Wrenn Update: September 6, 2010

Yesterday morning we were told that Wrenn had a 103 temperature. This was extremely upsetting news because a blood infection could keep her from getting a transplant. They immediately sent off labs and gave her tylenol (another drug added to the mix). She had already been having trouble holding her oxygen levels and was going down hill fast over the last 72 hours. Every little sound or touch angered her to the point of dropping from 85 to 45. This is NOT good and can affect her neurologically.

After watching these terrifying numbers fluctuate for several hours her doctor decided yesterday afternoon that she needed to be put on paralyzing medications. This is the ONLY chance she has to again be stable. An hour and a half later, Wrenn was finally back to oxygenating in the 90's. She is already quite swollen, will have a cathedore soon, is no longer getting breast milk, is still heavily sedated, and is on the highest vent settings possible. We really thought we were going to lose her yesterday but she has fought hard to stay with us.

We saw her latest x-ray, which is completely white. A normal, healthy x-ray should be completely black. There is not one spot on her lungs that works, it is truly a sad sight considering she is just 4.5 months old.

She has earmuffs on her ears to help with any sounds that might scare or annoy her. She holds her doggie in one arm and is resting on her back (for the first time in a LONG time).

We are not sure why she has a fever but a test called CRP was in the sixties, which means there is some inflammation somewhere in her body. Her fever around 1pm today was 102 but went down with tylenol. It has not returned as of yet and I PRAY it stays down. They had started her on antibiotics yesterday morning to nip anything in the butt. The biggest threat to her getting an infection would be from her broviac, which is a line that runs directly into a large vein in her chest.

The doctor has made it very clear to us that we have come full circle in managing her disease. They have literally used every trick in the book and cannot do anything else for her or the disease she has inherited. We desperately need lungs and I have been told they always seem to come just in time.

God, the time is now!



Update 9/8/2010: Wrenn's fever is gone. She had no positive cultures which is good news, but the doctors are being cautious and keeping her on antibiotics, just in case. The radius for a lung search has been increased to 1800 miles. It is now clear that Wrenn is nearing the end and really, really needs that lung soon.