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.
Tuesday, February 09, 2016
On Borrowed Faith
It's been a long time since I had to lean on the faith of others. I have been blessed in my life to know certain things. I've had experiences that have taught me lessons in which I cannot deny that there is a Higher power, who in all His wisdom, strengthens me when I am weak. As the world around me spirals downward, I often find myself grasping for any lifeline I can find. On those days I am fortunate to have my past experiences recalled to my mind. There are just too many things that have happened to me for me to deny there is a God.
Even knowing what I know though, Ryan's surgery was a trial I don't care to repeat. I have contemplated whether or not to share my thoughts on my blog, but they aren't going away. Perhaps there is someone out there that could benefit from my story.
Two years ago we were sitting in church and our bishop began reading a list of names of people in our area who could use our faith and prayers. He had asked if we minded if Ryan was added to the list. We discussed it as a family, and we felt that it was ok to include Ry. As the names were read, my heart began to pound and my body began to shake. I knew his name was coming. We had been private about our situation until that point. Fast Sunday was a week away and the bishop had asked the ward to please fast and pray for everyone he had named. Ryan's name was on the list with 2 cancer patients. I think the fact that he made the list made it all the more real to me that we were in a serious situation.
Fast Sunday came and the meetings went as usual. As I was walking out the door that day, a father stopped me and let me know that his 5-year old twins fasted for Ryan. I was completely overcome with emotion. Fasting for 2 solid meals, or sometimes a full 24 hours is hard. These two young kids wanted Ryan to get better, and they felt like it was important that they fast for him. Wow.
Fast forward 2 years and here we are sitting in a hospital room. Our entire family felt like we were going to be saying goodbye to Ryan for the last time. Every one of us. I prepared myself for it, even though I knew I wasn't ready, I was prepared to submit my will to my Heavenly Father's. If it was time to call Ryan home, I knew that I would be supported in some way.
Day 2 for Ryan was difficult. Pain levels were so high, and as I sat on the couch watching his back arch, and his respiratory rate soar, I prayed. All I could do was pray. Pray for relief. Pray for his body to heal. He was alive after surgery. I just needed him to be alive to bring him home. I asked in my prayer why when we all felt that he wouldn't make it through surgery, was he still with us. My mind was taken back to that Sunday two years earlier - to two 5-year old twins who were fasting for my son. I was then reminded of the hundreds of people who were praying for him now. It was not my faith that was keeping him here. It was theirs. The miracle that I so desperately wanted was being granted because of the faith and prayers of so many people. I was living on borrowed faith.
Even knowing what I know though, Ryan's surgery was a trial I don't care to repeat. I have contemplated whether or not to share my thoughts on my blog, but they aren't going away. Perhaps there is someone out there that could benefit from my story.
Two years ago we were sitting in church and our bishop began reading a list of names of people in our area who could use our faith and prayers. He had asked if we minded if Ryan was added to the list. We discussed it as a family, and we felt that it was ok to include Ry. As the names were read, my heart began to pound and my body began to shake. I knew his name was coming. We had been private about our situation until that point. Fast Sunday was a week away and the bishop had asked the ward to please fast and pray for everyone he had named. Ryan's name was on the list with 2 cancer patients. I think the fact that he made the list made it all the more real to me that we were in a serious situation.
Fast Sunday came and the meetings went as usual. As I was walking out the door that day, a father stopped me and let me know that his 5-year old twins fasted for Ryan. I was completely overcome with emotion. Fasting for 2 solid meals, or sometimes a full 24 hours is hard. These two young kids wanted Ryan to get better, and they felt like it was important that they fast for him. Wow.
Fast forward 2 years and here we are sitting in a hospital room. Our entire family felt like we were going to be saying goodbye to Ryan for the last time. Every one of us. I prepared myself for it, even though I knew I wasn't ready, I was prepared to submit my will to my Heavenly Father's. If it was time to call Ryan home, I knew that I would be supported in some way.
Day 2 for Ryan was difficult. Pain levels were so high, and as I sat on the couch watching his back arch, and his respiratory rate soar, I prayed. All I could do was pray. Pray for relief. Pray for his body to heal. He was alive after surgery. I just needed him to be alive to bring him home. I asked in my prayer why when we all felt that he wouldn't make it through surgery, was he still with us. My mind was taken back to that Sunday two years earlier - to two 5-year old twins who were fasting for my son. I was then reminded of the hundreds of people who were praying for him now. It was not my faith that was keeping him here. It was theirs. The miracle that I so desperately wanted was being granted because of the faith and prayers of so many people. I was living on borrowed faith.
Wednesday, February 03, 2016
Pinch-y Lobe
Over the past few days we've enjoyed looking back at Brett's blog and laughing at the things the kids have said and done.
Our kids love pinching each other's ear lobes. I don't know why. It's something they do. Sydney has made a deal with Ryan that he can only pinch every other day.
Today Sydney yelled to Ryan "Ry - what time is it?"
He replied, "It's pinch-y lobe o'clock"
Our kids love pinching each other's ear lobes. I don't know why. It's something they do. Sydney has made a deal with Ryan that he can only pinch every other day.
Today Sydney yelled to Ryan "Ry - what time is it?"
