I decided that instead of the normal monthly post for Mia this month I would do a "Day in the Life" post for her! When we started this Thalassemia journey we didn't really know much about it at all. I wish I could see a post like this to ease my nerves and in the long run make things easier for me as a mom and Josh as a dad to understand. Most days Mia is just like any other kiddo, but then there's days like today, blood day, that are HARD.
Before blood day or "refill day" as we have named it can even begin, we have to have labs drawn. Usually the Saturday before blood day we drive up to Children's Hospital, which is an hour from our home, and have her labs done. They usually draw 8-10 vials of blood. Lots of different tests have to be run in order to keep her healthy and to be sure they have the exact blood they need to give her the following Tuesday.
This brings us to today! We aren't allowed to take pictures so there aren't many to post! That means, I only broke the rules one time today!
We need to be at Children's by 8 am so we left our house at 6:30. We wanted to get to the hospital a few minutes early so we could stop by the café for a muffin! :) We ended up getting caught in rain and then lots of stop and go traffic on the interstate so we didn't arrive until about 7:50. Just enough time to get our muffin! Right at 8 we checked in to our clinic. We soon were called back for a weight, height, temp and blood pressure check. We also filled out what she wanted to eat for breakfast and lunch. We made our way to the room where we will spend the day! We were the first to arrive today so Mia had her pick of what seat she wanted!
About 8:30 the nurse accessed her port. This is not fun but it's a sure fire stick every time.
At 9:00 our nurse practitioner came to see us! We LOVE Ms. Kristen! She talked with Mia about the zoo and listened to her heart. We talked about Mia's ferritin levels coming down from 1600 to 1200 in just the few short weeks she has been on Jadenu! HUGE PRAISE! She told me Mia's blood levels were lower than last time so she will need a 5 hour transfusion(250ml, I believe) today. Boo.
9:30- BREAKFAST TIME! Today Mia is having grits with NOTHING on them, scrambled eggs, a banana(her jam) and yogurt.
Right now it's 10:10 am and we are waiting on the blood bank to call and say they have her blood ready!
10:15-Blood bank just called and blood is almost done so Mia just had a dose of Tylenol and Benadryl to help her not have a reaction to the blood! Let's get this party started!
10:30-Dr. B just came by for a visit. She is Mia's hematologist! We LOVE her also! She is wonderful! She told me not to get excited about the Jadenu doing such a wonderful job just yet! :)
10:40-Our first bag of blood has arrived and we just got it started! Mia will be closely monitored throughout the day by several people to be sure she's ok!
Some people have asked what we do all day while the blood is going in. Mia has a tv with on demand movies and also cable. She watches tv, we have coloring books and crayons that we bring and of course LOTS of snacks! There's also a closet full of stuff she can play with...play doh, Mr. Potato Head, etc.
11:40- We're an hour into our five hour transfusion! Things are good so far! Other than the blood bank measured her blood wrong and she's almost fished with her first bag already...I'm not sure what this is going to mean yet...
11:50-Lunch is here and my girl is happy! Grilled cheese, French fries, fresh fruit cup and a veggie cup! The blood bank split the blood twice(should have been once), so we are waiting on the next bag.
1:00-We are on our final bag of blood! It will take a few hours for it so go in. Currently Mia is mad at me because I won't let her play in her leftover lunch. Trying to bribe her with snacks to get her to stop screaming. Cookies for the win! It's whatever it takes on these days, whatever makes her happy pretty much goes. Except for playing in food.
1:15- Just kidding, NOW we are on our final bag of blood. Should be about 2 more hours!
2:45- Can it take ANY longer? We are both bored to tears. Need coffee.
3:00- Our clinic room has 5 chairs. All of our friends have come and gone for the day. First to get here, last to leave. Poor Mia!
3:12-now she falls asleep. When we are almost done. haha!
4:00-FINALLY done and headed home!
We got home a little after 5, then it was dinner, baths and bed! :)