It's late, but I wanted to write and quickly update all of my faithful readers (all 12,000+ of you who checked the blog in the last 24 hours!!!) We met with Patrick's medical team today to discuss the recent findings and to decide where to go from here.
The short of it is that Patrick is not slated to get better, instead he is expected to worsen and pass from this life into the next in the near future. When, we don't know. But there are no signs of improvement, and he is deteriorating rapidly with each new day. NIH has done absolutely EVERYthing in their power and in their scientific imagination to heal Patrick. They have run more tests than any normal hospital would ever run, to determine what exactly is killing my sweet Patrick. He has a complicated disease, and they don't know how to fix it. So, we are following Patrick's request, and not extending his life using extraneous measures. It breaks my heart 1,000 times over to have to say that, to have to anticipate my final goodbye to the love of my life, and yet, I know there is nothing these brilliant, yet kind doctors can do to make him better. We continue to pray for God's miraculous healing upon Patrick's strong, but now feeble body. I believe that God can heal, but I also don't know that He will in this case, and I need to be okay with that right now. Please pray, on my behalf, please have faith on my behalf, and please honor Patrick on my behalf.
His dad arrives from China late Friday evening, so we are keeping him stable, connected to all of his feeding tubes and IV fluids until Saturday morning. At that point we will make him as absolutely comfortable as possible, dress him in real clothes, and soften the scary ICU room a bit so that our dear Cecilia can come in and see him, and say her goodbye. We're going to give him a high-dose of steroids, in the hope that he will be able to muster some new, temporary strength and awareness. We would love to be able to say farewell to him while he still knows who we are. We'd love to hear his voice once more, if there's any voice left to give. And mostly, we just want him to know how much we all love him, will miss him, and are glad that he will be resting in the firm, loving arms of our God very soon.
So, if you would like to come see Patrick and say goodbye to him, please do so in the next 24 hours. Come Saturday morning, we are asking that you respect our privacy for a few days, as we, his family, say our personal goodbyes, grieve privately, and enjoy our last hours with him. (Granted, it's Christmas Eve, so I'm sure you have other fun places to be anyhow.) If he's still hanging on with us, come Monday, we may open up his room for visitors again, but we'll cross that bridge when we get there.
Thank you, thank you, thank you for your overflowing love for Patrick and for our families. Thank you for your support and prayers through all of this. It's the hardest season I have ever had to face or endure in my life. I dread the morning when I have to wake up as a single mom, and face each day without him by my side. For now, I'm spending as much time as I can with him, and hoping that he knows how much I love him, and how much I will miss his presence in my life.
If you have logistical questions, or are trying to reach me, please contact Patrick's sisters JoAnn (703)731-3958, or Christine (571)214-7840, my sister Amy (508) 377-2088, or our priest David Hanke (571)521-9081 for now. I'm not really able to respond to much of anything these days, so bear with me and my absence from all things normal for now...
My sincere love to each of you this night.