In the end, M died as he lived. He did it his way.
June 20th, M got a common, ordinary cold. He was due to start his IV antibiotics first of July, so I didn't think it was a big deal. By the next day, he was in very bad shape, very fast. We discussed starting his IVs early, but I really don't think we realized just how bad this was. It was a cold. His lungs were FINE the week before. It's his liver that has been end-stage, not his lungs. We decided we would start oral antibiotics to tide him over a week and increase his vest treatments to 3-4 times per day.
For a little while, it worked. He got better, it seemed. He was cranky. He was fighting all our efforts to work with him, but he was breathing better again.
By the 28th, we knew the orals were not doing enough good, but still we were starting the IVs on Monday so all would be fine. II and I discussed that while we were certain we would get him through *this* crisis, we were worried that he might be too fragile and weak to make it to his next round of IVs that were supposed to be in October. Never did we entertain the possiblity that the IVs wouldn't work this time. We simply assumed they would do what they have done in the past and clear his lungs.
M started his IVs on July 2nd. By July 5th, it was clear he was not getting better. It was a holiday week, which made everything odd around scheduling these at home instead of in the hospital. I had assumed when hospice drew the labs on Tuesday, they would call us if the antibiotic levels were not where they needed to be. The doctor didn't call and for a day, I thought they were fine. Instead, they call on the 5th to get the levels changed.
The next two days were a blur of activity, trying to get things shifted to help M feel better and breath better. Throughout all of this, M was raging. He was attacking people. He was trying to stop every treatment we ran, from the simpliest feeding to the IVs and everything in between. On Saturday, we knew we had lost the battle. His oxygen levels dropped into the upper 70s and we could not get them up. M had fought us to not wear the oxygen tubing in his nose and we put our feet down that he WOULD wear the oxygen. We realized he was aggitated and fighting because he was drowning. The ONE thing we swore we would never let happen to him.
Saturday evening, we made a frantic hail mary phone call to M's Cystic Fibrosis clinic. The antibiotics were not working. We could not wait until Monday to do something. He was sick. He couldn't breath. This was not his liver.
The phone call was returned by the director of the clinic, who happened to be on-call for the weekend. Based upon what we were seeing, he felt it was very likely that M had finally reached end-stage lung disease and not merely end-stage liver disease as he had been since January. He was willing to try several things to help us, but he warned us that they might not work at all. While we had reached a point in M's distress that we were willing to put him into the hospital in order to relieve his suffering, the doctor assured us that he would be very aggressive in working on M's lungs so that we could allow his liver to now do what it was going to do, to relieve M's suffering, and he could do all of this while keeping M at home.
While II was on the phone with the doctor, M began to beg with me. In the past, M always considered the hospital a grand adventure. He met new people, got undivided attention from a parent, got new toys watched all of the Spongebob he wanted and sometimes got to ride in cool ambulances and helicopters even. M always liked going to the hospital. Not this time. He begged and pleaded with me. He told me he didn't want to go to the hospital. He wanted to stay home. He kept saying, "No more, mommy. I don't want to go."
This was a turning point with us. M's doctor ordered steriods. Steriods are highly toxic to the liver and throw the pancreas out of equillibrium. Steriods are a dangerous thing to prescribe M. However, we reached the point that without these, M could not breathe and would continue to drown. This was he first aggressive palliative care measure we had ever sought for M that we knew would have immediate and fast acting consquences on his life. Essentially, we were choosing to give him a medication that would kill him quickly for the chance to provide comfort in a process that we couldn't stop. It meant we recognized that M's death was no longer something abstract in the future. It was now.
At 11 pm, II and I drove across the city to the only 24 hour pharmacy we could find. We cried. We prepared. We understood what we were doing and we refocused all of our effort for our son. We could not fail to support him nor could we stop his death at this point. We discussed what we needed to do to help him be comfortable and safe. We called Hospice to pick up waterproof pads, diapers, and wipes. We knew he would ilkely never use the bathroom again. Mostly, we just held each other and we cried. We knew when we got home it was time to finally tell M what was going on.
For five years, I called this child my son. The last nine months he was in fostercare, his fostermother stepped out of the way and encouraged me to claim him as my son. I had been involved in the daily care of concern of my baby for half of his life. For every day of that, I always assumed that when the day came that he was beyond the point of stopping death, that he would know what was going on. What I realized after this cold set in was that his body was telling him something, but because of his profound autism he didn't understand what it was telling him. The only way we could prepare M for death was to directly and specifically tell him what was coming. Saturday night, there was no doubt in my mind that it was time to tell him, even if doing so meant he gave up fighting to live.
