Life in St. Louis 10/17/2010

Sent in by Nicole this morning.

I’m sitting in Wrenn’s room, trying to figure out how in the world to put my thoughts into words. My mind is on overload as I try to explain how time has passed over the last four weeks. For five months we were in a holding pattern and knew the goal; getting Wrenn healthy lungs. The anxiety of waiting was brutal and then once she had her transplant the ride turned more intense. For several days (even while lacking sleep), we were on a major HIGH. Before surgery we were told many times of the possible complications she might have during and after her surgery (there were MANY things that could go wrong and death was one of them!) and oddly enough she has pretty much hit them ALL. So what happens when you’ve hit that high and are told there are some MAJOR complications? You hit way LOW. Every bump pulls me down further and further to the point where I feel like I’m drowning and I can’t come up for air. Time, I am told is what she needs to get over these hurdles.

This last week hit me hard. Wrenn had fluid in her lungs, her drainage tubes were still putting out unbelievable amounts, her X-rays looked like they did at birth, she was put on SI-PAP, then down graded to a different form of C-pap, and is now on a high humidity nasal cannula at 6 liters and 40% oxygen. This scenario is very familiar to my Winnie Plamer nurses who went through the diagnosis with us since when was born. Coming full circle is eerie but I know God has his reasons. Maybe it’s closure, or testing the lungs, or testing Wrenn one last time. Maybe it’s a test for me, to always remember where we’ve come and that even with new lungs we can go back. It’s a reminder how she is still vulnerable to her everyday environment. Life as a transplant recipient is NOT easy and we will all have to make drastic changes when she comes home.

The duct will take six to eight weeks to heal (she will not receive breast milk until then). An ultrasound revealed that her diaphragm is paralyzed. (This can be a pinched or cut nerve from her surgery and/or from being on the vent for two months (as well as the paralyzing drugs). That in itself will take a good two months to recover. The surgeon told us today that they are going to wait and see how she does over the next few days and decide if surgery is necessary. (Surgery would be a huge setback). Pray for God’s healing hands on that issue!

On top of all of that, she is due for her one month bronc the end of next week, which tests for rejection. This procedure is done in the OR and there is always risks of infections or complications. (Pray we have none).

Most patients are out of the CICU by now but Miss Wrenn has decided she likes it here, so we wait and see. I believe she is supposed to be there and WHY that is, will most likely be revealed in the future. I have learned that my questions ARE answered, sometimes sooner, sometimes later, but ALWAYS answered.

Wrenn’s nurse last night, Elisa, was telling me that she has worked in many departments of the hospital and that she has seen more miracles in the CICU than any other floor. God continues to amaze me at how he brings guardian angels my way, and reminds me that HE is always with us and surrounds my little girl as she fights these battles. Wrenn doesn’t know it yet but I look to her for my strength and of course to my blog, which has kept my spirit high even in my darkest hours.

We want to thank everyone for their continued prayers and wishes as we continue down this path of the unknown. I’m so glad we don’t have to do this alone! XOXO