When the horrible, inevitable arrives, even 6 weeks of preparation cannot completely prepare a person for what it is actually like to lose a child. I have known people who have lost a child, I have even thought about losing a child, but the “what it is like” of losing a child is so different than what I expected that it took my by surprise. I know many people have a lot of questions about what happened and why, so I will try to answer some of those questions in the days ahead.

Friday was a very strange day, to be sure. We were so encouraged by days of improvements after so many weeks of setbacks, or no change at all, and even the doctors appeared to be hopeful. Now, they are very good at helping parents keep their chins up, and we appreciated their frank honesty throughout this, and all discussions were about what Mr. Bug looked like “today,” not what he would look like in the future. The future was always uncertain and filled with hypotheticals. We were never given false hope. However, as I said, it appeared that they were hopeful. When I wrote the update early Friday morning, I mentioned that Mr. Bug was waiting for an ultrasound of his kidneys to determine their health. That ultrasound was just about to begin on Friday when things went very wrong. Mr. Bug’s blood gasses went haywire very very quickly. At one point, his oxygen read 2 on the monitor (it is supposed to be 100). More than a few minutes of that leaves a person brain dead, and then dead. At first the nurses believed that his “little red light” that read his O2 levels was not functioning properly. They moved the light to another location. They put on a new light. They drew blood gas levels, and when they read this blood test, they knew something was going wrong quickly. That is when we got “the call.” Brandon’s text read, “Call me ASAP” and my heart dropped into the ground and smashed all over the sidewalk.

We had just come home from one of the most pleasant afternoons we had spent in a very long time. A beautiful, quiet friend at a quiet park, our children playing cheerfully together, doing exactly what children do at the park when they are just about ready for a nap. It was warm and beautiful – you know how it is just before summer when the earth waits expectantly for the blast of heat, and it is just hot enough to make everyone drink more water and think about swim suits and beach toys, but the breezes keep the leaves and the grass cool for just a few more weeks. Lovely. Not a care in the world. I was excited to go see Mr. Bug that evening, and I was going to worry about who would watch the kids after this lovely time at the park. I thought a lot about Mr. Bug, how much we talked together the day before. I planned the books I would read to him. I planned to bring his new farm puzzle I meant to keep for his birthday, but I just couldn’t wait. He needed it now. Keeping in true Friday form, I left my phone ringer off for my Friday phone vacation at the park. That is why I did not receive Brandon’s text until I pulled up to the house and walked to the door. “Call me ASAP.” I called him and got the news: 5 new, huge holes had formed in Mr. Bug’s lungs, and there was nothing they could do for him. He was dying.

But wait, wasn’t he dying a few weeks ago from the same thing? Didn’t we freak out already over this, race to the hospital, talk about removing life support, and then the holes healed up? I had a lot of questions, and an overwhelming peace spread over me. I’ve never experienced something like that before, as I am typically high stress, always on the verge of bouncing into frantic action. I calmly told the kids to get back into the car, that we were going to see Mr. Bug, and that we were going to get to stay at the Ronald McDonald House all night long! They were elated. We drove like crazy to the hospital, and everything fell into place. Uncle Nathan was available to meet us at the Ronald McDonald House. Our angel hospital social worker had secured us a 6-person room just that day, so we knew we could all stay there together for the first time. Several doctors were available and willing to meet with us at a moment’s notice. Kiki, Judah, and Sunshine visited their brother, asked about the machines and tubes for the bazillionth time, looked for the snacks we always keep in Mr. Bug’s room, and then we handed them over to Uncle Nathan.

The doctors were very serious. “Neil Diamond” was there, thank goodness (he is one of my 2 favorite doctors), as well as the lung doctor who initially looked into Mr. Bug’s lungs the first day he was in the PICU. He is the first doctor who told me Mr. Bug had only the slimmest chance to live. He knew just by looking at his lungs that he had aspergillus, and that a baby with his medical problems had a far worse chance than your typical immunosuppressed individual. A baby with short gut, a liver transplant, years of immunosupression, a history of infections, a history of RSV with invasive interventions, a current attack of RSV, a recent rejection episode, leaving his “soldier cell army” all but destroyed so he literally had no defenses, and now aspergillus, does not survive the week. He survived more than 7 weeks. The doctors began to explain the issue. The 5 new holes were not like the previous holes. They were huge. The holes in his right lung were so bad that his right lung was hardly inflating at all. They had to crank the ventilator up all the way just to keep his oxygen levels at an acceptable level, and that acceptable level could not be maintained even with that intervention because the ventilator was likely making the holes bigger, and filling that outer lung encasement with air. We commonly think of this as collapsed lungs.

