Port Surgery:
http://crazylifeofthewilksfamily.blogspot.com/2013/10/the-next-step-port-surgery-today.html
http://crazylifeofthewilksfamily.blogspot.com/2013/10/port-placement-transfusion-update.html
Transfusion Days & General Thal Information:
http://crazylifeofthewilksfamily.blogspot.com/2013/11/all-about-thalassemia.html
Medication:
http://crazylifeofthewilksfamily.blogspot.com/2013/11/exjade-finally-arrived.html
& Trips to the Thal Center in Atlanta:
http://crazylifeofthewilksfamily.blogspot.com/2014/06/doctors-animals.html
Since then I've been SO glad to receive A LOT of inquiries about life with thalassemia, kids available for adoption, sorting out insurance coverage, reviewing files to help families considering these kids, etc. It has been AWESOME!!! I seriously LOVE helping families find the child meant to take their last name and find their forever family. And I LOVE thal kids! Seriously, there's a deep love for these kids. They are amazing, wonderful kids who have such a bright future ahead of them with proper treatment. And sadly, such dire circumstances and a deadly fate await them without proper treatment. My two thal kiddos are such an incredible blessing and so many kiddos are still waiting to bless the families they will be adopted into. So it's about time I tell ya'll what thal treatment is looking like for TWO!
We've done transfusions for them separately a few times and now together twice. Here's the breakdown of our latest trip to the Infusion Center on Friday and how it all works now that we have two of them.
7am- Leave the house for Nemours. It's about an hour away, plus this Mama needs Starbucks for sure before a day in the transfusion bay with two! Before leaving the house we put on our lidocaine cream. Chengbin gets it on his port, while Laila gets hers on both hands since we won't know til it's time, which hand is looking better for the IV start.
7am-8am Messy lidocaine gets ALL over Laila! She manages to move the press & seal that is covering her lidocaine, so before we know it, her doll is covered in lidocaine, her toy cup has some on it, and she's wiped some in her hair, on her forehead, and on her clothes just for good measure! ;)
8:10am We arrive and are brought back right away to access the kids and send their bloodwork off to the lab. Some thal families bring their kids in a few days before to get their bloodwork for transfusion day, but given our distance from the hospital, we do it all in the same day.
Chengbin gets his port "accessed" and then it gets sealed up and covered so he can play & be a kid while we wait for the transfusion. This usually goes very smoothly, though every so often it'll be a rough access day. This one actually was rough, but he is such an amazingly resilient little guy who just does his best to move on and be happy, no matter the circumstances.
Laila just received a port this week. Before receiving the port, the nurses decide which hand is looking best, warm it up, and then attempt to place an IV into her hand. This didn't usually go well for Chengbin before he had a port, but Laila has had so few transfusions that so far the nurses haven't had much trouble getting her IV line in. Thank God for this! They then put her hand on a board and tape it all up so that she can play and not worry about knocking out the line. I have no pics of her getting her IV line because she sits on my lap eating cool ranch doritos with one hand while they try to put a line in the other hand. ;) I will say that she is an amazingly brave girl who is very patient and doesn't even flinch- as long as she can watch them do it & eat her snack at the same time.
We visit the hematologist and then wait for blood to arrive from the blood bank. On this particular day we decided to go grab some food before the blood arrived.
At 10:45 our blood arrived and both kiddos were started up by 11:10.
Some playtime, okay- a LOT of playtime... (Thank the Lord for Child Life workers & hospital volunteers who help to entertain these kiddos while we wait for blood to drip!! Haha) Multiple trips to the potty... A couple snacks later and...
(This is the "Mama- help me get to potty" look!! Haha!!)
3 hours later they were all fueled up and ready to go!!
This was a best case scenario day! We were out of the infusion bay and on our way home before 2:30!! But even on our rougher days when the hospital backs up the blood bank and we wait longer for blood we are usually out by 3:30.
Another hour long drive back to the house and we were all set for another 3 weeks! :)
So that's what transfusions for two looks like right now. As they get older, the transfusions will get longer. They may not always be on the same schedule. And when those days come, we will adjust as any family would. But I am SO GLAD to have these two sweet blessings. I am SO GLAD God brought them to our family!! And I hope that this information will help other families who are considering whether or not they could handle a transfusion dependent thal kiddo.
We are SO blessed! Email me with any questions at mepscoastie@yahoo.com.
Thanks for Stopping by,
Fannie, Matt, & the Kiddos
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