He replied, "It's pinch-y lobe o'clock"
Tuesday, November 17, 2015
Going Home
We've been away from home for 17 days. When we originally decided to go to California we were told to plan on 10 days. In all reality I thought we would be gone a week - although, deep down I knew this trip wouldn't be predictable. There was something different about all of it.
Ryan was released from the hospital on Sunday. He still has air around his lungs, but they believe his body will eventually absorb it. We have stopped 1/2 way so that we aren't driving late in to the night.
I love Ryan. My heart aches for him. His lungs are thick. He will have to always be vigilant about his health. I think hearing the surgeon say that a normal lung can be picked up like a sheet, and Ryan's lung was dense was more of a realization to me that he has been affected by a serious disease.
I believe we have experienced miracles with Ryan the past 2 weeks. Ry didn't feel like he was going to make it out of surgery. He wrote a goodbye message to his friends. He teared up as he was wheeled away - he told me he didn't think he was ever going to see me again in this life. So many people prayed for him. Their prayers were heard and answered.
He is alive. He still feels pain. He loves more than anyone I know. His mind is so wonderful. He is brilliant and kind. And his sister, and his mom and dad get to enjoy him for a bit longer. We're going home.
Ryan was released from the hospital on Sunday. He still has air around his lungs, but they believe his body will eventually absorb it. We have stopped 1/2 way so that we aren't driving late in to the night.
I love Ryan. My heart aches for him. His lungs are thick. He will have to always be vigilant about his health. I think hearing the surgeon say that a normal lung can be picked up like a sheet, and Ryan's lung was dense was more of a realization to me that he has been affected by a serious disease.
I believe we have experienced miracles with Ryan the past 2 weeks. Ry didn't feel like he was going to make it out of surgery. He wrote a goodbye message to his friends. He teared up as he was wheeled away - he told me he didn't think he was ever going to see me again in this life. So many people prayed for him. Their prayers were heard and answered.
He is alive. He still feels pain. He loves more than anyone I know. His mind is so wonderful. He is brilliant and kind. And his sister, and his mom and dad get to enjoy him for a bit longer. We're going home.
Saturday, November 14, 2015
Still Here
It's Saturday and we are still here. We have now been in the hospital for almost 2 weeks. Ry is ready to get out of here and I don't blame him. Yesterday they removed the chest tube. The air leak seemed to have resolved itself and so they decided to remove the tube. The plan was to remove the tube and then take a chest X-ray in the morning.
I went to the Ronald McDonald house last night at 7:30. Ryan had fallen asleep and I went ahead and went to get some sleep of my own. I read for a couple of hours and had lights out at 10. I woke up at 6:45am this morning and got up and showered. I didn't want to be too late getting to the hospital as I didn't want Ryan to be alone too long and I wanted to be able to speak with the doctors. By the time I got to the hospital at 7:30 the doctors had already come and gone and a chest X-ray had been taken. Ryan's lung was collapsing. Boo!
They ordered another X-Ray at noon and as the radiology tech was leaving the room the doctor came in and looked at the image. There had been no change since morning. This was good news.
So, the plan for now is to wait. They will do another X-ray tomorrow morning and if there is no change, they will release us to go to the Ronald McDonald house. I am not in a hurry to get home. Yes, I'd like to go home, but there is safety and security knowing that we are in the hospital where they can do what they need to for us.
I went to the Ronald McDonald house last night at 7:30. Ryan had fallen asleep and I went ahead and went to get some sleep of my own. I read for a couple of hours and had lights out at 10. I woke up at 6:45am this morning and got up and showered. I didn't want to be too late getting to the hospital as I didn't want Ryan to be alone too long and I wanted to be able to speak with the doctors. By the time I got to the hospital at 7:30 the doctors had already come and gone and a chest X-ray had been taken. Ryan's lung was collapsing. Boo!
They ordered another X-Ray at noon and as the radiology tech was leaving the room the doctor came in and looked at the image. There had been no change since morning. This was good news.
So, the plan for now is to wait. They will do another X-ray tomorrow morning and if there is no change, they will release us to go to the Ronald McDonald house. I am not in a hurry to get home. Yes, I'd like to go home, but there is safety and security knowing that we are in the hospital where they can do what they need to for us.
Wednesday, November 11, 2015
Same Story - What it's Like
Today I posted an update on Facebook to my family and friends. We are still in the hospital. Ryan's lung is still leaking air. We will be here until it stops leaking air. When it stops, they will turn the suction off of the wall. We will then be here for an additional 24-hours at least and we will be released to go home. From there we will go to the Ronald McDonald house. We will stay there until Ryan feels up to traveling home. Depending on how he feels, we will either stop and sleep at a hotel on the way home, or we will drive straight through. We will take it hour by hour at that point.
I've had so many comments like this "I can't imagine what you must be going through." and "I'm so sorry. This must be so awful."
So, this is what it is like.
We get up every morning. We have a warm shower, and a warm breakfast. We make our bed in the Ronald McDonald House, or we give our dirty linens to the hospital staff. The doctors come in to the room and they ask Ryan to cough. So far, a bubble is released into his chest tube collector and we know that we still have a leak. We know then that the plan is to do the same thing we did yesterday. We have lunch, we split our time with Sydney, we have dinner. Sometimes we do something fun with Sydney. We take turns staying the night with Ryan so that on the off nights we get a full night's sleep. When Brett goes home, I will leave Ryan every night and come back in the morning. That may sound awful to some, but it will be the only way I will be able to function alone. We did it this way 15 years ago because there was no other way. At least now Ryan can push his own call button.
