The lonely walk to the Forest Wing
PHOTO CREDIT: Colin
Seeing your child suffer is probably the worst thing you can experience. Especially when there is nothing you can do but give it time. Maddie is in pain. She’s trapped in a hospital bed with tubes attached at every which point of her body. She desperately wants to go home but the end isn’t even in sight.
If you couldn’t wade through the technical post from yesterday, here is the gist: Maddie’s fontan restructuring has created a ton of extra fluid in her lungs caused by the increase of pressure. Messing around with her heart in surgery (and the blood transfusion she required in procedure) doesn’t help with her body’s normal electrical currents for blood flow. Subsequently, she’s dependent on an external pace maker to regulate normal heart beats and three different tubes coming out of her chest cavity to allow the extra fluid to drain.
None of these adjustments feel good. In fact, they make her quite miserable.
This poor little girl. Today was rough. This morning she screamed out in frustration, using the last of her strength. After that, it was a silent protest of listlessness, lethargy, and general sadness. She is already fed up with being at the hospital and we’re only on Day 3.
She continues to make small strides. Today she kept all her food down and used the bathroom completely. They keep trying to remove the pacer to allow her heart to beat normally on its own but it always ends up plugged back in after she becomes tachycardic again.
And as we suspected would happen, the extra fluid from her chest continues to drain and drain and drain. Pleural effusions, or the fluid buildup in the lungs, are common and expected after Fontan surgery, but because her Fontan is more complex, thanks to her dextrocardia and other abnormalities in her anatomy, the output is greater than they want to see 3 days out.
So, if you’re looking for specific items to pray for to help her, here they are:
- Maddie’s heart will beat regularly on its own
- The extra fluid or pleural effusions will dry up quickly
- She will be comforted and feel peace until it’s time to go home
As soon as her heart can beat without irregularity, she can at least leave the ICU. She’s checked some good things off her recovery list. Let’s hope these next goals get met soon.
As always, we are thankful for your love, support, help, and prayers. They are what keep us going.