My CaringBridge post from June 11, 2017 received a great deal of attention – even more than the “What happened?” post. That is when I had to tell everyone who had been following on CaringBridge the news that I needed them to know, but I so hated having to share. I will share it here below.
That morning is becoming blurry. I want to write down what I remember. At the time, I knew it was one of the most critical times in my life. I could feel, even as I was living it, how important every moment was, how every decision made had to be done with precision. And I was unwavering. As I lived it, but especially as I look back, I thank Tim for that. I thank him for being so passionate, so opinionated, and so open with me on everything all the time, that even in things we never discussed explicitly – I knew what he would think, what he would say, what he would do. It allowed me to make all the decisions I needed to make in short order, if not easy, at least clear.
The “friends of Timmy” supported me and posted every day – sometimes even twice a day. So the lack of post on Saturday, June 10th, was likely noticeable to those paying attention. And it was significant.
On Friday, June 9th, I felt things getting worse. No one said it to me, but I had my little notebook that I kept. Each day I went to the hospital, I wrote down everything…. all of Tim’s medications and their amounts, regularity, etc. Every action taken by the medical staff, every reaction Tim had. Friday he was needing more and more blood products. More were needed, more were ordered. It was similar to his early days there, not the more recent days. I felt the difference. I felt the staff waiting for him to improve. I felt him not doing that. As I was leaving Friday evening, the nurse told me that they were waiting on the Intencivist (ICU Attending Doctor) to sign off on authorizing reaching out beyond the hospital blood bank, because there was a blood shortage. And they were out of platelets. That was a moment that brought up many thoughts and emotions…that I mostly tamped down, assured myself they were doing everything they could and headed home for bedtime. During D’s bath, right at turnover the day nurse called to tell me Tim was going to get the platelets. I thought it was sweet of her. Later the night nurse told me that his numbers were not improving and he was continuing to need blood products through the night.
Saturday morning was the National Capital Region girl scout day at National’s Park. I had bought tickets for Chief and A. After seeing them off to the game and ensuring my sister-in-law was set with R and D, I headed to the hospital.
Things felt much like they had on Friday. Then, my favorite intensivist came to see us.
Across Tim’s bedside, he told me to have people come to Woodburn and donate platelets. He had gotten them to give up the last bag to Tim. He said that the Rituxan had had a positive effect, and they seemed to have gotten the lymphoma under control for the time being… But all the side effects…even Tim’s tiny inching up immunity was causing him problems with it’s response – “making him sicker.” This was something he had told me could happen the night before – when my internal response was “how is it possible to get sicker than this?…”
Then he asked to speak to me in the hall. Away from Tim’s bedside, my favorite intensivist said that he’s going to have palliative care come talk to me. He apologized for not doing it sooner. He said he’s too invested. He’s trying everything. All the hammers are down. He said he could even get pulled off Tim’s case because his colleagues say he lost his objectivity. Finally, he said “I wouldn’t be doing my job if I didn’t tell you…. Tim is dying.”
I had to re-read the text and telegram messages I sent that day, to get the above all right. That last sentence, I didn’t send to the group I sent updates to for CaringBridge. The group that included Tim’s closest 5 local friends known (to themselves and their wives) as “the poop group.” I did send it to my family. Despite leaving out the last sentence they understood. This could be because they have a sideshow telegram group without me… and because one of the members is a therapist at that hospital. I have to believe she would have explained the severity of what I was saying to the others. OR maybe they didn’t need it. Either way – they understood. And every one of those 5 guys showed up at the hospital before I knew it. And almost all the wives showed up at my house with their children, so it was a big party day for my kiddos!
My favorite intensivist had so much sadness, and so much guilt that he hadn’t treated me the best that he should have. But he did. He was my favorite for a reason. He spoke to me in a way I could understand, more than the others. He learned about my background and education – and spoke to me in exactly the way I needed.
At the end.
If I had to hear them, I am so glad I heard them from him. I heard them at the exact moment I needed to. Not too soon or too late.
Those words spurred me into action. To get folks to my house to be sure my sister-in-law and the kids were set, to get Chief back to the hospital as soon as he got home from the baseball game. To communicate the urgency to anyone who wanted to come. And come they did.
