Garry went into the operating room around 8:30pm on November 13th. Knowing you are now going to be waiting through a long surgery and having been fighting for so long beforehand, we went out for a sort of prayerful, tension, celebration dinner. It was hard to leave him but there was nothing more to do but know he was in the hands of a team of transplant surgeons. The few of us who had been up for days went for a sleep at the hotel after this, and the rest of the family went to the family waiting room outside of the ICU to wait for any word.
I woke up in the night and we all went back to the ICU to wait and doze in chairs. The surgeon walked in at 5am. It was a complicated surgery, but he did well. We took a deep breath. We hugged our surgeon. We got to go in and see him shortly after that.
Seeing Garry was hard. He was swollen, bruises from the IVs, and on a ventilator. They kept him asleep resting for the first day since he was so sick going into the transplant. I went back for more sleep while he was, knowing there was more to come, and feeling bone-tired from all we had been through.
He was also on 24hr dialysis to help his kidneys and to get the retained fluid off of his body. We took a breath too soon and there was more fighting to do. It felt like we were working backwards now but on the right side of things. It was hard seeing him in that state and we all took an hour or two at a time to sit with him and let him heal, rotating out of the family room just outside the doors.
His body started to right itself slow and steady. The second day his eyes opened a bit while I was stroking back his hair. The next he started to nod and squeeze hands. The yellow color started to come out of his skin right away. His blood numbers were righting everyday too.
On the fourth day he got the breathing tube out and traded it for an oxygen mask. We kept hearing the doctors say the word "good' and it kept us breathing too. On day five he sat, lifted, into a wheelchair. And, on day six the nurse said he had had eight litres of fluid taken off of him through dialysis within the last 24 hours, in the end it was twelve total. He did a swallow test to see if he could try eating, and had some soup and Jello to follow. Then they actually took him off dialysis completely as his kidney's were restoring function.
On day seven I raced in that morning from Easter Seals House to catch Garry making his first phone call home to wish our son a Happy Tenth Birthday. I took a picture for that surgeon who we had pleaded with. He gave me a big hug when I showed him later in the hall. Also on day seven, Garry was moved out of ICU and back to the transplant floor to do the rest of his recovery. After that I stayed in room with Garry overnight again as you really need your people to walk you through. It is both a physical and emotional fight, and he felt like it was going too fast, even though it was truly good.
On day eight that dreaded feeding tube came out and we cheered. Garry ate real food, the first in weeks. On the transplant floor he started working with physio to gain back strength and start to walk again, needing a walker to begin with.
His liver enzymes wavered and that was scary, but the transplant nurses and the doctors assured us that everyone deals with rejection and it's not the big rejection, they just have to get medications to the right dose for the individual. Still, they checked that flow from his new liver was working well.
Garry continued to progress at that good spot, the doctors got his medication up a bit and that worked to get his liver numbers going in the right direction, and after one week on the transplant floor he was released from VGH.
We stayed the first night close by at Easter Seals house and then onto our home stay with a generous family in Delta. Our kids joined us a week later. Garry is keeping up appointments as an outpatient starting at first with clinic appointments twice a week with our transplant team; nurse, doctor, social worker, dietician, and pharmacist included. He quickly moved to a once a week appointment, and at this point is doing so well that he has only had to return to clinic every two weeks, with labs twice a week locally continuing.
It really was from death to life. The story is not over, and we hope that by saying these things out loud we can help someone to lean on our words.... the familiarity, perspective, or information to cut through some of the fearful unknown.
Sunday, January 5, 2020
Saturday, January 4, 2020
The Transplant is Coming. #liverdiseasesucks (Part Six)
We are through to the other side of transplant and Garry is healing. The hard and busy battle and being away from home has kept me from writing this story, but it is maybe better to tell the rest of the story from this side of things. There is hope and joy after the stormy parts....
We were not home from RIH for long, only five days, before we knew we needed to go back to the hospital. Garry was so weak and feeling lethargic. He started talking practically about last wishes and I was worried the same way.