A collapsed lung, as I understand it, is a lung that cannot inflate because there is too much air filling the sac that holds the lungs. So there are your lungs, and then there is the encasement around the lungs. If you ever have seen the balloons at Disneyland where the Mickey Mouse balloon is inside another, round balloon, you can visualize this well. Let’s say both balloons are empty, the Mickey Mouse inside the round, and you blow Mickey up. You now have a blown up balloon inside a deflated balloon. Let’s say that over the course of 6 weeks you inflate Mickey as much as you can, just to popping point, and then deflate him over and over and over again. Over time, Mickey will develop thin parts in places, and at some point, he will develop a hole. At that point, the air you blow into Mickey will leak out into the outer, round balloon. The more air you try to push into Mickey, the more air leaks into the outer balloon. You might be able to put tape on the hole, and then keep blowing Mickey up, but now you can’t fill Mickey as full because the air that leaked into the outer balloon is pressing on Mickey. That tape may hold for a while, and over time, the air in the outer balloon will leak out, and all is well again. Let’s say you decide to blow Mickey up a little less, to avoid stressing the remaining weak points, and you go on your merry way. But let’s say there is a terrible, latex-eating alien living in Mickey, causing the latex to become infected. Even if you stop the alien, the infection remains and takes time to heal. Furthermore, the latex around the tape you fixed the hole with might be weakened. You have all these weak spots waiting to break, you have a very weak balloon from all the weeks of blowing it up beyond what it was meant to be blown, and even blowing it up not quite so full can still cause it to pop in it’s weakened state. Let’s say that Mickey, unfortunately, then develops several very large holes all over him. Air will very quickly spill once again into the outer balloon, and very quickly, the pressure on Mickey from the air in the outer balloon will make it impossible for Mickey to inflate at all. All air will just go directly into the outer balloon. Mickey is now collapsed. Let’s say, further, that the outer balloon is shoved against the power main “red button” for all of Disneyland. While Mickey was blown up in that appropriate outer balloon space, all was well. Mickey and outer balloon just sort of touched the power main and everyone at Disneyland enjoyed the rides and ate lots of churros and cotton candy. However, when that outer balloon fills with air, and then more air, and more air, it expands, and presses really hard against that red power button. At some point, the pressure is too much, the button is pushed, and Disneyland goes dark. The rides are over. The churros get cold. The cotton candy gets all hard and gross. Children are crying because they didn’t get to ride enough rides. Everyone stumbles home in the dark. That red button is like Mr. Bug’s heart. When you have large, untreatable holes in your lungs, the outer sac holding your lungs, called the pulmonary pleura, fills with air, expands, and starts to squeeze your heart. The consequence is that your heart cannot pump as effectively. This causes fewer nutrients and oxygen to get to your organs, and causes a buildup of CO2. All you chemistry goes crazy. You heart needs to pump even harder to fix the problem, but it can’t, and the lungs are squeezing harder and harder as they fill with more air, and your blood pressure dips lower and lower, and your heart beat gets slower and slower as it loses it’s own nutrition and oxygen and is squeezed harder. Your brain starts to die, which throws a wrench into the whole mess, and doesn’t help matters at all, and eventually your heart, which has been doing all the work under these horrible conditions, throws up it’s hands and quits. It is horrible to watch, and we did watch. We saw the story unfold on the monitor above Mr. Bug’s bed. We held his hand and talked about life. People who loved him were there, including said angelic social worker and his liver transplant coordinator, who might just be my favorite person in the world besides my family members. The night nurse we knew well asked to be transferred into Mr. Bug’s room so we would not be with strangers during Mr. Bug’s passing. Everyone was calm. Mr. Bug was snoozing through it all, completely sedated, hopefully having one of those crazy opium dreams. When the monitor showed his heart beat as 0, everyone lost it. What was amazing is that even then, all everyone in the room could think about was that he no longer had tubes coming out of him. He no longer has to wear that darned backpack. He no longer has those dreaded labs every week. He no longer has to be sedated, poked, taken to appointments, told “It’s okay” when it really is not – he is completely free! It occurred to me, he never was able to run, and this really frustrated him. Not knowing exactly what happens after death, whether there is a period of sleep until all are raised, or if one runs directly into the arms of Jesus (I tend to believe there is more evidence for the latter, but I withhold judgment on this one), I do think the next thing he experiences will be RUNNING! He will run in the grass (if there is grass in Heaven), he will eat what he was not able to eat on earth, the family’s favorite food – POMEGRANITES – and he will meet everyone I have always look forward to meeting, like Thomas Aquinas, and King David, and JESUS!!! There was such intense joy in the room, knowing that his suffering had mercifully been taken from him, and while we selfishly wished he were running in the grass at the park, and cried many tears because he will not, we were so happy that this little one who had been through so much daily suffering for the past almost-3-years, was experiencing perfect peace, both in mind and body.