There is nothing horrible about our situation. No, we aren't home. Yes, it is a bit inconvenient. But. We are among some of the top doctors in the nation. We are at a prestigious medical teaching hospital. We are cared for in the best of ways. Ryan is not in pain. We are just waiting. Every day we are waiting. And we will continue to wait as long as we need to to ensure his safe return home. That's what it is like.
I've had so many comments like this "I can't imagine what you must be going through." and "I'm so sorry. This must be so awful."
So, this is what it is like.
We get up every morning. We have a warm shower, and a warm breakfast. We make our bed in the Ronald McDonald House, or we give our dirty linens to the hospital staff. The doctors come in to the room and they ask Ryan to cough. So far, a bubble is released into his chest tube collector and we know that we still have a leak. We know then that the plan is to do the same thing we did yesterday. We have lunch, we split our time with Sydney, we have dinner. Sometimes we do something fun with Sydney. We take turns staying the night with Ryan so that on the off nights we get a full night's sleep. When Brett goes home, I will leave Ryan every night and come back in the morning. That may sound awful to some, but it will be the only way I will be able to function alone. We did it this way 15 years ago because there was no other way. At least now Ryan can push his own call button.
There is nothing horrible about our situation. No, we aren't home. Yes, it is a bit inconvenient. But. We are among some of the top doctors in the nation. We are at a prestigious medical teaching hospital. We are cared for in the best of ways. Ryan is not in pain. We are just waiting. Every day we are waiting. And we will continue to wait as long as we need to to ensure his safe return home. That's what it is like.
Tuesday, November 10, 2015
Day 8 - A Better Day - More of the Same
Ryan's lung is still leaking. One of his doctors feels so bad about it. I don't feel bad. I have just changed my expectations. We are now on day 10 of being in CA. I have no urgency to return home until I absolutely know that my son is ok.
Ryan had a great day in terms of pain management and being able to eat. I spent the late afternoon/evening with him while Brett took Syd on a date. I have been the one to do extra things with Syd to keep her entertained and she and Brett haven't exactly gotten along all that well. We decided that it was time for him to spend some time with her that wasn't forcing her to do her homework.
Sydney and I had purchased some chocolates earlier in the day so that Ryan could give them to the nurses and techs who have cared for him this hospital stay. I wrote thank you notes and had Ryan sign them. He delivered a couple of the notes and thanked the staff who have cared for him today.
At 4:30 Ryan told me that it was dinner time. That is the first time he has mentioned to me that he wants dinner. I got out the menu and nothing sounded good. I asked him if he wanted me to go somewhere else to grab dinner. There are a few food places somewhat close to the hospital. He said that a steak burrito sounded really good. There is a restaurant on the Stanford campus that sells steak burritos. It is 1.2 miles from the hospital. I knew that I could get there in under 15 minutes and then head back. I decided I would do that as it was more important to me that he have a good dinner than anything else.
I headed outside the hospital and tried following the directions on my Google Maps. It proved to be harder than I thought it would be. They are currently building a new hospital next to the current hospital and there is a lot of construction. Every place I was told to walk was cut off because of construction. It was dark and I knew I wouldn't be able to find my way very well in the dark. I stopped and spoke with the parking agents and neither of them knew where I needed to go. So, I called Ryan and told him I would have to go somewhere else.
I ran to the Stanford mall to see what my options were there. I found a Chipotle and called Ry again and asked him if he was interested in food from there. He agreed that a burrito sounded good. I ordered and ran back to the hospital. I was gone longer than I had hoped, but Ryan ate 1/2 the burrito and I was happy he did. I finished what he could not eat. I welcomed the exercise. It has been hard to get any extra exercise in between the back and forth hospital schedules.
Ryan had a great day in terms of pain management and being able to eat. I spent the late afternoon/evening with him while Brett took Syd on a date. I have been the one to do extra things with Syd to keep her entertained and she and Brett haven't exactly gotten along all that well. We decided that it was time for him to spend some time with her that wasn't forcing her to do her homework.
Sydney and I had purchased some chocolates earlier in the day so that Ryan could give them to the nurses and techs who have cared for him this hospital stay. I wrote thank you notes and had Ryan sign them. He delivered a couple of the notes and thanked the staff who have cared for him today.
At 4:30 Ryan told me that it was dinner time. That is the first time he has mentioned to me that he wants dinner. I got out the menu and nothing sounded good. I asked him if he wanted me to go somewhere else to grab dinner. There are a few food places somewhat close to the hospital. He said that a steak burrito sounded really good. There is a restaurant on the Stanford campus that sells steak burritos. It is 1.2 miles from the hospital. I knew that I could get there in under 15 minutes and then head back. I decided I would do that as it was more important to me that he have a good dinner than anything else.
I headed outside the hospital and tried following the directions on my Google Maps. It proved to be harder than I thought it would be. They are currently building a new hospital next to the current hospital and there is a lot of construction. Every place I was told to walk was cut off because of construction. It was dark and I knew I wouldn't be able to find my way very well in the dark. I stopped and spoke with the parking agents and neither of them knew where I needed to go. So, I called Ryan and told him I would have to go somewhere else.
