The 5th of March
After the 25th Joe's condition fluctuated hugely. On the days when he seemed to be doing well we managed to maintain a little hope; only to have that hope dashed again when he desaturated. The pattern, in hindsight, was that his lungs would bleed and then he would dip, after treatment he would improve and for a few days his oxygen levels would be stable. Then his lungs would bleed again and he would be back to square one.
One of the treatments/investigations that would help him would be a bronchoalveolar lavage, where fluid is is squirted into a small part of the lung and then recollected for examination. They did this to try to establish what was going on with Joe but it also seemed to get some of the old blood up and help his breathing. However, no treatment helped for any length of time so for around a week we functioned on the edge of fear; always expecting the worst and always hoping for good news.
Before Joe's transplant call Anna and I had booked a few days away in Prague with Tracey and Steve. It was something we had tried to arrange for a couple of years and had finally got around to it. We obviously were not going to go now but Anna and I desperately wanted Tracey and Steve to go. They both work incredibly hard and don't have a lot of time together. Steve does football coaching on top of his normal working week and spent a lot of time in the evenings and weekends giving his time to this. Tracey is doing a degree and working full time. Tracey works as a data manager in the Oncology unit at our local hospital so she sees lots of really ill people. She also has the softest heart on the planet and she can get very distressed at their stories. Already fragile at the loss of her dad and the stresses and strains of various other things - which are for another story, another time, she really needed a break. So, Anna and I made it our business to persuade them to go to Prague together. They flew on the 4th of March. They came through earlier in the day and the hospital kindly let them visit Joe earlier. He was stable and doing quite well so Tracey left in a slightly less apprehensive mood than she had been earlier. Anna and I took them to the airport and saw them off; promising faithfully that we would text them about Joe's condition on a regular basis. We had to virtually crowbar Tracey on the plane but she went.
We went back to the hospital and Joe was holding his own so we left for the night. Over that weekend we had been staying in a hotel again. The cottage that we had rented had been pre booked for those few days but we were moving back in on Monday the 5th so it was the last night in the hotel. Although Joe was stable, Anna was uneasy. Mother's intuition perhaps, I don't know? She phoned the ward and Joe had desaturated again and was very unstable. Earlier in the week he had suffered a collapsed lung and had a chest drain in. That night his lung collapsed again and they had to put another drain in from a different place. She asked Hannah, the nurse if she needed to come back up to the hospital who said 'no, not yet, but i will call you if he gets worse'. We went to bed and tried to sleep. At 5am in the morning, the phone rang and it was Hannah. 'I think you really need to get here now, she said, Joe has deteriorated significantly.' It was probably the quickest hotel checkout in history. Within 5 minutes we were packed and out in the car park. When we got to the hospital Joe's oxygen saturation was really poor and dropping. At one point it had dropped to 60% and despite being given 100% oxygen under huge pressures they couldn't get it up to reasonable levels. Joe's blood pressure was also dropping dangerously low, less than 70/40.
As his blood pressure dropped they gave him drugs to increase it and then as it soared they gave him something else to reduce it. His oxygen saturation was so low that the doctor eventually said 'I am going to try one more thing and if it doesn't work there is nothing else we can do. If you want to stay by his bed you can but you might find it distressing.' That she let us stay with him was a marker of just how close to death Joe was that night; as normally we were asked to leave if the doctors needed to do any treatment. What she did then was to alter the way in which the ventilator pumped the oxygen into Joe's lungs. Conventional ventilation pushes oxygen into the lungs in a different way to normal breathing but the inhale/exhale speed is similar. What the doctor did was to turn the ventilator to what she called 'pant mode' and the noise it made really did sound like panting. My knowledge doesn't stretch to understanding how that worked but as we watched he started to improve. Slowly, very slowly, his oxygen saturation increased until it was holding at 75%, it would then dip a little and then increase further and keep holding at 78%, then dip again and increase to 80%, and so on. In very small but incremental steps he improved until he was stable again. His blood gases were coming back to within normal range and all his other vital signs were holding steady.
The fact that Joe survived that night was, I think, a testament to 2 things. The care that the doctors and nurses gave him and Joe's youth. After watching the wild fluctuations in his condition and what the staff did to stabilise him we learnt that night that the only thing keeping Joe alive was chemistry and machinery. Anna and I both know that the 5th of March was a turning point. For us it was the loss of hope. I think, with hindsight, we both knew after that night that Joe wasn't going to make it. We felt there was a shift, not just in our thinking but in that of the staff caring for him. His body had gone through so much in the previous few weeks and it was clear that it was now failing. We left the hospital that day without hope and completely exhausted. I don't know what kept us putting one foot in front of the other; I only know we kept doing it. This time we didn't ring everyone and ask them to come through. It was as if we knew he was going to die but we knew it was not then. The following day, the Tuesday, the doctors asked to see us again.
