Last night I had the privilege of speaking with Ryan's pulmonologist at Stanford. I love her. She is an expert in all things lungs and I am grateful that she took the time on a weekend to speak to me. She is thorough and I wish we lived closer to her.
I told her that I had a hard time believing that Ryan has had this disease for most of his life. As I've watched Ryan over the past 2 years and I've seen his lungs change, I just can't bring myself to believe that he's been dealing with this since he was 2. If that was the case, why didn't he have cysts at the age of 10? She agreed with me. She too said she didn't think there was any way that he's had this forever. She said "Whatever caused Ryan's bronchiolitus obliterans is static. It came in and did its damage and then it left." We discussed viruses that could have cause the damage. I've always felt that it was chemotherapy that did the damage. I still believe that it had a role in shaping his lungs for this outcome, but I don't believe that the chemotherapy was the absolute cause. Other things happened. It just doesn't make sense that he was fine for 11 years and then all of a sudden he wasn't.
I asked her to be completely frank with me. As the surgeons have spent time with me over the past few days, they have made Ryan's prognosis direly grim. Yesterday the surgeon told me that Ryan would make cysts with his lungs for the rest of his life. Over and over again. I couldn't help picturing his lungs just constantly filling with these nasty air pockets. I asked our doctor if we should expect to enjoy our last days with Ryan, or if she really felt like he could get past this and live a long life. I asked her if we could do a lung transplant - if one good lung would be better than two bad ones. She talked to me about Ryan's lung function studies and how they haven't really changed over the past 3 years. She said that if he were in dire circumstances, his lung function would be worse. She said that he is not close to being sick enough for a lung transplant and that it would be our last resort.
Dr Conrad recommended a different treatment regimen for Ryan's lungs. She explained in detail how the air-trapping works, and what we can do to clear those airways on a more consistent basis. We will take her recommendations and we will hopefully prolong the use of his lungs. In essence, we will now have a new way of life. I will do everything to have him one more day.
Monday, October 10, 2016
Sunday, October 09, 2016
Stages of Grief
I'm a firm believer of the different stages of grief. What is rarely talked about in that process however is the realization that you can experience those stages in life - not just in death.
On Thursday evening at 5:30 I received a text message from Ryan that said "Rapid onset of breathing problems. Left side not rising like normal called 911". I immediately called him and he could barely answer. I told him to have his boss call me and that I was on my way. So many things happened at the right time. I was at the stop light by the Freeway when the message came through so I was immediately able to flip around and head to him. Earlier in the day I had sent a lengthy email to his boss letting him know of Ryan's medical history and what to do if something happened. Of course I had no idea he would need help THAT DAY!
When I arrived at Ryan's place of employment, his two bosses were standing outside waiting for me. Such gentlemen. I did my best to maintain composure and we talked as we rode the elevator to the 3rd floor. They told me that Ryan was calm and he was breathing and that the paramedics had been working on him.
As we entered the room one of his bosses said "Your son is brilliant, he has a bright future." I immediately replied without thinking "Yes, if we can just keep him alive."
The paramedics briefed me on all that they had done. O2 stats were normal. EKG normal. I gave them his lung history and told them that our concern was that he could have a collapsed lung. They listened to him and said "He sounds fine." Ok - sounds normal. I asked if he had a fever. Ryan has a lower body temperature than most people so if he is fevering it will register as a normal body temperature. 98.6 is a low grade fever for him. Ryan's temp was 96.4. Normal.
One of the paramedics then told me that I needed to make sure that Ryan was seen by his primary care physician by the following morning. I replied that Ryan would be seen by someone tonight. We weren't waiting until morning.
The paramedics then told me that they did not recommend that he be transported via ambulance as all of his vitals checked out. They helped Ryan up and he walked less than 10 steps and said he couldn't take another step. He was then loaded on to the stretcher and they told me to meet them in the parking lot and I could then take him on to be seen. I stayed back for a couple of minutes to thank Ryan's bosses for all that they had done to help Ryan. When I got to the hallway Brett made the comment that I needed to hurry because the paramedics were waiting for me.