I ran to the Stanford mall to see what my options were there. I found a Chipotle and called Ry again and asked him if he was interested in food from there. He agreed that a burrito sounded good. I ordered and ran back to the hospital. I was gone longer than I had hoped, but Ryan ate 1/2 the burrito and I was happy he did. I finished what he could not eat. I welcomed the exercise. It has been hard to get any extra exercise in between the back and forth hospital schedules.
Day 7 - A little step backwards
This morning we brought Ryan breakfast. He loves the Maple Pecan Clusters cereal that Trader Joe's carries. I sent Brett a message and asked if Ryan wanted some cereal. He did. Hooray! Syd and I picked up some fruit from the grocery store and headed to the hospital. We don't normally shop on Sunday, but we made an exception this week since we didn't have what we needed stored at the Ronald McDonald House.
Ryan ate two bowls of cereal and a piece of toast for breakfast. He was feeling great so Sydney and I headed out. We were feeling a bit cluttered in the RMH so we decided to clean the room. We cleaned the bathroom, vacuumed the floors, and repacked the suitcases as all of the clothes were just haphazardly thrown in them. Syd made the comment that she felt so much better when things were clean. Agreed. Maybe we can remember that sentiment when we go home.
Around 2pm I received a text from Brett telling me that something had happened while Ryan was in the restroom and the pain was so severe he couldn't lift himself off of the toilet. It escalated such that they had to bring in the big guns. They gave him an IV narcotic and Brett and the male nurse lifted Ryan off the toilet. So, lest you think that Brett cannot lift Ryan himself, let me explain. You cannot lift Ryan from underneath his arms. He has two incisions on the right side of his back making it impossible to put your arm up underneath his right arm. His chest tube is also on his right side. If you put your arm up underneath his left arm to lift him, it pulls the chest tube at a diagonal and it is extremely painful. Ryan also braces himself for any pain and becomes a stiff board. He is extremely hard to move in any circumstance because he cannot help you.
They were able to get him back on the bed and Brett said he was resting. Shortly after that text, within minutes, I received another text saying never mind. Ryan's pain was at an 8. We had definitely gone backwards. No Bueno.
The pain set several things in to motion - no food for loss of appetite, nausea because of narcotics on an empty stomach, and even more pain. Ryan was back to being miserable.
Here is the note I sent the family.
Ry was quite nauseous today and he didn't eat well. They weighed him today and he has lost 3 lbs. He is 5'6" and he weighs 95 lbs. Hopefully the dietitian will let us out of here. She has already discussed the need for us to feed him more
Ryan ate two bowls of cereal and a piece of toast for breakfast. He was feeling great so Sydney and I headed out. We were feeling a bit cluttered in the RMH so we decided to clean the room. We cleaned the bathroom, vacuumed the floors, and repacked the suitcases as all of the clothes were just haphazardly thrown in them. Syd made the comment that she felt so much better when things were clean. Agreed. Maybe we can remember that sentiment when we go home.
Around 2pm I received a text from Brett telling me that something had happened while Ryan was in the restroom and the pain was so severe he couldn't lift himself off of the toilet. It escalated such that they had to bring in the big guns. They gave him an IV narcotic and Brett and the male nurse lifted Ryan off the toilet. So, lest you think that Brett cannot lift Ryan himself, let me explain. You cannot lift Ryan from underneath his arms. He has two incisions on the right side of his back making it impossible to put your arm up underneath his right arm. His chest tube is also on his right side. If you put your arm up underneath his left arm to lift him, it pulls the chest tube at a diagonal and it is extremely painful. Ryan also braces himself for any pain and becomes a stiff board. He is extremely hard to move in any circumstance because he cannot help you.
They were able to get him back on the bed and Brett said he was resting. Shortly after that text, within minutes, I received another text saying never mind. Ryan's pain was at an 8. We had definitely gone backwards. No Bueno.
The pain set several things in to motion - no food for loss of appetite, nausea because of narcotics on an empty stomach, and even more pain. Ryan was back to being miserable.
Here is the note I sent the family.
Update Day 7
This morning a chest xray was taken again and Ryan's lung stayed inflated through the night. Great news! The plan for today was to keep everything the same. Suction at level 10 and then turn off suction tomorrow morning.
Around 1:30 today Ry had an issue in the restroom. His pain level increased such that he couldn't lift himself off the toilet (sorry for the TMI). It is difficult when Ry is needing to be moved. You cannot put your arms underneath him because 1 - he has two incisions on his back so you can't use the left side, and 2 - he has the chest tube. If you try to lift on his left side, it pulls his chest tube. They had to give him a narcotic in his IV and Brett and Ryan's male nurse had to lift him. Brett sent me a text message telling me that Ryan was finally resting and then a few minutes later he said never mind - his pain is at an 8. More IV meds were given and rest was finally achieved.
They ordered another xray to make sure nothing was happening to cause the pain. The results came back and his lung had collapsed about 2mm - they are not concerned with the small change so they will not change course. Tomorrow is a new day. He'll receive meds here in a few minutes and we will hope for an uneventful night.
