November 11, 2009

Extraordinary

Yesterday morning Brandon and I sat in Anne Marie's room while she had her "trial off" ECMO. A trial off is basically a practice run to see how she will do for the real thing. They clamp the machine so that her blood begins to circulate through her heart and lungs rather than being oxygenated by the ECMO machine. They can easily unclamp it if her numbers drop. We are easily able to tell how she is doing by watching the numbers on her monitor. We've learned what to look for and what are "good numbers." We can also tell how things are going by the doctors' reaction and by the results of a blood test they do every 10 minutes.

So yesterday they clamped her off and we watched the monitor. We watched two of her numbers -- numbers that are 100 when ECMO is supporting her -- steadily fall: 90, 80, 70, 60, 50, and lower. We saw the faces of the doctors when they looked at her blood gas results and we heard them quickly say, "Get her back on." Throughout the day we saw her doctors come and go. X-rays were taken, blood was checked, bandages were changed from all the bleeding she had. All we could do was wait, standing there stroking her little hands and legs. Finally, yesterday afternoon three doctors took us into a private consultation room to talk. They had their game faces on. They told us that because of the amount of bleeding she had and because the ECMO complications were increasing, she would have to come off ECMO. They didn't say that all hope was gone, but you know it's serious when conversations with doctors start to include words like "do not resuscitate" and "we'll make sure she's comfortable" and "autopsy."

So we walked back to her room. We stood by her bed and looked at her beautiful face and cried. And I prepared myself for the worst. Within a few hours our oldest children were on their way to Dallas from Oklahoma City so we could all be together. We arranged for a worship service, including Anne Marie's baptism, to be held in her room the next morning (today). Brandon and I came up to the hospital again last night so we could be with her again. The mood in her room was somber. I stood and kissed her head and hands, and ached to pick her up and hold her. I talked to her and sang to her. I told her how much we loved her and how much her brothers and sisters loved her and how many people were praying for her. And I wondered how I would be able to say goodbye to her. And once again, I asked God to save her, to let us bring her home, and to please let me trust Him no matter what He decides to do.

We came to the hospital this morning at 6:45. More standing by her bed gazing at her little face, more stroking her arms and legs, more kisses, and lots more tears. The kids came in to see her again. Pastor Shawn Young got up in the middle of the night and drove to Dallas so that he (along with Matt Oliver and Patrick Lafferty) could preside over a worship service in her room with family and close friends. And though the service was beautiful, a definite sadness hung over the room. Shortly after she was baptized (pictured below), she opened her eyes. I thought it might be the last time I saw her with her eyes open.

Rev. Shawn Young baptizes Anne Marie

The doctors began preparing for her to come off ECMO. They gave orders for sedation, checked blood and oxygen-saturation levels, rearranged tubes, and called the surgery team to come up and take her cannulas out. And once again Brandon and I sat on the couch watching her monitor, knowing this time it wasn't a trial but the real thing. Right before they started, Brandon leaned over and told me that in the waiting area just a few minutes prior, Rev. Lafferty, a pastor at Park Cities Presbyterian Church, had prayed that God would do something "extraordinary" today. And judging by the deluge of e-mails, texts, phone calls, and Facebook messages we have received, he was far from alone. (We are incredibly grateful for this outpouring of support, but that's a whole other post.)

And so they clamped her off and we waited. Her numbers -- normally 100 when on ECMO -- dropped to 90 and stopped, then fell off into the upper 80s, then went back to 90 and stayed level. After 10 minutes they took a blood gas and her carbon level -- the doctors want it in the 40s, but on previous trial-offs it had been 100, 70, 60, and 70 -- was 43. Another 10 minutes passed and her numbers were still in the 90s. Another blood gas was taken. The ECMO tech smiled when she saw the results and showed them to the doctor. Another 10 minutes passed and her numbers were still in the 90s and high 80s. The doctor looked at me and said, "Don't ask me to explain this because I can't." The nurse looked over at me and was beaming. The surgery team came in to prepare to take her cannulas out.

And now I sit here in Anne Marie's room tonight -- 24 hours after we thought it might be our last night with her. The ECMO machine is out of her room. Her numbers that we have been watching on her monitor are both 100. People have come in and looked at the monitor and wondered if she was put back on ECMO because her numbers are so good. The doctor came in earlier to look at the computer screen with various lab results on it and said to the nurse, "How do you explain that?"

Now that same doctor, whom we love, also reminded us today that Anne Marie is "still very sick" and that her situation is still "iffy." Her kidneys still aren't functioning, she still needs surgery to finish her stomach repair, she has a hematoma, and other possible complications lurk. We understand the gravity of it all, and we understand that doctors do not and should not sugarcoat things. We understand that Anne Marie could live 9 more hours or 90 more years.

But right now we are more grateful than we can say. We watched God do something extraordinary today. My friend Kym sent me a text today that said, "To God alone be the glory! Great things you have done." That pretty much says it all.