So today we had the meeting every parent only dreams about in their worst nightmares. We had the “removal of life support” conversation.  Basically, as I’ve said before, Mr. Bug has made some improvements in some places, but not even close to how much improvement he would have to make to have even a remote chance of survival. At this point, the ventilator has harmed him by blowing holes in his lungs, and even though those holes appear to be closing up, and all his numbers are very stable, as long as nobody moves him or touches him too much, the likelihood that more holes will develop is extremely high, as is the possibility that his heart will just quit. We also found out today that changing his dialysis machine filter is no longer an option for him. This is because he becomes so unstable in the process of changing that filter, and the drugs they normally give him to help him through it would at this point kill him. Every time we ask if they can do X or give him drug Y, the answer is “No, that would kill him at this point.” I suppose this ought to be unbearably frustrating, but instead I have an overwhelming sense of peace about it all. Everyone has done everything they could for this baby from even before his birth. His birth mother, who will forever live in my mind as a very noble woman, gave him life and love, and hoped for his future, knowing he would be born with gastroschisis. This was his first gift of life. He was given so much care and love by the hospital after he was born, and when it became evident that his intestines were dying, they gave him his second gift of life, even though short gut syndrome came with it. When it was evident that he was getting very sick again, his birth mother did what was necessary, dealt with the amazing blow of the news that he was in liver failure, before he was even one year old, and fought tooth and nail for his third gift of life, a new liver. Over his first 2 years he fought infection after infection, always looked after with tender care, given one gift of life after another, until he was, by the grace of God, handed to our family as an amazing gift for us to love and care for through adoption. He was the long-awaited brother for Judah, who he promptly taught to sword fight, the twin for Sunshine to shower in love as “Sushie’s Beebee,” the little weak bundle for our valkyrie Kiara to defend and guide through the dangers of life. He had the ride of his life. For the first time ever, he went to Disneyland. He played in the snow.  He went to the park, swung on a swing, slid down a slide, played in a sandbox. He fought with sisters and brothers, and sometimes he won. He learned how to make animal noises, and went to the zoo. He rode the baby train at Legoland, and played in the toddler play area (perhaps the best day of his entire life?). He ate homemade food on his own plate, with his own fork and spoon, in his own red chair, that he climbed up into all by himself. All for the first time. All of this while going through an episode of liver rejection, having a brand spanking new g-tube placed, and then contracting RSV for the second time in his life. After all these adventures, Mr. Bug was hit by the tsunami aspergillus that even the best infectious disease and bioterrorist experts, the best PICU doctors, the best pulmonologists, the best kidney doctors in the world could not counter. It was not for a lack of trying. There has been tireless, extensive work done to find a way to help him. They worked and worked over him for 4 weeks, even though the first pulmonologist who looked at his lungs with the little camera told me outright that he would die within weeks, he thought. They knew it was likely a losing battle, and yet they fought to give him yet another gift of life. Unfortunately, though, it appears as though Mr. Bug is saying, “Thank you very much, but I am satisfied with all the love and adventures I have been given here on earth. I’d rather go to Jesus now.” And really, who could blame him?

So the legal process has been set in motion. This was one of the rare occasions when all of the specialists were in complete agreement that the fight has been grand, but it is time to let this little soul stop suffering. It will take about a week, it appears, before everything is in place legally and for the judge to hand down his judgment, and the doctors have agreed that if he lasts long enough to get a court order, they will wait until everyone who wishes to has seen him to tell him good-bye.

BUT…ever the optimist, and always believing in miracles, I am holding tight to the fact that he has another week! In a week, if God chooses to give us more adventures with Mr. Bug, He will heal him. And I believe that if he is healed, he will be healed so that he is as good as new. I am even praying that while God is in there working those miracles, He creates assimilation between Mr. Bug’s liver and his body so he won’t have to be on the immunosuppressants any more. It has happened in others, and it’s not too much to ask of God, for just that one extra little thing, I think.  🙂

Please continue to pray with us for miracles! We need healed lungs, kidneys, liver, bone marrow, did I mention lungs? Oh, and that bacteria, that virus, and that fungus need to be SMASHED and destroyed!