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.
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