Tears for Tootie
For those of you that don't know, Tootie spent 8 days in the hospital last week. The CT Scan and MRI confirmed she had 2 more strokes.
Last Wednesday, Tootie's hematologist came into our IMU Room. She had "that look" I saw almost 9 years ago. She sat down and said, I am really sad, this is really sad. We can't figure out why Tootie is having strokes. We think she may have a rare condition where her body is just prone to having strokes, and if we can't figure out why, then this will most likely keep happening until it can't happen anymore.
She said Tootie has a purpose in this life, I don't want you to worry and live in fear, I just want you to enjoy every day you have with her.
She said the life expectancy for a child like Tootie isn't very long; that sometimes we have to make decisions, very hard decisions; sometimes we have to think about quality of life and know when it's time to stop the surgeries etc.
She put Tootie on aspirin and said she's hoping it will help; that some children who take aspirin never have another stroke and some do and if Tootie does, then you're looking at bleeding in her brain and that presents a whole other problem.
She then told us sometimes the best thing to do is to take your child home and enjoy them while you can.
At that moment my heart really hurt. In the back of my mind, I've always known Tootie could have another stroke.
I feel like it's Déjà vu. On 9 November 2003, Tootie had 2 strokes but was still able to walk and talk. 3 weeks later, she had another massive stroke which left her blind, unable to speak, walk, urinate, or eat.
Tootie is about to celebrate her 9 year post-stroke anniversary. I'd be lying if I told you I wasn't worried. But, I know my God has a plan for Tootie. I know she is His because we dedicated her to Our Lord shortly after we were told she had 3 strokes.
Back then the doctors told us she wouldn't be able to do anything, boy were they wrong!
So once again, I'm believing if it's His will, Tootie will recover, to her previous baseline, from these strokes as well.
I will not live in fear and will strive to maintain some normalcy.
Thanks for listening <3
IMU - Intermediate Care (a step down from ICU)
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