Sunday, November 08, 2015
Day 6 - Not too soon
The doctors came in this morning and said that a chest X-ray would happen around 7:30am. If everything looked ok, they would pull the chest tube and observe him for a few hours and we would be released to go home. I sent Brett a message and told him to be sure to get Ryan's clothes together. Comfy pants, socks, t-shirt and comfy shoes. I felt like it would be best if he could have everything ready in case we were released.
The X-Ray tech came in snapped the X-Ray and within an hour we had our answers. We would not be going home today. Ryan's lung had begun to collapse without the suction. They decided to begin suction again and at noon turn the suction down to a '10'. It was currently at '20'. They would take an X-Ray at 3:00pm and let us know the results. This time the results were a little slower coming.
I took Syd to a movie to break up the day. I think this trip has been hard for her. We're back and forth between the hospital every day. We're here for a few hours, and then we're gone for a few hours, then we're back again. We do not have a good wifi signal in our room at the Ronald McDonald House so we don't really have entertainment other than the board game that we have played several times and books that Sydney has no interest in reading.
Syd and I arrived back at the hotel around 5:30 PM. I told Brett to head out and get some dinner and I would ask about the X-ray results. Our nurse came in and I asked if he would please contact the Dr. to see if we needed to go back up on the suction. He agreed and a short time later the Dr was on the phone wanting to speak with me.
Ryan's lung was staying inflated with the new suction. All good news. They would plan to continue this amount of suction and then reassess in the morning.
Below is the update I sent to family -
At the risk of sounding like a total jerk.... I realize that people are trying to be helpful, but I don't update everyone to receive their advice in return. This is not our first rodeo. We are here 24-hours a day with Ryan. We are aware of what he needs, and he is no longer a baby. No decision is made without his consent. We ask him what he feels like he wants and we do everything we can to accommodate him. We will not put him in a car that is not comfortable. We will not force him to drive farther than he is able. We will not rush home when he needs to spend time healing. Everything we have ever done in Ryan's life is in his best interest. Period.
The X-Ray tech came in snapped the X-Ray and within an hour we had our answers. We would not be going home today. Ryan's lung had begun to collapse without the suction. They decided to begin suction again and at noon turn the suction down to a '10'. It was currently at '20'. They would take an X-Ray at 3:00pm and let us know the results. This time the results were a little slower coming.
I took Syd to a movie to break up the day. I think this trip has been hard for her. We're back and forth between the hospital every day. We're here for a few hours, and then we're gone for a few hours, then we're back again. We do not have a good wifi signal in our room at the Ronald McDonald House so we don't really have entertainment other than the board game that we have played several times and books that Sydney has no interest in reading.
Syd and I arrived back at the hotel around 5:30 PM. I told Brett to head out and get some dinner and I would ask about the X-ray results. Our nurse came in and I asked if he would please contact the Dr. to see if we needed to go back up on the suction. He agreed and a short time later the Dr was on the phone wanting to speak with me.
Ryan's lung was staying inflated with the new suction. All good news. They would plan to continue this amount of suction and then reassess in the morning.
Below is the update I sent to family -
Update Day 6 -
This morning the docs came in around 7:30. They ordered a chest xray and said they would return with results. When Radiology comes to the room and it is a painful procedure. A hard film is placed behind Ryan's back and we have to situate him in the bed just right. Any movement in bed aggravates the tube against the chest wall and it is painful. The image was taken and within an hour the doctors were in the room to give us results. The lung was beginning to collapse without suction. There was still a leak. The chest tube would not be coming out today.
They began full suction in the morning. At noon they cut the suction in half and Ryan had another chest xray at 3pm. We just received the results and the lung is back to full inflation. They will continue the suction at 1/2 strength through the night and take another xray in the morning. If it is still inflated, they will trial no suction again tomorrow and we will start the process all over again.
Our miracle for the day - the lung did not fully collapse during the trial of no suction.
At the risk of sounding like a total jerk.... I realize that people are trying to be helpful, but I don't update everyone to receive their advice in return. This is not our first rodeo. We are here 24-hours a day with Ryan. We are aware of what he needs, and he is no longer a baby. No decision is made without his consent. We ask him what he feels like he wants and we do everything we can to accommodate him. We will not put him in a car that is not comfortable. We will not force him to drive farther than he is able. We will not rush home when he needs to spend time healing. Everything we have ever done in Ryan's life is in his best interest. Period.
Day 5 - A new level of awesome
Sydney and I were late getting to the hospital. I felt bad because I didn't rush to get there and Brett missed breakfast waiting for me. I'll do better next time. It is hard knowing when it is ok to go anywhere. Many times the doctors come in first thing in the morning. Their schedule has been different here though. The general surgery team - doctors, and residents, comes in earlier than one should be awake. They teach and learn and brief us for a short time. We then wait for the attending doctor to come in. Brett left around noon and the attending doctor still had not yet come. I told Ryan that I was going to head to the cafeteria and grab a bite to eat, and then I'd hurry back up. I was gone for 15 minutes. The Dr came while I was gone. Of course.