One of the treatments/investigations that would help him would be a bronchoalveolar lavage, where fluid is is squirted into a small part of the lung and then recollected for examination. They did this to try to establish what was going on with Joe but it also seemed to get some of the old blood up and help his breathing. However, no treatment helped for any length of time so for around a week we functioned on the edge of fear; always expecting the worst and always hoping for good news.
Before Joe's transplant call Anna and I had booked a few days away in Prague with Tracey and Steve. It was something we had tried to arrange for a couple of years and had finally got around to it. We obviously were not going to go now but Anna and I desperately wanted Tracey and Steve to go. They both work incredibly hard and don't have a lot of time together. Steve does football coaching on top of his normal working week and spent a lot of time in the evenings and weekends giving his time to this. Tracey is doing a degree and working full time. Tracey works as a data manager in the Oncology unit at our local hospital so she sees lots of really ill people. She also has the softest heart on the planet and she can get very distressed at their stories. Already fragile at the loss of her dad and the stresses and strains of various other things - which are for another story, another time, she really needed a break. So, Anna and I made it our business to persuade them to go to Prague together. They flew on the 4th of March. They came through earlier in the day and the hospital kindly let them visit Joe earlier. He was stable and doing quite well so Tracey left in a slightly less apprehensive mood than she had been earlier. Anna and I took them to the airport and saw them off; promising faithfully that we would text them about Joe's condition on a regular basis. We had to virtually crowbar Tracey on the plane but she went.
We went back to the hospital and Joe was holding his own so we left for the night. Over that weekend we had been staying in a hotel again. The cottage that we had rented had been pre booked for those few days but we were moving back in on Monday the 5th so it was the last night in the hotel. Although Joe was stable, Anna was uneasy. Mother's intuition perhaps, I don't know? She phoned the ward and Joe had desaturated again and was very unstable. Earlier in the week he had suffered a collapsed lung and had a chest drain in. That night his lung collapsed again and they had to put another drain in from a different place. She asked Hannah, the nurse if she needed to come back up to the hospital who said 'no, not yet, but i will call you if he gets worse'. We went to bed and tried to sleep. At 5am in the morning, the phone rang and it was Hannah. 'I think you really need to get here now, she said, Joe has deteriorated significantly.' It was probably the quickest hotel checkout in history. Within 5 minutes we were packed and out in the car park. When we got to the hospital Joe's oxygen saturation was really poor and dropping. At one point it had dropped to 60% and despite being given 100% oxygen under huge pressures they couldn't get it up to reasonable levels. Joe's blood pressure was also dropping dangerously low, less than 70/40.
As his blood pressure dropped they gave him drugs to increase it and then as it soared they gave him something else to reduce it. His oxygen saturation was so low that the doctor eventually said 'I am going to try one more thing and if it doesn't work there is nothing else we can do. If you want to stay by his bed you can but you might find it distressing.' That she let us stay with him was a marker of just how close to death Joe was that night; as normally we were asked to leave if the doctors needed to do any treatment. What she did then was to alter the way in which the ventilator pumped the oxygen into Joe's lungs. Conventional ventilation pushes oxygen into the lungs in a different way to normal breathing but the inhale/exhale speed is similar. What the doctor did was to turn the ventilator to what she called 'pant mode' and the noise it made really did sound like panting. My knowledge doesn't stretch to understanding how that worked but as we watched he started to improve. Slowly, very slowly, his oxygen saturation increased until it was holding at 75%, it would then dip a little and then increase further and keep holding at 78%, then dip again and increase to 80%, and so on. In very small but incremental steps he improved until he was stable again. His blood gases were coming back to within normal range and all his other vital signs were holding steady.
The fact that Joe survived that night was, I think, a testament to 2 things. The care that the doctors and nurses gave him and Joe's youth. After watching the wild fluctuations in his condition and what the staff did to stabilise him we learnt that night that the only thing keeping Joe alive was chemistry and machinery. Anna and I both know that the 5th of March was a turning point. For us it was the loss of hope. I think, with hindsight, we both knew after that night that Joe wasn't going to make it. We felt there was a shift, not just in our thinking but in that of the staff caring for him. His body had gone through so much in the previous few weeks and it was clear that it was now failing. We left the hospital that day without hope and completely exhausted. I don't know what kept us putting one foot in front of the other; I only know we kept doing it. This time we didn't ring everyone and ask them to come through. It was as if we knew he was going to die but we knew it was not then. The following day, the Tuesday, the doctors asked to see us again.
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