When we returned home, we set into motion what we had prepared. We had discussed over and over again how to tell him and when to tell him. I had consulted with his old school teacher. We knew the only way to not scare M about death was to present it as something so much better than what he had here on earth anymore. So, we set aside all of our questions about theology and we told him the most basic and comforting thing we could tell him. We told him that soon he was going to go and be with Jesus in heaven. That when he got there, his body would never hurt again. He would be able to run, to blow bubbles, to even breathe without pain. We promised him he would be whole. We explained that we would miss him terribly here, but we would be okay. When he was ready, it would be okay for him to simply go be with Jesus. We would stay with him and hold him every step of his life that was left before he left us to be with Jesus.
Funny how telling my son what comes next brought back my own faith. For nearly three years, I have grappled with what I do and don't believe. I never lost my faith in God, nor my committment to a Jewish carpenter. However, I wasn't sure what else I held onto, when the church was so unsafe for me and my family. In that moment, I knew that I do still believe in heaven. I knew that my son would be with his creator soon, and that he would never hurt again. Honestly, I hated myself to say these things, not because I don't believe them, but because no mother should have to tell them to her ten year old child.
Saturday night, we started steriods and Sunday we had a lull. The steriods did their job to open his lungs and allow him to breath and he was comfortable, blessedly comfortable. For a tiny period of time, we actually dreamed that maybe we could still get on top of this cold. However, Monday came and the doctor switched his antibiotics to a different regiment, one that we stopped using three years ago because it no longer worked. The current ones were not working, so we had to try. In the midst of all of the labs, we also discovered that M's blood sugar skyrocketed. Again for a moment, we thought we had a lead that might end in something other than death right now.
Cycstics have pancreas function that is ineffective. Most are pancreatic insuficient and do not produce their own digestive enzymes. If they live long enough, eventually the rest of their pancreas dies and most Cystics developed what is called Cystic Fibrosis Related Diabetes (CFRD). So when we saw M's blood glucose levels so high, we thought perhaps he was developing diabetes. This would definitely explain his breathing struggles and why he appeared to not respond to the antibiotics. Except, this lead was not to be the miracle we were praying for. He didn't have ketones in his system, and his lab test that would show whether his blood sugar had been unstable long-term was normal. The only thing we could identify causing the sugar issues was the steriods.
We had to take away the ONE thing that was keeping my son comfortable. We stopped the steriods immediately Monday, and I knew it was a matter of time before he would start struggling to breath again. I also knew if the new antibiotics did not do their job, we were out of options. My son was dying. His lungs were drowning, and there was nothing we could do to stop this process.
Through all of this, M continued to fight. He was sleeping 18 hours per day. Yet, twice a day he had 2-3 hours of active, alert time. Sunday, he went outside and picked clovers with his sister. Monday, he was running around my house. Tuesday, he went back outside one last time to play. He got tired and sat down but he was out there and tried. By Wedneday, he could no longer walk on his own but he continued to have periods where he would sit and his siblings would play with him on the iPad. He was still guzzling Gatorade. He ate spaghetti for dinner Tuesday night, after refusing to eat much since January. He was talking to us as late as Thursday morning. M's spirit was here, with us, fighting death, to the very end. I never saw anything like that. I really thought his liver would crash, his amnonia levels would rise, and he would go into a coma. It really never happened. His spirit fought to the very end to stay here with us. I never expected that to happen.
Tuesday morning, M looked just the slightest swollen. However, he had been on steriods. so it was possible he might swell slightly from those and it might not be his body shutting down. We fed him his normal morning feeding and didn't see any trouble. However, we did weigh him and he was up eight pounds from two weeks ago. So, we knew he was likely swelling some. When I went to feed him t lunchtime, I had this horrible fear that his body could shut down and I could do more harm than good. However, his palliative care doctor had specifically told me to kepe feeding him, so I did.
Immediately after eating, he swelled up like a balloon and I knew we were in the last moments of my son's life. The organs and body systems shut down as the body dies. M could not digest that food. In fact, he never did digest it. I called his doctor and she expressly said that his labs said this might be his lungs and thus salvagable. She instruced me to take him to four cans a day instead of his normal eight but don't cut off all feedings quite yet. Since I had already given him eight cans Tuesday, I figured that gave me 24 hours to figure out what this was and react appropriately. I took him down to only eating or drinking what HE wanted. Of course, he wanted to obssessively drink. In the next 24 hours, he drank 3 cans of Diet Dr. Pepper and 2 bottles of Gatorade. He also ate two servings of spaghetti that night. Yet, he niether peed nor pooped.