I stepped out of the room and asked if they could have the Dr swing back around. Just when I took a bite she walked in. Strike two for me. She explained to me that they were going to remove suction from Ryan's chest tube for 24 hours and then take an X-ray of his chest. We were surprised at this news as they had told Brett earlier that he still had a leak in his lung. At any rate, this was good news and then there was even talk of us going home. This weekend. I sent Brett a message and told him that they may release us to go home - as in home to UT, not to the Ronald McDonald House. We chatted back and forth about what that meant, and felt that maybe we were rushing things. I spoke to Ryan and he said that even if we did get released from the hospital, he still wanted to stay in the area for a couple of days to make sure his pain was managed. I agreed that was a good plan.
Ryan had his best day. His pain was a 'zero' and he moved to the bathroom a few times. He was no longer attached to the wall so he was able to move a bit more. Below is the update I sent family and friends.
I stepped out of the room and asked if they could have the Dr swing back around. Just when I took a bite she walked in. Strike two for me. She explained to me that they were going to remove suction from Ryan's chest tube for 24 hours and then take an X-ray of his chest. We were surprised at this news as they had told Brett earlier that he still had a leak in his lung. At any rate, this was good news and then there was even talk of us going home. This weekend. I sent Brett a message and told him that they may release us to go home - as in home to UT, not to the Ronald McDonald House. We chatted back and forth about what that meant, and felt that maybe we were rushing things. I spoke to Ryan and he said that even if we did get released from the hospital, he still wanted to stay in the area for a couple of days to make sure his pain was managed. I agreed that was a good plan.
Ryan had his best day. His pain was a 'zero' and he moved to the bathroom a few times. He was no longer attached to the wall so he was able to move a bit more. Below is the update I sent family and friends.
Update - Day 5
Today was our best day so far. The doctors came in this morning and there still showed a leak in Ryan's lung so the plan was to stay on suction with the chest tube for another day. Brett left and I ran down stairs to grab some food for lunch. When I arrived back in the room Ryan said "You'll receive a text from me in 3, 2, 1. Sure enough, the text came in and it said "I'm off suction." I had just missed the Dr - Dang! I stepped out of the room and asked if the Dr could come back around. I took a big bite of food and the Dr walked in - of course - with her group. I quickly finished my bite and she explained to me what would happen. They ordered an X-Ray and they removed the suction. They will order another X-Ray tomorrow morning. If nothing has changed, the tube will come out and we can get out of here.
The original plan was that we would see the pulmonary doc and the surgeon on Wednesday. Later this afternoon we were visited by our bone marrow doc and the surgeon's nurse practitioner. The NP told me that she had spoken with the surgeon and the lung doc and neither of them felt like they really needed to see Ryan in clinic and that we could go home as early as this weekend. Whaaaa?!? After they left the room I asked Ryan what he would like to do. He said he wanted to stay for a couple of days to make sure he is up to sitting 13 1/2 hours in the car. It is hard to know how he will feel at this point because he still has a chest tube and those things don't feel good. At. All. I know I keep saying this, but we will likely know more tomorrow. I think we will stay here at least until Monday or Tuesday to make sure that Ryan is up for the long drive.
Ryan was able to get out of bed today and walk to the restroom. We help him hold the chest tube drain, but he is able to do everything else on his own. His appetite is still tiny. Food sounds so good to him, but by the time it gets here, he just can't bring himself to eat it.
Ryan's funny story of the day - I was feeding him lunch because he was in an awkward position on the bed. He is hard to move so we decided I would just feed him. I placed napkins on his chest and he said in his French accent - "Ooh, I feel so fancy. It makes me want to say En Passant". I laughed and said "What does that mean?" He said, "I don't know, it is a chess term. It means in passing."
I've done a lot of reminiscing today. We've spent so much time in the hospital with Ry. Three months in Los Angeles when Ryan was a baby, 11 days at Primary Children's Hospital when Ryan was a 18 months old, 2 days at PCMC when Ryan had a lung biopsy two years ago and 5 days now. We've stayed in 3 Ronald McDonald houses. He has suffered through the pains of chemotherapy, RSV therapy, multiple IVs, dressing changes, and 2 chest tubes. Through it all, Ryan is happy. The doctors and nurses who care for Ryan love him. We had a doctor visit today who had seen Ryan every day this week. We had never met him before and he watched the progression of this stay. He lightheartedly showed Ryan every position he had been in this week. He then sat and taught us. Learning from these professionals is my most favorite thing of all hospital stays.
I've learned when to leave the hospital and take a break. I've learned when to be an advocate for my child, and when to let it all go. I've learned to get on my knees daily and thank my Heavenly Father. So many miracles happen in the walls of these hospitals every day. You just have to find them. I still have uncertainty. I still wonder what is in store for my son, but I have learned so much from him.
Our miracle(s) for today - No suction, up walking...and talk of the 'H' word.
Friday, November 06, 2015
Day 4 - Baby Steps
Brett came to spell me off around 10am. Ryan had recently received his Oxycodone and he was feeling high on life. His pain number - zero. It was the first time I had heard zero and it was a welcomed number. Ryan's sense of humor has returned. He is a very brilliant kid and very witty. Brett was teasing him and he held up his hand. He asked, "How many fingers?" Ryan replied, "Seven." We all laughed.
I left the hospital and I was tired. Sydney was anxious to show me the soccer field at the Ronald McDonald House. It was everything I had to give her the time she needed. She desperately needs my time. We played soccer for 15-20 minutes and I asked her if we could go lay down. When I am on night duty, I struggle to get back to sleep when I wake up to answer questions, or I hear the nurses come in.
