I decided to begin an account of the struggles & triumphs my daughter faces on a daily basis, living with Beta Thalassemia Major (Cooleys Anemia). She's an amazing, vibrant, beautiful little girl, that has more experience, wisdom and grace than some adults out there. Hopefully our story will open doors to meeting & connecting with others that have similar lives. Thank you for reading!
Friday, January 20, 2012
Transfusion Day 1/20/12
Today is transfusion day. We started at 720 at the lab. With nearly no one in there, you'd think it would be easy breezy, but that's never the case. Apparently Mailyna had multiple labs that needed to be done & the receptionist struggled with trying to figure out which ones were actually needed. Come to find out, she needed all 15. That's right. 15 test tubes to be filled with blood. The tech counted out the vials 5 times to be sure. We didn't get out of there til 805.
Sigh... So I started to blog when we got to Kaiser with the intent on documenting the day & letting Mailyna give her thoughts a chance to process all day...however it wasn't an easy day at all... Like I said, the bazillion test tubes was the first thing. When we checked in & got her port accessed, they weren't able to draw the blood out, but it still pushed the saline regularly. She did have a slight discomfort, so we hooked her up to the IV to see how she felt about the flow at the regular rate the blood would flow. It seemed ok, so we waited on the blood. As soon as they hooked her up, I could tell she wasn't comfy. A few minutes in, distraction tactics weren't working & I could see she was feeling more than just a little pain. By the time I grabbed someone, she looked like she was about to cry. The nurses decided to do a peripheral stick & try for her right hand. She was completely distraught that they were going to poke her for a 3rd time today. She fought furiously & screamed like crazy, but the got it in & switched the line. Still in tears, she insisted it was still hurting & when they checked it. The line that started out smooth, was now getting hard & puffy... Which basically meant she needed a different site to be poked, yet again.
By this time, you could only imagine how angry & frustrated Mailyna had become. She didn't want any of the lines removed, she didn't want to be poked again, she just wanted to go home. Tears were endless. I felt like I was in an episode of Greys Anatomy & was trying everything possible to calm her down. Talk down a distraught 9 year old? Riiiiight. Finally, they were able to get a good, clean site that was smooth flowing.
The staff at our Kaiser Pedi Hem/Onc are amazing. Imagine the pressure they're under having a screaming child & a stressed parent, watching their every move. I'm sure they're great with everyone, but I like to think they give us special treatment. A lot of the staff have been there with me from the beginning & I appreciate & respect all of them. Days like today aren't easy for any of us. The staff are part of our family & I know they want what is best for Mailyna at all times. They all felt horrible when she refused to talk or look at anyone after the 4th stick. In fact, a lovely beading set found its way into our room as a nice little bribe for a smile!
What I expect to be an easy day of appointments just like the rest turned into a nightmare. What it comes down to, is that her port is no longer working. We've had issues with it the last 3 transfusions, but today was the worst so far. We had the port put in right before her 1st birthday, which would mean this sucker has lasted well beyond the expectancy. I remember they originally said it would last roughly 3-5 years... its been almost 9. We've been fortunate that she's had that option, because today, with the struggle to access her, brought back memories from that first year of her life where we had to hold down our little perfect baby while nurses & doctors poked her endlessly.
At this point, we have 2 options. The first is remove her existing port & replace it with a new one. We'd still have to worry about her playing any "contact" sports or activities, fevers over 101.5, risk of infections & all that good stuff I've had to be cautious about for the past 9 years. Option 2 is to remove the port & finally let go of all those limitations, but all of her transfusions would be done through peripheral sticks. The downside is the veins will take a beating & she may eventually need a port put in anyway. Its a decision that she gets a say in & it matters a lot that she gets that chance to decide.
We ended up missing 2 appointments, but luckily all of the doctors work so closely, they fit us in at the end of the day. We didn't leave Kaiser Oakland until 430. That's right, 720-430. Regardless, my child is a super trooper. She ended the day with a smile, sassy as ever . Stay on the look-out for a recount of today by the lil miss herself!
Thank you again to all of my family & friends that have reached out & left comments & sent up prayers for us. It was hard to keep it together, but the strength & support you've shared has helped both of us make it through this rough patch!