After a few minutes, my other favorite doctor came in with his stethescope to listen to Mr. Bug’s chest and lungs, and pronounced him dead. He looked and sounded very much like he would burst into tears, and he basically stared at us for a while, and came back later to make sure we were okay. I hope his family is gentle with him over the next weeks. He was so kind to us! We were able to hold his body well into the night and early morning, until he was very cold and pale. The men in the room were very reasonable and told me we should put him down and let him go. It had to happen sometime. He looked like he was sleeping, he felt like he felt those times he slept in my arms. Grandparents came down and visited, and held him. We made hand prints and foot prints (somehow the social worker got it right – so I would not go crazy with horror and grief, she brought me a craft to create!), we cut locks of his hair, the social worker made little castings of his finger prints. It was lovely.

I am kind of out of breath, and I know there are more questions, so I will write more later.

Please pray for Brittany, Mr. Bug’s birth mother, who loves him so much, and who loved him so much from the beginning, who gave him life, who gave him to us, and for whom the past 4 years have been a horrible, painful, joyful, overwhelming experience. Mr. Bug ended her childhood early in a way that most children never dream of, and she accepted that ending bravely, without resenting her little one, trying to make very difficult choices for him as a child that grown-ups often cannot make. She is probably the one in all of this who has suffered the most, maybe even more than Mr. Bug, and she desperately needs your prayers in the months to come. If you think to pray for us, please pray for her first, if you would be so kind. She needs some years of rest and peace so that she can heal.

“And the ship went out into the High Sea and passed into the West, until at last on a night of rain [he] smelled a sweet fragrance on the air and heard the sound of singing that came over the water. And then it seemed to him that as in his dream…the grey rain-curtain turned all to silver glass and was rolled back, and he beheld white shores and beyond them a far green country under a swift sunrise.”
–Tolkien, Return of the King

Our sweet baby Kye Matthew – August 11, 2009 — May 18, 2012

I just wanted to share that Mr. Bug is doing AMAZING this week! He continues to tolerate tiny (but regular) decreases in his ventilator settings, and he is tolerating decreases in his paralytic and sedative drugs such that he is beginning to try to pull things out! He can mouth words in response, he cries appropriately, he asks for Mamma all the time, and he LOVES reading! Why is this important? Well, it is unknown how much brain damage, if any, this ordeal has caused. Any number of issues could cause brain involvement, and the fact that he appears to be fairly normal so far is a HUGE relief! The Lord has shown a great deal of mercy to Mr. Bug! He is also tolerating the daily hemodialysis pretty well with safe blood pressure levels (I’ll explain later the issues this kind of dialysis can have). There was an ultrasound of his kidneys scheduled, and I am waiting to hear back as to the results of that. That ultrasound will show how much blood flow his kidneys have at each point in his heart beat, and can give a lot of information about whether his kidneys are completely shot, or if they are likely to heal. Yesterday he mouthed all his animal sounds, we read “Goodnight Moon” (his FAVORITE book), and read for about 1/2 hour from A Child’s Garden of Verses. I always thought “The Land of Counterpane” was so weird, but it’s now my favorite poem from that collection:

When I was sick and lay a-bed,

I had two pillows at my head,

And all my toys beside me lay,

To keep me happy all the day.