When we got there to emergency he was hardly able to stand and was readmitted. He had developed Hepatorenal syndrome. Essentially his kidneys couldn't bear the weight of keeping up with his failing liver, and they began to fail too.
Garry ended up back on a general ward, and thankfully to a more quiet room. At this point he could barely stomach eating anything and was wasting away more, with only enough willpower to walk a few steps to the bathroom. A feeding tube was the plan. This was one of the hardest things to bear. He pushed through for a few days and then wanted to take out that feeding tube and go home, anything for relief, but knowing that this was to sustain him. The doctor's were trying to keep him on that transplant list and stable, and also giving him daily blood transfusions. I asked him if he could just hold on for two more days. Surviving through so many medical interventions without an end date is very hard.
I went home that night and had a serious talk with our kids. We had talked with them at every progression, as it was important to us to be forthright with them. I told them that Daddy could not live much longer without a new liver. They already knew but saying it out loud brought a ton of tears and we had a prayer time together asking God for two more days, to which my son said, "no, one."
A pastor friend of ours had gone to the hospital that night and prayed with Garry too. Garry's mom was on night watch duty (as we had been rotating staying with him on a constant again).
The next morning just after my alarm went off, Garry's mom called and said to come right away, that the call had come and there was a viable liver. I had slept in clothes to go knowing it might come and yelled out the news to wake everyone as I ran out the door. After I got to RIH it was only about half an hour and Garry was loaded on a stretcher and driven by ambulance to the airport, so we could take an air ambulance flight to Vancouver.
When we arrived at Vancouver General Hospital, we met Garry's family at the door and they joined us up at pre-op on the transplant floor. The liver specialist came in and told us that Garry was the backup and that they might be sending him back home later if he did not receive the liver. This was devastating and we pleaded our case that Garry needed to stay even so. And stay he did, after they saw how sick he was.
Garry was admitted to the transplant floor and we hoped hard. We waited that day and evening and it was a dry run, where he did not receive the liver, but someone else did. Being on the transplant floor and being in Vancouver felt like such high standard of care and we were both still relieved to be there. Garry was even in good spirits and said he could do this for another week. He had some good laughs with his brother and sister the next day, and more blood transfusions to keep him going.
After that, it all went further downhill, and because of internal leaching of blood the doctor sent Garry to the HAU (or step down unit in ICU). He was put back on oxygen too.
In the HAU we literally begged the transplant team if they could open up a call across Canada for a liver. It was November and our two sons were celebrating birthdays this month and Garry could not die.
By the end of the day the transplant surgeon came back, telling us there was a possible liver. The surgeons would let us know if it was viable by the next afternoon, and if it was, the surgery would take place that next evening/night.
After this potentially good news, the night was horrible. Garry was so sick, shaking with nerves and couldn't calm or take anything for it, and I slept on two hard chairs pushed together, praying he would make it through.
That next day, November 13th, we waited for word again. Less willing to shout the news out just yet. Not trusting that this was it. Garry's mom arrived that afternoon and we all waited together, knowing the team of surgeons were explanting the donor liver sometime that afternoon. By that evening Garry's kidneys were crashing and he was potentially going to be moved to the ICU and put on dialysis. At seven o'clock we were told that we would know within the hour if the liver was viable, but before that even was resolved the doctor decided Garry needed to be moved to the ICU. Regardless, he would be prepped if it was a go, and if not, put on dialysis. We were told to say our goodbyes because he would not be awake when we saw him on the other side and would be on a ventilator. I realized later on that he was literally being put on life support, but my mind was still holding for that transplant and did not even think about it in that moment. They took him away and knowing we were still waiting on a verdict, I was heading straight to the ICU to find the family waiting room and wait on the call. Before we even found the family room, I got a call on my cell to come, that the liver was viable and they had tried to stop the nurse before she left, but she was already in the hall. From death would come a life....