Tuesday afternoon, he changed from being peaceful. From 1pm onward, he could not get comfortable. He would attempt to rest and would begin to have this grunting shortness of breath. His respirations were as high as 60 breaths per minute. We had taken him down to only the breathing treatments that would make him comfortable on Sunday and through the afternoon, I tried every anti-axiety medication I had to offer him, every pain medication I had, every breathing treatment I could offer him. By 8pm, we could not get him comfortable. He was restless and frequently sreaming on top of the breathing struggles. I called his palliative care doctor. I knew it was time for morphine. I knew morphine would kill him, which was why we had avoided until the very end of his life. Morphine would stop his bowels and cause a bowel obstruction. It would also quickly kill his liver entirely. It could only be pulled out at the very end, only to keep him comfortable at all costs. I knew what I was asking before I called his doctor. I knew it was time. When I called, her that was exactly what she told me. She sent a hospice nurse to assess him and confirm it was time for morphine.
While waiting for the nurse to show up, he started screaming again. I hadn't left his side in days. I was falling apart. I couldn't help my son feel better, and I couldn't hold myself together. II told me to go, go get out and breath for a moment. So, for a moment, I ran away. I went for a walk. There's a loop of roads that if I were to walk it would bring me back to my own door but send me walking 5 miles. I haven't built up to that yet, but Tuesday night that is where I headed. I made it 2 miles before II showed up. The only pharmacy open where he could go get morphine for M was 45 minutes away. He needed me to come home and hold M while he ran for meds. So, I came back home. I held my baby and I sang to him to calm him until his Daddy brought the medicine to stop his pain finally and forever.
Tuesday night, I laid next to my son and kept my hands on him. He mistook our talking about Hospice as a hospital and begged us to please not send him to the hospital anymore. We reassured him over and over again that he would never go to the hospital again. He was home to stay, and we would stay beside him until the very end. The morphine helped ease his pain. I kept my hands on him so I would know what happened to him. By 5am, he was doing okay and my body was killing me so I laid down on the couch for a few hours to rest. By Wednesday, M was losing the ability to swallow. His speech was slurred and he was incapable of holding his own balance to sit. Someone had to help support him or he would flop backwards onto his next. By afternoon, we were trying to slow down how much he was drinking. I didn't want him to feel denied, but I also knew if he wasn't peeing or pooping, that too much fluid would cause him tremendous distress. I was honestly grateful when he could no longer suck from a straw, then when he couldn't even sip out of a cup and we had to use a syringe. Our mantra became, here's a little Gatorade, you can have more after you take a nap.
Wednesday, he could not walk. When his aide came to bath him, his Daddy had to carry him to the bathroom and hold him upright while she bathed him. He had several periods this day when he would get restless. He wanted to go play. The best he could do was play on the iPad. His body was failing him and this distressed him but also made him mad. More than once, he would try to tantrum about this situation and we would merely give him a few minutes before he would fall back onto his nest and give up. Each time he became distressed, I would go to him. I would play Puff the Magic Dragon and I would sing it to him. Each time, this would calm him back down. Each time I would hold him, and hold back the tears. The last verse in Puff is horrible to sing to son who is dying, by the way.
Wednesday night, we gave him a good dose of morphine and settled again to try to sleep. At 2am, he woke up. He had peed, which was only the second time since Tuesday that he had done so. II and I changed him, cleaned his skin off well, gave him the Gatorade he asked for (only a bit more than a drop this last time). He sat up and refused to lay down. He was so weak by then that he propped himself over like a newborn to try to stop himself from falling backward. Finally, it was clear it was too much for him. We gave him another dose of morphine and II and I laid down next to him and began to sing. He asked for the iPad and we told him he could play it in the morning. It was clear that he could no longer see. His eyes were cloudy and unfocused. I couldn't tell him that he would never play the iPad again because he could no longer see it to play. We just told him to rest.
We turned Puff on my phone yet again and began to sing. In the third round, I broke down and could not sing through my tears. The little stinker followed the sounds from the phone and grabbed it. He held onto it and got aggitated. I asked him if he wanted me to turn off Puff and he nodded yes. I asked him if he wanted his "I love you" song and he nodded yes again. Since January, M has used this song to facilitate his ability tell me that he loved me. Earlier in the day Wednesday, I had been crying while singing Puff another time and M told me to stop crying. I switched to M's "I love you" song and I knew M was telling me that he loved him and to please stop crying. After that song, we all went to sleep. I assumed when M reached the very end, I would sense it. So I laid next to him and yet again slept with my hands on him through the night.