I got outside and Ryan forcefully said "AMBULANCE!" The paramedic that had interacted with me the most said "He wants a ride in the ambulance, but just so you know he can either be in pain in your car, or he can be in pain in the ambulance because we cannot give him medication." I told them I'd talk with Ryan for a minute and I asked him if they could just walk the stretcher over to the car. He said "Mom, I can't make it in the car. I need the ambulance." I turned to the paramedic and told him that Ryan preferred that he get a ride in the ambulance and that I would just meet them at the hospital.
Ryan was transported by ambulance to Utah Valley Hospital. When they wheeled him in he was on oxygen. I said "Oh, things got worse and you put him on oxygen?" The gentleman replied, "Oxygen was given to him by his request. We're not sure he really needed it." Noted.
Within minutes of him being in the ER a chest X-ray was preformed and we learned that his left lung had collapsed. When the announcement was made, the paramedics both hung their heads. Ryan was right. He was in a state of emergency. A great lesson to a group of paramedics who have never seen this before.
Within the next 20 minutes or so a chest tube was placed and under heavy sedation Ryan declared to everyone in the room that it feels much better to breathe with two lungs instead of one. Once Ryan was stable, they transported him to Primary Children's in Salt Lake City. He spent the night in the PICU, and then we were moved to the regular floor by mid afternoon.
We don't know what caused the lung collapse. There was speculation that he had formed more cysts in his left lung this time. A CT scan was preformed Friday night and there was a tiny cyst - 4mm in size, but nothing more. I don't believe it was a cyst that caused the collapse.
Ryan is now at a higher risk of lung collapse again, a direct result of this awful lung disease. Tomorrow 10/10/16, Ryan will have a lung procedure that will get the lung to adhere to the chest wall.
So what does this have to do with grief? While my emotions are much more in check today than they were when I got here on Thursday night, I very much felt the stages of grief - mostly anger. I've read stories of people who are so inspirational. Kids who have such a bright future. Brilliant kids who affect the lives of everyone they come in contact with. I have shed tears as I've read the stories of the young man with cancer, who passed away just shy of graduating high school. I've mourned the loss of the stranger. And now that stranger is my son. A young man with such a bright future. A boy with such brilliance that adults shake their heads at the vast knowledge that he shares. I still don't know what lies ahead. Perhaps he will live a very long life. But. Ryan's lungs are very, very sick. They are a silent, invisible killer. And all I can do is sit by and watch it all happen. I'm angry that I can't remove this cup from him. I'm angry at well meaning people who think they need to advise me on how to care for my son. I'm angry at the people who feel like this is their story to tell. I'm angry that I have to correct incorrect information. I'm angry that I have to teach medical professionals -- the very men and women whom I have to pay to care for my son. My heart is tender as I anticipate sending him under the knife yet again. A year ago I didn't know what to expect. Today I know exactly what to expect and I know that for the next few days I'm going to sit and watch my son suffer. I'm going to beg nurses to please keep his meds on the clock around the clock. I fear the loss. I'm trying so hard to allow Ryan's mission on this earth to be fulfilled. I'm trying to understand if now is the time for him to leave his earthy home. Yet, I'm also trying to have as much hope as I can.A hope that will allow him to heal and go to the Masquerade ball in 2 weeks.
Through every single day I know that I will still experience the stages of grief. And every day I will get up and face the day.
On Thursday evening at 5:30 I received a text message from Ryan that said "Rapid onset of breathing problems. Left side not rising like normal called 911". I immediately called him and he could barely answer. I told him to have his boss call me and that I was on my way. So many things happened at the right time. I was at the stop light by the Freeway when the message came through so I was immediately able to flip around and head to him. Earlier in the day I had sent a lengthy email to his boss letting him know of Ryan's medical history and what to do if something happened. Of course I had no idea he would need help THAT DAY!
When I arrived at Ryan's place of employment, his two bosses were standing outside waiting for me. Such gentlemen. I did my best to maintain composure and we talked as we rode the elevator to the 3rd floor. They told me that Ryan was calm and he was breathing and that the paramedics had been working on him.
As we entered the room one of his bosses said "Your son is brilliant, he has a bright future." I immediately replied without thinking "Yes, if we can just keep him alive."