We were not home from RIH for long, only five days, before we knew we needed to go back to the hospital. Garry was so weak and feeling lethargic. He started talking practically about last wishes and I was worried the same way.
When we got there to emergency he was hardly able to stand and was readmitted. He had developed Hepatorenal syndrome. Essentially his kidneys couldn't bear the weight of keeping up with his failing liver, and they began to fail too.
Garry ended up back on a general ward, and thankfully to a more quiet room. At this point he could barely stomach eating anything and was wasting away more, with only enough willpower to walk a few steps to the bathroom. A feeding tube was the plan. This was one of the hardest things to bear. He pushed through for a few days and then wanted to take out that feeding tube and go home, anything for relief, but knowing that this was to sustain him. The doctor's were trying to keep him on that transplant list and stable, and also giving him daily blood transfusions. I asked him if he could just hold on for two more days. Surviving through so many medical interventions without an end date is very hard.
I went home that night and had a serious talk with our kids. We had talked with them at every progression, as it was important to us to be forthright with them. I told them that Daddy could not live much longer without a new liver. They already knew but saying it out loud brought a ton of tears and we had a prayer time together asking God for two more days, to which my son said, "no, one."
A pastor friend of ours had gone to the hospital that night and prayed with Garry too. Garry's mom was on night watch duty (as we had been rotating staying with him on a constant again).
The next morning just after my alarm went off, Garry's mom called and said to come right away, that the call had come and there was a viable liver. I had slept in clothes to go knowing it might come and yelled out the news to wake everyone as I ran out the door. After I got to RIH it was only about half an hour and Garry was loaded on a stretcher and driven by ambulance to the airport, so we could take an air ambulance flight to Vancouver.
When we arrived at Vancouver General Hospital, we met Garry's family at the door and they joined us up at pre-op on the transplant floor. The liver specialist came in and told us that Garry was the backup and that they might be sending him back home later if he did not receive the liver. This was devastating and we pleaded our case that Garry needed to stay even so. And stay he did, after they saw how sick he was.
Garry was admitted to the transplant floor and we hoped hard. We waited that day and evening and it was a dry run, where he did not receive the liver, but someone else did. Being on the transplant floor and being in Vancouver felt like such high standard of care and we were both still relieved to be there. Garry was even in good spirits and said he could do this for another week. He had some good laughs with his brother and sister the next day, and more blood transfusions to keep him going.
After that, it all went further downhill, and because of internal leaching of blood the doctor sent Garry to the HAU (or step down unit in ICU). He was put back on oxygen too.
In the HAU we literally begged the transplant team if they could open up a call across Canada for a liver. It was November and our two sons were celebrating birthdays this month and Garry could not die.
By the end of the day the transplant surgeon came back, telling us there was a possible liver. The surgeons would let us know if it was viable by the next afternoon, and if it was, the surgery would take place that next evening/night.
After this potentially good news, the night was horrible. Garry was so sick, shaking with nerves and couldn't calm or take anything for it, and I slept on two hard chairs pushed together, praying he would make it through.
That next day, November 13th, we waited for word again. Less willing to shout the news out just yet. Not trusting that this was it. Garry's mom arrived that afternoon and we all waited together, knowing the team of surgeons were explanting the donor liver sometime that afternoon. By that evening Garry's kidneys were crashing and he was potentially going to be moved to the ICU and put on dialysis. At seven o'clock we were told that we would know within the hour if the liver was viable, but before that even was resolved the doctor decided Garry needed to be moved to the ICU. Regardless, he would be prepped if it was a go, and if not, put on dialysis. We were told to say our goodbyes because he would not be awake when we saw him on the other side and would be on a ventilator. I realized later on that he was literally being put on life support, but my mind was still holding for that transplant and did not even think about it in that moment. They took him away and knowing we were still waiting on a verdict, I was heading straight to the ICU to find the family waiting room and wait on the call. Before we even found the family room, I got a call on my cell to come, that the liver was viable and they had tried to stop the nurse before she left, but she was already in the hall. From death would come a life....
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