A Step In The Right Direction?

One of our worst fears for the second transplant has come to pass - Harper is now in the Pediatric Intensive Care Unit (PICU). Our experience with the PICU at Kosair has always been great care accompanied by an excruciating ordeal for us, as the intensive care leaves little opportunity for rest for us as the parents/family.

What's odd is that one of the main reasons she is here is because she needs rest - something she has not been able to do for the past 3 days. She has had a steady decline of her cognitive function with combative tendencies and extreme confusion. On top of that, her breathing has become more and more strained. Her abdomen has been swelling, which is a normal reaction to the adenovirus infection she's been fighting.

The confusion and combative nature could be related to several things. The amount of virus in her blood (which is very high) could have crossed over into her brain. She could have received too much of the multiple drugs she's been on for pain, anxiety, nausea, etc. She could be simply exhausted. Or she could have bled in her brain due to the fact that her clotting factors in her blood have been completely out of whack, causing her blood to not clot. Or it could be a combination of some, all or none of the above.

Since arriving at the PICU she has had a CT scan which has shown nothing abnormal, so hopefully no bleeds in her brain. That's a good thing, but I wouldn't rule out them doing an MRI to be sure.

Once we arrived at the PICU, after days of fighting, squirming, and extreme discomfort, Harper stopped fighting. The PICU team quickly intubated her, and she is now breathing off a ventilator with sedatives, paralytics and amnesia meds - but that's why we came. We wanted to calm her down and let her rest. Even if it is chemically-induced rest.

We don't know how long we'll be here. We don't know what will happen. But for now she's resting - which is a step in the right direction, even if it doesn't feel like it.