And sometimes for an hour or so

I watched my leaden soldiers go,

With different uniforms and drills,

Among the bed-clothes, through the hills;

And sometimes sent my ships in fleets

All up and down among the sheets;

Or brought my trees and houses out,

And planted cities all about.

I was the giant great and still

That sits upon the pillow-hill,

And sees before him, dale and plain,

The pleasant land of counterpane.

Let’s pray that Mr. Bug can learn to enjoy life in bed over the next few months and that God gives him the gift of an extremely active imagination! Love my baby boy!

Please continue to pray for kidneys, liver, lungs, all blood-producing parts of him as he is still in such deep water that his chances of coming to the surface are next to nothing, even with these improvements! Healing a tiny boy is easy for our Father, who sustains the universe as He wills. Don’t become weary in your prayers! Remember, he needs a year-prayer plan from everyone!

Just a quick update:

1. Mr. Bug’s ventilator is now initiating only 4 breaths for him, down from 16 yesterday! His blood gasses (how much oxygen and how much carbon dioxide are in his blood) are GREAT compared to even yesterday! Right now, he is initiating about 16-20 breaths per minute. This is a start. The ventilator is doing ALL of the other work in breathing for him. This means that while he initiates a breath, the machine does everything after that initiation. I am not 100% sure what all goes into taking a breath (several really smart respiratory therapists have attempted to explain it to me, but I have lost about half of my brain cells over the past 6 weeks, and I end up staring blankly at them and understanding almost nothing. I am determined to understand it one of these days). I do know that tomorrow they begin to lessen the amount of pressure they support his lungs with. I think what this means is that right now, the machine is blowing air into his lungs such that they do all the work inflating them. They will lessen the amount of pressure the machine inflates his lungs with, hoping that over the next week or so his diaphragm and all the other muscles necessary for breathing will become strong once again so they can do the work of breathing for him. The hope is that within 2 weeks, if all goes perfectly, he will be completely weaned from the ventilator. This does NOT mean that he will necessarily breathe room air without any help. It just means they will pull the tube out of his lungs. The amount of support he will need after that is unknown, as the extent of damage to his lungs is unknown. We are praying for really big things, though, and are asking God to completely heal his little lungs so that they are as good as new.

2. Tonight at midnight they are switching him over to a different kind of dialysis that runs only every 10 hours rather than 24/7. The thought is that a little boy cannot run around a play when he is hooked up to a machine, and the intermittent dialysis will give him the kind of life a little boy would want – one where he can RUN!!! His body has become strong enough to at least try this, but if he is not ready, they will switch him back to the 24/7 method he is currently on and try again at a later date. It is possible that with the switch, his body may trigger his kidneys to work again. Here, too, we are praying for complete healing of his kidneys such that he will not need dialysis beyond this hospital stay.

They are trying their hardest to get him OUT of the PICU!!! 🙂

Last week I took Kiki and Judah to Disneyland for a little vacation from all the stress. It felt a bit odd, leaving our baby so far away when he could die any second, for something as frivolous as entertainment. So. Glad. We. Did. Something changed in my perspective as we raced around from ride to ride, enjoying the amazing weather, defeating Zerg, encountering pirates, flying through space. My boy Judah is barely 4 years old, and he has dabbled in the whole roller coaster thing, but he is a hesitant child by nature, and while he desperately wants to be as bold and adventurous as the Valkyrie Kiki, he has not yet reached that level. We did convince him to ride Space Mountain for the first time. Kiki and Judah sat in the front row, and I sat right behind them, somewhat terrified that my skinny little boy would fly out of his space ship halfway through the ride, so I held on tight to his shirt. Kiki the Great LOVES adventures of any kind, and fearlessly faced the dark with a broad smile on her face, all her teeth showing, arms waving in the air, laughing and screaming, she was so happy NOT knowing what would happen next. She welcomes fear because she knows that, as she has said before, “when you are scared, you have the most fun!” All those dark surprises just intesify her joy and contentment with life because she is 100% certain that in the end, all will be well. And then she can’t wait for the next terrifying ride, and seeks it out until she finds it.  There is no fear when one faces darkness with this kind of certainty.

