading. Also the hg we did from heel stick said she was 6.8. When we redid it, this time from vein, it said she is 7.5. Lastly, they did phenotyping and determined her nucleated rbc were at 36 (said normal is 0).
So you see I am trying to figure out if I should continue with transfusion or wait. On the one hand I'm worried she isn't feeding well and may not be developing in this crucial time and thing it's safer to transfuse. On the other hand, I don't want to rush this as it can have its own set of consequences (iron overload, dependence, etc.)
BabyI is 5 months. She doesn't really play much because she's mostly cranky. My heart hurts for her either way. I feel transfusion is my only option especially for her brain development. I miss giving her normal feelings. Usually she'll taje some and then start crying pushing away even though she is hungry and I have milk.

Any thoughts would be appreciated. The first transfusion may be tough especially with needle poking (went through that once with phenotyping). I pray everything goes well for her.

Andy Battaglia:
I don't think you should hesitate to transfuse. Iron overload should no longer be a consideration on when to transfuse, as the advent of oral chelators has made it much easier to manage iron load. Your description of your baby tells me it is obvious that this child will be much happier and grow normally by beginning transfusions. A couple days after the transfusion, you will see the difference. You can't rely solely on Hb level. Observation of the patient is key to determining when to start transfusions. There is no advantage to delay.

Princess'M':
Hi momma of BabyI. PrincessM is just one month younger than BabyI. She is starting to exhibit most of the behaviors you are describing of your little one. It's a consistent battle to feed her, and at night she is up every hour to 90 mins because she's trying to make up for the feeds. It's an exhausting and draining situation so I definitely can sympathise with you.

With that being said please don't hesitate to transfuse. When I go to her hemo appts each month I see other kids there a bit older than her who transfuse and are having a ball playing. I know your little one's case will be the same. Our baby is on track to start transfusing soon, and although I know it will be scary initially I try to think of all the good it will do her.

Good luck and be strong... Will be praying for you... Update us afterwards <3

Princess'M':
Oh and I also wanted to say, do not let just anyone poke your child. Ask for a phlebotomist, one who isn't fresh out of school, and has poked at least a few dozen babies under 6 months. Ask them these questions when they're in front of you. I'm not trying to knock anyone. I work in the healthcare industry so just wanted to reiterate that you have rights and they must respect your wishes. After all, no one can beat mothers instinct :)

BabyI:
Thank you both for the encouragement. It helps a lot. When I was there one of the ladies that does needles only told me to ask them to get a stat nurse because since it was hard for them to get her blood it would be very hard for the transfusion nurses to do so. Is that what your referring to? The phelobotomist said they weren't allowed to go to that area only nurses can and the stat nurses do needles. So I made sure that's who does the needle. I hope they don't bring a trainee as I see how they try to do that. On one other visit they did that and I get so aggravated. Cause I didn't even know it was a trainee and they don't say anything to you. That happened at the excellence center. She messed up and spilled blood. I was very upset but didn't know what to do.

Navigation

[0] Message Index

[#] Next page