Sydney was hungry, but we are all tired of Mexican food. Don't get me wrong, we all love it. We have just been eating it nearly every day. I offered to take her to Sizzler and she was on board immediately. We both welcomed a salad that we didn't have to pay for by the pound. We drove to Sizzler and as we were driving we passed a Target. I told Sydney that we should stop by Target on the way home and just walk around. We both needed the diversion.
As we pulled in to the parking lot where Sizzler is located, we saw a Payless Shoes. Sydney had purchased a pair of slippers at home and they were the wrong size. I brought them with me along with the receipt in hopes that I could have some time to return them while we were away. I was grateful that Sydney noticed the store and that we had the shoes in the car still, and I had thought to put the receipt in my purse.
Brett sent me a few text messages. Ryan was out of bed and they were bathing him and changing his sheets. I was the one who witnessed that the day before so this was a new experience for Brett. Ryan got light-headed while out of bed and dry heaved a bit. Being up and around was a bit harder on him today.
As Sydney and I were leaving Target, the car was beeping. I said to her "Syd, you need to put your seat belt on." She replied, "Mom, it's your seat belt." I was tired. There would be no more out and about for me until I could get a nap. My state of mind was becoming clouded and I wasn't going to be a hazard on the road. It was time to go home and take a nap.
Syd and I went back to the Ronald McDonald house and decided that we both needed naps. We turned out the lights, closed the blinds and slept for 2 hours.
We returned to the hospital at 6:30pm. Ryan was alert and back to his normal self. His pain continued to be a zero and that made me happy.
Below is the message I sent the family and friends.
Update Day 4 - Today was a great day and I missed it so Brett will have to correct me if I am wrong. Ryan's pain was tolerated very well today. When Brett arrived at the hospital today for the changing of the guard, Ry had just had pain meds. The nurse had just walked in and asked Ryan what his pain number was and he said in his glossy-eyed state "zero". She giggled a little bit and said "wow Ryan, that stuff is really working." Brett walked beside his bed and held up his hand and said "how many fingers?" Ryan made us all laugh when he answered "7".
The chest tube is still draining and his lung was still leaking air today. They will try again tomorrow to remove suction. Once they do that, he will be disconnected from the wall and they will attempt to get him to walk again. Ry sat in a chair today, but this time he nearly passed out and he dry heaved a bit. He's not quite ready to be up for long periods of time.
Ry ate cereal and apple sauce for breakfast, rice for lunch, and 3/4 of a hamburger for dinner. He is feeding himself now and his appetite is slowly returning. One challenge we have faced is that the food takes 45 minutes to arrive. Many times by the time it gets to the room, he no longer wants to eat. It takes coaxing to help him realize that he needs to eat. His recovery has been longer than we originally thought, but I am in no hurry to get him out of there.
My public service announcement for today - Have gratitude. The nurses who care for you and your children work hard. They work 12 hour shifts, but are there longer than that as they pass the baton. Thank them and their techs. Treat them with respect. Thank you nurses.
Today's miracle - Zero pain
I left the hospital and I was tired. Sydney was anxious to show me the soccer field at the Ronald McDonald House. It was everything I had to give her the time she needed. She desperately needs my time. We played soccer for 15-20 minutes and I asked her if we could go lay down. When I am on night duty, I struggle to get back to sleep when I wake up to answer questions, or I hear the nurses come in.
Sydney was hungry, but we are all tired of Mexican food. Don't get me wrong, we all love it. We have just been eating it nearly every day. I offered to take her to Sizzler and she was on board immediately. We both welcomed a salad that we didn't have to pay for by the pound. We drove to Sizzler and as we were driving we passed a Target. I told Sydney that we should stop by Target on the way home and just walk around. We both needed the diversion.
As we pulled in to the parking lot where Sizzler is located, we saw a Payless Shoes. Sydney had purchased a pair of slippers at home and they were the wrong size. I brought them with me along with the receipt in hopes that I could have some time to return them while we were away. I was grateful that Sydney noticed the store and that we had the shoes in the car still, and I had thought to put the receipt in my purse.
Brett sent me a few text messages. Ryan was out of bed and they were bathing him and changing his sheets. I was the one who witnessed that the day before so this was a new experience for Brett. Ryan got light-headed while out of bed and dry heaved a bit. Being up and around was a bit harder on him today.
As Sydney and I were leaving Target, the car was beeping. I said to her "Syd, you need to put your seat belt on." She replied, "Mom, it's your seat belt." I was tired. There would be no more out and about for me until I could get a nap. My state of mind was becoming clouded and I wasn't going to be a hazard on the road. It was time to go home and take a nap.
Syd and I went back to the Ronald McDonald house and decided that we both needed naps. We turned out the lights, closed the blinds and slept for 2 hours.
We returned to the hospital at 6:30pm. Ryan was alert and back to his normal self. His pain continued to be a zero and that made me happy.
Below is the message I sent the family and friends.