With Judah, it was a somewhat different story. When the ride stopped, Judah had NOT flown out of his space ship and he was smiling, but he was not eager to ride again. He said he thought he’d wait a while, maybe until he was bigger, to ride again. However, he was determined to ride again.

It occurred to me that I have been like Judah over the past 6 weeks. We have been on this utterly frighting roller coaster. Some days we are soaring with joy, so elated at tiny bits of great news. Other days, we are terrified, watching him die, watching him survive by some miracle of God’s grace, giving him one more day, to the astonishment of all the specialists. Through it all, I am okay with my boy dying and suffering because I know that in the end, whatever happens, there is no tragedy when an innocent is given more life, or runs into the arms of Jesus. I am happy with every extra day we get with him, but I have not been considering the joy in the darkness or the unexpected, drastic twists and turns. I am tired of being hauled up hills and sent plunging down – how far? It is too dark to tell. You just have to wait until you (hopefully) reach the bottom. I would really rather not be experiencing this right now, but like Judah, I am not scrambling off. It is odd to realize that unlike other parents, we actually have the option to GET OFF this ride. We can actually get up and walk away. We can, as one person suggested to me a few weeks ago, “give him back and ask for a different, healthy one.” But like Judah, we are committed to riding this out, this baby is our son, not legally yet, but to us, a piece of paper is not that important. Our boy is our boy, with or without a finalized adoption.

The change in perspective has been this: I have made a conscious choice to be content with all of this, and to have joy in this life we are living as a family. I get it that it is okay to feel sad. To feel sad is not to be any less joyful. To be sad is not to be malcontent. Joy and contentment are a choice, a matter of believing that these trials are GOOD, for the sake of joy every single day until joy is a habit. We have known this for ages. Aristotle wrote extensively on habituation in our actions for the sake of virtue to the end of eudemonia, as did the biblical authors. James famously wrote, “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.” When we consider something, we think about it from all angles, develop beliefs beyond our feelings, and look at the whole picture, both in the short-term and the long-term. James et alia remind us of this choice to actually consider something beyond our immediate feelings, which are not under our control, and delve into the world of beliefs, which are under our control, and they clarify the long-term result, which is habitual joy and contentment in all circumstances. It is a life where one literally lacks nothing. I imagine these biblical authors were referring to their own ancient beliefs regarding experiences of God, had by their forefathers. For example, King David wrote, “The Lord is my shepherd, I lack nothing.” I could go on and on with examples of the Christian mandate to choose to live life such that we choose beliefs leading to joy and contentment, as the evidence is overwhelming. Furthermore, those who wrote these things were engaged in something like a ride on an amazing, dark roller coaster. The didn’t know what would come around the next bend. Many of them were facing execution for what they chose to believe, which certainly must have made them feel bad at that moment, but it made their beliefs leading to joy and contentment stronger. They were like Kiki, facing the roller coaster with the most amazing faith that in the end, this terrifying ride will have been so worth it, that it OUGHT to be enjoyed, even while fear is felt. Furthermore, like Kiki, they begged for more terrifying roller coaster trials right away, knowing that the more trials one endures, the more joy and contentment becomes a habit. It becomes easy and habitual, like brushing one’s teeth, to live a joyful, contented life. However, this life is unlikely available to those who choose not to get on the roller coaster. And if one persists in waiting until one is “bigger,” like Judah, the life of joy and contentment takes longer to achieve.