At 6am, he did a gasp. He was in Cheyne-stokes breathing and had recently knocked his oxygen off. I gave him another dose of morphine to keep him comfortable, got his oxygen back on him and woke II immediately. We lay next to him watching him. I turned on my phone to continious play for Puff. By 6:20, he was still with us. He garbled out asking for Gatorade, which was barely recognizable and we told him no, not this time. He then called out Daddy. When II looked at him, he tried to say, "I love you." Even in death, he was still HERE. Miraculously, instead of getting worse, he got better.
Our newest son, S has been inpatient in the hospital for several weeks. He was supposed to get a day pass to come see M and say good-bye the week of the 16th. I had called his care team on the 10th and explained to them that M would not be here if they waited until the next week. It had to be as soon as possible. S had specifically requested the chance to say good-bye to M. S's care team met with him, determined that he did in fact want to come, and they committed to doing everything they could to help get him here. However, it was determined that S is still fragile and could not simply have a day pass from the hospital to visit his brother. Instead, they felt his therapist and a different staffer needed to come with S. Therefore, the 12th was the soonest they could get him home. He knew there was a risk that M might pass before he got here, but he also knew everyone was doing everything they could to get him here. Sitting with M at 6:30 that morning, I really wasn't sure he was going to make it until S came home. He had asked for S the day before, so he knew he was coming that day. His body was just so weak and so worn out.
At 6:30am, I woke C. He was just around the corner in the library, as he had refused to leave M until he was gone. At 7am, we called the other children. I had two requiremens for each child. They had to tell M that they loved him. They also had to tell him good-bye. Those were the two things M needed to hear from all of "his kids" and I would not have him fighting to stay with us all because one sibling failed to release him in love. So long as they each released him, they were then free to process their grief and their position in his passing in whatever manner they each needed. It took nearly an hour to get E to come and say good-bye to her brother. She was the last of the children to come, but one by one they came. Some hugged him, some just sat and held his hand quietly. A sat quietly for an hour, merely holding his brother's hand. Even the dog came to say good-bye. She shoved her way between A and M and for 20 minutes she lay next to M while A pet her ears. M loved that doggie. I knew it was her good-bye as well.
E said her good-bye and then made a decision that she did not want to be in the house when M died. The nanny had already decided her children would not handle being here. So, after E said goodbye, she left for the day with the nanny and her children. J couldn't handle the pain well so he sat on the couch with the iPad for most of the morning. I continued to tell M how much longer before S could come, as I strongly suspected he was fighting to be here for S. The art therapist for three of the children was here and did art therapy with the youngest two.
At 8:20, Ch had sat with M for nearly an hour and got up to walk to the other side of the room. He told M he loved him one last time and M attempted to garble back that he loved him too. It was the last time M spoke. He had tried a lot before 7:30 and we had begged him to save his strength that we knew he loved us and it was okay.
At 8:45, S knocked at the door and walked through. This was who M had held on so hard for, had defied odds for. I hugged my newest son and reassured him that his brother held on. I told him the same thing I had told the others, tell him you love him and tell him good-bye. For a moment suspended in time, M was flanked by his biggest brothers. He was also SO proud of "his kids" and for that moment, A sat on one side, S sat on the other and I sat at his feet. He was surrounded by love and kept comfortable and painfree at all times by this point in time.
S struggled after 20 minutes and ran to another part of the house were II and his therapist worked with him for another 20 minutes. He sat another 20 minutes with me on the couch across from M, while L and J laid next to M hugging him and singing Puff to him. Finally, S's therapist suggested it was time for him to head back to the hospital. They did not feel it was wise to let him stay to see M actually pass.
After E and S were gone, A also left to hide in his room. However, the other five children stayed until the very end. In perfect unison, II and I understood that we needed to help M give up the fight. We increased his morphine just slightly but staying with the allowed dose the doctor gave us. At 10:30, it was clear M was going to fight no matter what. We felt the oxygen was no longer helpful but simply prolonging the envitable. Once again in unison, we felt it was time to stop the oxygen. Swiftly and quietly, we turned it off and allowed M to be free of all intterventions. He had railed and raged against the things we did which kept him alive. He hated tubes, hated interventions, hated all things that bothered him but kept him alive. We knew the oxygen might prolong his life a few more hours, but was bothersome to him just the same. He was unencumbered and free finally.