The palliative care doctor was also amazing. She lives in my neighborhood. Has a son with the same name as mine. Said she felt like she was looking in a mirror. She spoke very softly. She was very understanding and compassionate. There was one thing that she said that helped me more than anything. She said apart from religion, she was a spiritual person, and she had seen much in her job – including a mother wait until her son got there from Afghanistan, then pass 5 minutes later, and that if I was meant to be there I would, and if I wasn’t – I wouldn’t be. She said that I could camp out there, but if I wasn’t meant to be there – it could happen while I was in the bathroom. If that happened, maybe Tim didn’t want me to be there for it. That helped me feel at peace, and spurred me into action.
When Chief got to the hospital, we went to a room to speak to the Palliative Care doctor again. My sister joined us for support. Like me, Chief was there every day and always speaking in the most positive terms, rooting for a full recovery, talking about what that would include. And yet, like me, you couldn’t be there every day and not understand how bad things really were. He agreed with me that we couldn’t make Tim suffer any more if there was no more hope. We called Tim’s mom, we got the process started with the Red Cross to reach Tim’s brother. His friends came. When they left, I asked if they had said everything they needed to say. I asked my sister to go home and help with bedtime… not that it was entirely needed, there was a huge crowd at the house! I asked those at the house to keep A up. When I finally brought myself to leave, I drove Chief home. The littles were asleep. I got A up to bed. She had been asking a lot of questions lately. Particularly, she wanted to know when she could go see Daddy. I didn’t make any promises, but I did say when he got to a different part of the hospital – not intensive care – they could go see him like they saw me when D was born. I told her that that day, for the first time, the doctors told me that Daddy might not get better. Daddy might not be able to come home. It was the only thing that I could do to prepare her.
After she went to bed, things mostly seemed in order, so I wanted to get to bed fast. I got great hugs from my niece and nephew. I went up and climbed in bed, turned off the light. Then my mind started racing. I’d been pregnant three times before. I didn’t think I was, but I couldn’t be sure I wasn’t. I jumped up and ran to my bathroom and frantically searched under the sink until I found one – a pregnancy test, with June 2017 expiration date! I took it and waited. If I was, I had to be able to tell Tim.
Fortunately, the test came back “Not Pregnant.”
I went back downstairs, because I just had a feeling I might get called to the hospital in the middle of the night. I asked Chief, if I was, did he want me to wake him. Then we talked to Lucas. He understood what we were telling him. I went to bed.
Just before midnight, I heard D. I went in, nursed on one side, while nursing on the other side the phone rang. It was the nurse practitioner. She said a lot of words.. “I’ve had to come all the way up on… we’re all the way maxed out on… I’m trying… I might not be able to.”
“I understand. I’m coming.”
I got D settled back in his crib. I texted Chief. I got dressed. I went to the basement to get him, past many sleeping people in my house. Just before I got to his bedroom door, he texted me back. I texted him to meet me in the foyer. I got my shoes on, my car keys.. looked in the closet for a cardigan. I couldn’t find anything of mine, so I took Tim’s BU zip up, even if it’s huge on me.
Chief and I drove to the hospital as fast as we could safely. Not knowing what we would find when we got there. I told him, if Tim was still alive when we got there, we would not let him suffer anymore. We couldn’t let him go fighting every second, hooked up to every machine possible. Chief agreed with me. Frankly, I think I could have told him I was going to get naked, paint myself red, and dance around his hospital room when we got there, and he would have agreed with me at that time.
When we arrived, the nurses explained to me everything going on… so much support, more than ever – maxed out on every single life support machine. I asked the nurses to get the doctor. The doctor working was the one we had when we first got to CV ICU on May 17th. We knew each other by then. I spoke to Tim. Chief spoke to him. The Doctor arrived. Told me that they were trying everything to keep Tim alive until the morning, so the family could be there, but he wasn’t sure he could do it, which was why he called me… but he would keep trying. After a quick glance at Chief I said, not without my voice breaking this time, “I can not let him suffer anymore.” Then they explained to me how things would go – that they would push the pain meds hard so that Tim wouldn’t suffer as they removed all the life support machines. That once they did, it would not be long.