And so, what is up with the little Mr. Bug? The court hearing to remove life support has been called off. What? Why? We don’t fully understand why this decision was made. Perhaps it was our meeting with the PICU doctor when we made it clear that we were no longer in support of that decision. Perhaps it was that his little lungs actually healed of most, if not all, of the holes the ventilator had made. Perhaps it was the fact that literally none of the doctors wanted to go to court and testify in person the reasoning behind removing life support. Perhaps there was dissent in the PICU specialist ranks. Whatever the reason, we thought it more than a coincidence that the day after we made our mind known (let him keep on fighting or let him die without adding any new care, but don’t remove him from life support if it is no longer harming him) we received a call indicating that life support removal was no longer on the table. Phew!

Not only that, in the ensuing days, his lungs became well enough so that he could begin the process of weaning him off the ventilator. Now, this is a long, tedious, horrible process for everyone involved. There is a “make or break it” mentality right now, and they are being very aggressive about this. I think they get it that Mr. Bug is a fighter, has been his entire life, and NOW is the time to get him better if at all possible. They have used all their medical powers to heal him, and it did not work, so now they are using his own little body as a weapon, and it has to either work or die. Either way, things are progressing. The ventilator is at the lowest setting in 6 weeks. Now, this does not mean a whole lot since he is still requiring an insane amount of support. It is as if he is held up by an enormous rope, and a few tiny fibers have been sliced so far. There is a very, very long way to go. At any point along the way, he can crash, and it is quite possible that they will just let him go rather than pulling him out of the crash. I think everyone agrees on that. But so far he is tolerating the reductions in the ventilator very well!

Please keep praying for him! He needs to go so far to get out of this mess he is in! He has been so sick for so long, it might be easy to forget about our pleas to the Father for his complete healing, but please don’t forget! That he is still alive is NOT normal for the circumstances he is in, and even though we ride this crazy roller coaster, and will continue to do so for many, many months, if he survives, he needs daily prayer from everyone who has even a tiny bit of care for him. He needs a year-long prayer plan from EVERYONE!!! This is not instant gratification, nor is it daily good news. Sometimes it is terrible news, and sometimes we, as his parents, doubt. We are relying on the faithfulness of the saints to remind us every single day that we need to make joy and contentment a habit, and part of that is hope in miracles!

Lest I forget, thank you all for your love! We are overwhelmed.

5 weeks ago at this time, we were waiting for lab results to tell us what was making our baby so sick. 4 weeks ago at this time, we were hoping the drugs would kill the fungus. 3 weeks ago at this time, we were frustrated by the very slow progress. 2 weeks ago at this time, we were still frustrated by the very slow progress. One week ago we were waiting for our baby to die, and were told it would be any day. Today we are still waiting, but we no longer know what we are waiting for.

We are a little exhausted, but much encouraged by the fact that Mr. Bug is in a very good place. He is standing at the gates of Heaven, just inches from it, staring in, but he has not yet decided what he wants to do. He is extremely sick. He is dying. His body is giving up, one system after another, and one tiny bleed at a time. But then, maybe it is not. Last week I was watching him die. I stared at the monitor as the nurse explained to me that his lungs were full of holes, and now his blood pressure was dropping, and now his oxygen level was dropping, and the next thing that would happen was that his heart would stop. But it never stopped. It beat and beat and beat until the next day, and the next, and the next. This week, we are told that while he is still incredibly, almost irreversibly sick, the holes in his lungs have almost completely healed up and his lung scans look ever so slightly better. He has defied both predictions made about him over the past week. 1. He did not die. 2. The dialysis filter was changed, and again, he did not die. We have had another week with our baby.

One thing is certain: He is getting worse. Now, since his liver and bone marrow are not producing enough blood, he does not have the cells he needs to clot properly, and so his little capillaries are leaking all over the place. We can see the little purple spots under his skin, but these bleeds are probably happening all over his body. They tell us that it is just a matter of time before he develops a massive bleed, which would kill him. Or his dialysis will malfunction, which would kill him. Or his heart will wear out and stop, which would kill him. Or his blood pressure will become unsustainably high or low, which would kill him. Or his liver will fail, which would kill him.