Within five minutes, his body turned blue. He continued to burn with fever unfettered by the tylenol we attempted to give him. Blue and burning hot was not something I expected to see, yet it was a testament to the spirit of this child who was my son. Even in the end, he fought against it. His breathing faltered but did not fail him. His siblings began to recognize that he was faltering. R and L came and laid down on II and I. We were surrounding M, singing him Puff over and over again. His sisters began to cry. When they began to wail, I gently but firmly told them they could NOT make noises. They could cry, they could weep, but they must keep their noises quiet so as to not scare him. Over and over again, he had proven that when he should have been mentally gone, he was still with us. I would not have them scaring him with loud mourning before he was actually gone. I promised the girls that as soon as he was gone, they could be as loud as they wanted to be, but until he was gone they must be quiet and not scare him.
At 11:15, M showed his first signs of Cheyne-Stokes breathing returning. I knew he could fight for another hour if he didn't just let go. I knew the gasping and pausing patterns would be more suffering than he needed to go through, and more torture than his poor siblings could handle. I had begged him to let go and stop fighting for 45 minutes and still he had fought on. I decided to try something different.
I sat up and pulled M into my arms. I quietly told him that it was okay, we would do this his way. I whispered, "M, this is one battle you are not going to win. You don't have to fight this battle. It's okay to let go now. But, it's okay, we'll do this your way. I stay with you until the end. When you are ready, you can let go and I'll stay here with you."
In that moment, my soul and my son were one. The eyes that had been cloudy and unfocused snapped back, well the good eye did. His lazy eye had been gone for two days and it didn't return. However, with his good right eye, M looked at me and began to blink, almost frantically.
"It's okay, M. I see you blinking. I know you are here. I know you can hear me. I'm here with you."
Another blink to respond and still the eye stayed focused directly upon me, never faltering from watching me as I watched him as well.
"Okay, M. It's time to let go now. It's time to stop fighting and just go be with Jesus now."
A pause in the breathing but he continued to focus on me. He took a tiny half-gasp to breath again.
"It's okay. You are trying to let go. I see that. We'll do this again together. One last time, my son, let go."
He stopped looking at me.
In the moment he lost eye contact with me, in that very moment, not 15 seconds after his last breath, I felt his heart stop. Not a several minute fight, not a falter and slowly stop, just an immediate halting.
He was gone.
I asked II for my stethoscope to confirm his heart was stopped and II said no, this was his job. So he listened and confirmed our son was gone.
In that moment, three siblings were touching their brother. One sibling was just slightly to the side but still part of the circle of love surrouding this child. One brother, too young to understand all of what was happening, sat across the room on the couch. Every child let out a wail so loud and so deep that it ripped my heart into pieces. He was gone. They knew they were allowed to cry out now.
II and I called A downstairs. It took 3 times for him to come down. We told him M was gone. He sat down with us and he too wept bitterly.
For about 5 minutes after he passed, I continued to hold my son in my arms. Then the words I heard whispered to my soul hit me, "This son is gone. You have done al you can for him. Now, tend to the living and comfort your other children."
That is what I did. I had II help me set M down peacefully, under his beloved Cars blanket, clutching his Raggedy Andy and his smallest Mickey Mouse. At some point, we called S and E to tell them. At some point, we called Hospice to send grief counselors and his nurse. When hospice came, they took the children away from the scene. C had not worked with the art therapist because he had realized M was in those final 45 minutes so he begged me to call her back. After the grief counselor worked with the kids, they went to the nanny's apartment to watch TV while Hospice prepared his body. Shortly after he passed, the children all let up a cry that he MUST have a Mickey Mouse shirt to leave the house in. He had none. II made a mad dash to the store and found the very last Mickey Mouse shirt there which he brought back to the house. Hospice dressed him in red pants and this Mickey Mouse shirt. He was covered in his Cars blanket and his had his Raggedy Andy and Mickey Mouse with him. The kids were allowed to see him one last time if they wanted to, his little sisters both came, the rest stayed away, except C. C had a panic attack when the funeral home came. He wouldn't let M's body leave. Everyone assured him that he could take his time, but he began informing me that he would never grant permission to take the body. By then his therapist had returned. I finally sat next to him and told him I didn't want to be forceful, but he KNEW what happens to bodies when they die. We could not leave the body in the house forever. He finally consented to letting the body go, and went to work with his therapist while we completed the last rituals for M. II lifted M onto the stretcher and I arranged his things for him. We granted the funeral home permission to take our son from our house.
It was finished.
Micah Andrew 3/22/02-7/12/12. His death certificate officially states he died of cirrhotic complications from Cystic Fibrosis. 65 roses may have stolen my son's body but it never took his spirit. It could not have his spirit. Breathe Easy my son. Breathe Easy.