For weeks I had been singing to him the James Arthur song “Say you won’t let go”… it was my way of staying positive. Asking him not to let go. No matter how terrible it was, that if there was a light at the end of a very long tunnel, he would be there for his children… because the alternative was unacceptable. Because no matter how bad right now was, letting go would be forever. But on Saturday I had to stop singing that. I didn’t know what to sing. So then I just started singing “Stolen” by dashboard confessional because it’s what we danced to at our wedding. Because it was one of the first songs he had me listen to after we finally started dating! In that song there are the words, “sleep well.” I didn’t remember that. I didn’t recognize how fitting the song was until I sang it. I don’t even know if, at the time, his dad knew it. I told him how much we all loved him. I told him that even if I knew this would all happen, I would not have changed a thing about our life. I told him he had fought so hard. He was amazing, and we were so proud of him. I thanked him – for loving me – for teaching me so much – for loving our children – for fighting so hard to stay with us. I told him it was okay now to let go, to sleep well.
When they were ready to start removing the machines, the doctor asked me if I wanted to step outside while they did that. I stared at him. He said I didn’t have to. I said “then I’ll stay right here,” clinging to Tim’s hand as I basically had been for over three weeks. His dad said the same. After all we’d been through, after everything I was in the room for, I was surprised he even asked me.
When the machines were gone, it was more peaceful. For weeks, when no one was in the room, I would lay my head down on Tim’s chest, as close as I could get to climbing in that bed with him. IT provided some comfort, with the sense of touch, that position I was so physically comfortable with, but to listen to the ventilator breathe for him. The sound of the mechanical breathing. I could never listen to it for too long. At the end, that was gone. And I was just lying on my Tim. As I had so many times before. And I lied there. And I cried. And I just loved him so much. I tried to send him out of the world with so much love. And his dad stroked his head. His dad, who was there for his first breath in this world, was also there for his last. They told me he would be gone when his heart stopped beating. At that point, it was too hard for me to tell when that was. It was quiet. Finally quiet. No more machines. I made the doctor tell me when. Until then, I just laid on his chest and loved him.
The doctor told me. The staff were all very professional, but empathetic. Kind. The official time was 1:32am. While waiting for the paperwork we would need to sign, Chief and I took down all the art work from the kids – ours and daycare friends. I called Tim’s mother.
On the way out, I ran into one of my favorite ICU nurses and ECMO specialists. I had suspected she was pregnant. I figured if ever there was a time I could point-blank ask someone that it was then. So I did. She said she was, and that she had suffered miscarriages so she wasn’t quite ready to tell people. I was glad I had pulled her away from the other staff to ask her. I congratulated her; I wished her well. We hugged. We cried. I gestured for Chief. We walked out for the last time. He stopped at the bathroom. I sent a message to our friends who had been updating Caringbrige. I told them I would update CaringBridge myself with this when I was ready. I drove home.
When the girls woke me up in the morning, I brought them downstairs. There were enough people there, I laid back down. D woke up and nursed. I brought him down. I had to tell the girls. I think I will save that for another post. D was biting like crazy so I had stopped nursing during fully waking hours. When it was time to go pump, I wrote this on CaringBridge while pumping. It was the best I could do.
Journal entry by MaryBeth Gaige — 6/11/2017
No stone was left unturned in Tim’s excellent medical care.
As Tim’s immunity started to recover it started to fight the bacteria and yeast in his blood and he effectively had another septic shock-like reaction.
Everything started to get worse yesterday. They called me from the hospital and were not confident that with any amount of support (he was already getting every support available to human kind today) they would be able to keep him alive until morning.
At midnight I charged back to the hospital with Tim’s dad. It was very reminiscent of Tim and I charging to that hospital at midnight last summer…only this time I was driving and I was in a different kind of pain.
Tim went peacefully at 1:32 am on Sunday, June 11, 2017 with his father and his wife by his side, holding his hand, talking, singing and crying to him. We told him he was loved by so many. We told him he saved so many more lives with all the blood and platelet donations he inspired. We told him he would never truly be gone because he lives on in our hearts. Most especially mine, A’s, R’s and D’s! He will be with us always! But we knew he was suffering, and no one could have fought a better fight. So we gave him permission now to “sleep well.” (That is a line from the song we danced to at our wedding.)