Wednesday, June 5, 2013

R's First US Transfusion

R's first US transfusion is in the books!  And, I'm happy to report that it was MUCH easier than E's first US transfusion!  So far, R has had 3 lab draws and each time it was one stick!  Everyone is reporting that she has GREAT veins, unlike her sister who still needs the IV team to get her line in.  The first time R had her labs done it took 3 of us holding her down while she screamed and kicked and tried to wriggle away.  After that, she's been absolutely stoic (almost too stoic if you ask me) when it's time to get stuck.

As with E, R has fast become one of the favorites at Boston Children's.  When we went in for R's transfusion, we all went as a team, bringing Miss E with us.  Of course everyone was so happy to see her, too.  As she is with her own transfusions, E wanted to "help" with everything for R's transfusion.  Wiping with alcohol, getting out gauze, etc.  One of the cutest things ever was when the nurse said she wanted E to go with her to the blood bank to pick up R's blood.  The nurse said that E told everyone at the blood bank and on the way back that the blood was for her "little sister" and that she's the "big sister."  She came running into R's transfusion room and proudly plopped the bag of blood right down on R's lap.  Something about big sister bringing little sister her blood really touched me, probably in a way that only a mom of a thalassemia patient (or similar) can understand.

The girls just hung out together, colored, watched Winnie the Pooh, and ate copious amounts of snacks to pass the time during the transfusion.  We had a nice meeting with our hematologist and nurse and got the low-down on what we know about R so far.  She was hypertransfused--given a whole unit of blood at each transfusion whether she needed it or not, she has no spleen enlargement (a benefit of being hypertransfused, if there is one), she's got iron overload (a consequence of being hypertransfused), she's got no antibodies to blood at this time, and they confirmed her genotype via DNA sequencing and she is indeed beta thalassemia major.  Which is fine by us!  That's what we asked for, right?  We have lots and lots of follow-up appointments to make, and I requested that we start chelation therapy ASAP.  Can't imagine how fun it's going to be to get two kids to take Exjade...

At the end of the transfusion, the nurse removed R's line, and E donned her latex glove and applied pressure to R's arm to stop the bleeding.  E took the job very, very seriously.  R looked at E as if to say, "Hey!  Who's the nurse here, anyways?"  Another very sweet moment.

So, that's the update on the thalassemia front.  Things are pretty much as good as we could hope for, given the situation.  As much as we love the staff at BCH, our goal is to get the girls on the same transfusion schedule (if possible) so we don't feel like we are there all the time.  Although E may not be able to "assist" as much if she's getting transfused at the same time as her little sister...

Who has this much fun during a transfusion?

Snacking away and watching Winnie the Pooh.

Check out the look R is giving E.  I think she's saying, "Um, are you sure
you know what you are doing??"

Nurse Emmie.  SO cute!

Taking her job very seriously.  We had to tell her that she didn't have to
squeeze QUITE so hard.


likeschocolate said...

I am so impressed. I once had to take my son to the Dr. to get stitches and it took 4 of us to hold him down.

Pattie and Joe said...

Way to go girls!!!! Baby steps, but still steps. They are more "blood relatives" than many families in the truest sense. Glad the first is over. Love You All.