The paramedics briefed me on all that they had done. O2 stats were normal. EKG normal. I gave them his lung history and told them that our concern was that he could have a collapsed lung. They listened to him and said "He sounds fine." Ok - sounds normal. I asked if he had a fever. Ryan has a lower body temperature than most people so if he is fevering it will register as a normal body temperature. 98.6 is a low grade fever for him. Ryan's temp was 96.4. Normal.
One of the paramedics then told me that I needed to make sure that Ryan was seen by his primary care physician by the following morning. I replied that Ryan would be seen by someone tonight. We weren't waiting until morning.
The paramedics then told me that they did not recommend that he be transported via ambulance as all of his vitals checked out. They helped Ryan up and he walked less than 10 steps and said he couldn't take another step. He was then loaded on to the stretcher and they told me to meet them in the parking lot and I could then take him on to be seen. I stayed back for a couple of minutes to thank Ryan's bosses for all that they had done to help Ryan. When I got to the hallway Brett made the comment that I needed to hurry because the paramedics were waiting for me.
I got outside and Ryan forcefully said "AMBULANCE!" The paramedic that had interacted with me the most said "He wants a ride in the ambulance, but just so you know he can either be in pain in your car, or he can be in pain in the ambulance because we cannot give him medication." I told them I'd talk with Ryan for a minute and I asked him if they could just walk the stretcher over to the car. He said "Mom, I can't make it in the car. I need the ambulance." I turned to the paramedic and told him that Ryan preferred that he get a ride in the ambulance and that I would just meet them at the hospital.
Ryan was transported by ambulance to Utah Valley Hospital. When they wheeled him in he was on oxygen. I said "Oh, things got worse and you put him on oxygen?" The gentleman replied, "Oxygen was given to him by his request. We're not sure he really needed it." Noted.
Within minutes of him being in the ER a chest X-ray was preformed and we learned that his left lung had collapsed. When the announcement was made, the paramedics both hung their heads. Ryan was right. He was in a state of emergency. A great lesson to a group of paramedics who have never seen this before.
Within the next 20 minutes or so a chest tube was placed and under heavy sedation Ryan declared to everyone in the room that it feels much better to breathe with two lungs instead of one. Once Ryan was stable, they transported him to Primary Children's in Salt Lake City. He spent the night in the PICU, and then we were moved to the regular floor by mid afternoon.
We don't know what caused the lung collapse. There was speculation that he had formed more cysts in his left lung this time. A CT scan was preformed Friday night and there was a tiny cyst - 4mm in size, but nothing more. I don't believe it was a cyst that caused the collapse.
Ryan is now at a higher risk of lung collapse again, a direct result of this awful lung disease. Tomorrow 10/10/16, Ryan will have a lung procedure that will get the lung to adhere to the chest wall.
So what does this have to do with grief? While my emotions are much more in check today than they were when I got here on Thursday night, I very much felt the stages of grief - mostly anger. I've read stories of people who are so inspirational. Kids who have such a bright future. Brilliant kids who affect the lives of everyone they come in contact with. I have shed tears as I've read the stories of the young man with cancer, who passed away just shy of graduating high school. I've mourned the loss of the stranger. And now that stranger is my son. A young man with such a bright future. A boy with such brilliance that adults shake their heads at the vast knowledge that he shares. I still don't know what lies ahead. Perhaps he will live a very long life. But. Ryan's lungs are very, very sick. They are a silent, invisible killer. And all I can do is sit by and watch it all happen. I'm angry that I can't remove this cup from him. I'm angry at well meaning people who think they need to advise me on how to care for my son. I'm angry at the people who feel like this is their story to tell. I'm angry that I have to correct incorrect information. I'm angry that I have to teach medical professionals -- the very men and women whom I have to pay to care for my son. My heart is tender as I anticipate sending him under the knife yet again. A year ago I didn't know what to expect. Today I know exactly what to expect and I know that for the next few days I'm going to sit and watch my son suffer. I'm going to beg nurses to please keep his meds on the clock around the clock. I fear the loss. I'm trying so hard to allow Ryan's mission on this earth to be fulfilled. I'm trying to understand if now is the time for him to leave his earthy home. Yet, I'm also trying to have as much hope as I can.A hope that will allow him to heal and go to the Masquerade ball in 2 weeks.
Through every single day I know that I will still experience the stages of grief. And every day I will get up and face the day.
Subscribe to:
Posts (Atom)