So now we come to the big question of this week, the big adventure in medical ethics. This is the one thing I really know something about. As we wade through all this confusion in the physical realm of his illness, this ethics thing is the one thing I have certainty about. We are a week past the meeting where it was decided that removing life support should be initiated. At that meeting, the consensus appeared to be that it was pretty much a non-issue because he would die within a day or two anyway. It was believed that the case would never make it before the judge, he would just slip away quietly. Furthermore, the life support was supposedly causing harm to him, the ventilator was blowing holes in his lungs, the blood pressure medicine was restricting blood to his organs and needed to be stopped, changing the dialysis filter would kill him. The life support was killing him, or so they seemed to imply. Today we no longer believe this. The case has not yet been taken to court, oddly enough. There are several reasons for this. First, a doctor has to go plead the case of removing the life support. Someone has to go in person. It is a 2-minute walk to the court house, but nobody is willing to do this. Weird, if removing the life support is truly in his best interest. Second, the lawyer, who is basically Mr. Bug’s legal guardian, has many questions about the ethics and the necessity of removing life support, and after a week of Mr. Bug defying the odds, we do too. The biggest question is this: If the life support is not killing him, and at the same time, if it is not preventing him from dying “naturally,” why not let nature take its course? If he bleeds internally, he’ll die naturally. If his heart stops, he’ll die naturally. If the dialysis fails, he’ll die naturally. But in the meantime, parts of him are actually healing, and so if the life support is actually NOT killing him, why not leave it on and let his body decide what it will do next? So today we made our thoughts on this very clear to the PICU team. We will go to court about this on the 15th of May, and we are ready to battle this out to the best of our ability. In the meantime, as usual, anything could happen.

Tonight I put my hands on his little body and prayed and prayed for healing. I could feel his heart beating strong, and his mouth made kisses and his hand squeezed mine, and I realized again, like I realize every single day, that while there is life left in him, there is hope.

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!

Yesterday was a pretty telling day. For 4 weeks now, we have hoped and hoped that Mr. Bug would begin to improve, and he has made some improvement in some areas, and but he has made no improvement in others, and the gains he has made have been so tiny compared to what he would needed to have made to have an actual chance at survival. There are so many things that can go wrong while one is on life support. Multi-organ failure on its own is almost impossible to survive. Multiple, deadly drug-resistant infections in a person with a compromised immune system are almost impossible to survive. Multi-organ failure AND multiple, deadly drug-resistant infections in a person with a compromised immune system leaves a person with the slimmest chance of survival. He’d have a better chance in the crossfire of a war zone, or ground zero of a nuclear blast.

Yesterday the thing we hoped would not happen happened. The infection has eaten through Mr. Bug’s lungs, and he is dying. The lungs are encased in this really nice sac that protects them and keep them all together. However, when you have a hole in your lung, air escapes into the space between the lungs and the sac, and the sac fills with air, making less space for the lungs to expand. This causes parts of the lung to “colapse.” Furthermore, as the sac fills with air, it pushes against the heart, which decreases its ability to pump blood efficiently. There is something that can be done. Tubes can be placed in the sac to drain the air so the lungs can de-colapse, and there is less pressure on the heart. Unfortunately, the place where the air has escaped into is located neatly under a bunch of arteries, and the likelihood that one of these would be punctured is high. Surgery to repair the resulting bleed, if it could be repaired, would likely kill him because he is already so weak and compromised. Everyone agrees that at this point, that this intervention would actually kill him. The other option is to leave him alone, don’t offer any new intervention, and see if the holes heal by themselves. His lungs are so infected that this is extremely unlikely. However, it is his only hope. The nurses expected him to die yesterday, especially since his blood pressure over the day went from 112/70 down to 60/30, which is not something a body can maintain for long . However, somehow, his blood pressure went back up, and this moring it was 95/50. This is nice, because it means he has a little more time, but he will likely end up in cardiac arrest when his heart decides it’s had enough of this, and then it will be all over. He is not in pain, he will be sleeping soundly, and he is on opiates, so one wonders what kinds of wild adventures he is having while the rest of us are in agony!

He is not dead yet, and I know there are more miracles to be had in the world. He really needs one today. Something significant. He needs whole new lungs, not a transplant, but somehow he needs his own lungs to be new again. The alternative is that he will run from his amazing dreams he is having into the arms of Jesus. And really, nothing could be better!

It could be any day, any minute, now! We love our baby!