Update Day 4 - Today was a great day and I missed it so Brett will have to correct me if I am wrong. Ryan's pain was tolerated very well today. When Brett arrived at the hospital today for the changing of the guard, Ry had just had pain meds. The nurse had just walked in and asked Ryan what his pain number was and he said in his glossy-eyed state "zero". She giggled a little bit and said "wow Ryan, that stuff is really working." Brett walked beside his bed and held up his hand and said "how many fingers?" Ryan made us all laugh when he answered "7".
The chest tube is still draining and his lung was still leaking air today. They will try again tomorrow to remove suction. Once they do that, he will be disconnected from the wall and they will attempt to get him to walk again. Ry sat in a chair today, but this time he nearly passed out and he dry heaved a bit. He's not quite ready to be up for long periods of time.
Ry ate cereal and apple sauce for breakfast, rice for lunch, and 3/4 of a hamburger for dinner. He is feeding himself now and his appetite is slowly returning. One challenge we have faced is that the food takes 45 minutes to arrive. Many times by the time it gets to the room, he no longer wants to eat. It takes coaxing to help him realize that he needs to eat. His recovery has been longer than we originally thought, but I am in no hurry to get him out of there.
My public service announcement for today - Have gratitude. The nurses who care for you and your children work hard. They work 12 hour shifts, but are there longer than that as they pass the baton. Thank them and their techs. Treat them with respect. Thank you nurses.
Today's miracle - Zero pain
Thursday, November 05, 2015
Day 3 - A Better Day
Day three was a much better day. Ryan has been much more awake today and his sense of humor is shining through. I spent the night at the Ronald McDonald House with Sydney and I received a text from Ryan first thing with a copy of the hospital menu. He took a picture of the 'meatloaf' item and told me that he was going to order that for me. I hate meatloaf. He gave me a good laugh.
I arrived at the hospital close to 10am. Brett wanted me to come as soon as I could as the doctors typically round in the morning and come by and brief the parents. Today they didn't come until after noon. Brett was already gone by then.
We got Ryan out of bed today. He received a sponge bath and got clean sheets. He was so gracious to the tech giving him the bath and I was so proud of him. He kept thanking her. I was so proud of him. He is such a sweet soul. I continued to take pictures as they were moving him. I think the nurses may have thought I was a bit crazy but hey- I need to document this stuff. One of Ryan's favorite pictures from when he was a baby is the one we were able to get with his central line dressing off and the line coming out of his chest. We now have a picture of him with a larger tube coming out of his side. He will appreciate it one day.
I arrived at the hospital close to 10am. Brett wanted me to come as soon as I could as the doctors typically round in the morning and come by and brief the parents. Today they didn't come until after noon. Brett was already gone by then.
We got Ryan out of bed today. He received a sponge bath and got clean sheets. He was so gracious to the tech giving him the bath and I was so proud of him. He kept thanking her. I was so proud of him. He is such a sweet soul. I continued to take pictures as they were moving him. I think the nurses may have thought I was a bit crazy but hey- I need to document this stuff. One of Ryan's favorite pictures from when he was a baby is the one we were able to get with his central line dressing off and the line coming out of his chest. We now have a picture of him with a larger tube coming out of his side. He will appreciate it one day.
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| If you look closely you can see the lines on Ryan's back. They almost look like stretch marks. These wrinkles are from his bedding that we were unable to get smoothed out the day before. The two incisions on his back are where the surgeon accessed his lungs. |
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| Sitting up in the chair. He looks a bit like death warmed over. |
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| Dad's turn to feed breakfast |
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| This shower cap was pretty snazzy. It is wet on the inside. You place it over the patients head and massage. |
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| Clean hair |
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| The chest tube. |
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| As Sydney and I were walking out of the hospital for the night, she pointed out this painting and said "Look mom, it is doing the whip"
Here is the update I sent to the family for day 3
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Wednesday, November 04, 2015
Day Two - Oh the Pain
Whenever you are in a hospital, the night shift is the worst. We had an amazing nurse named Rico. He was a Godsend. He was so gentle with Ryan and was so quiet and respectful when he entered the room. He knew right away that Ryan needed fluid and he made sure he received it ASAP. The only problem with Rico was that he couldn't hear me unless he was looking straight at me. So, we spent the night asking and answering each other questions - none of which were answered the way I had asked, or how he had because -- he couldn't hear me. That's ok. He took great care of my boy.
By 4:30 am I had finally slipped in to a deep sleep. The couch/bed here is not terrible and when I could fall asleep I did sleep quite well. At 5:45am I got a terrible wake up call. I didn't hear the door open, but I heard a very.loud GOOD MORNING! It startled me and I was ready to jump off the couch and push whoever it was out of the room. I turned over and tried to decipher who it was. She was young and was crouched on the ground looking at the drainage from Ryan's chest tube. I'm sure I sounded amazing when I asked if she was a doctor. She cheerfully told me that she was one of the residents. Ah - of course. She hadn't yet learned the proper etiquette of entering a room at 5:45AM! She wanted to listen to Ryan and then she wanted to roll him over so she could listen to his back. UH - NO! Sorry. Not sure who you are. Don't really care. And you are NOT touching him. If the doctors who come in say he can lay there because of pain, you are not moving him. So, in my not so nice/nice voice I told her that she may not touch him. Nobody had tried turning him. Nobody cared that he hadn't moved, and nobody had cared to listen to his back. She left the room and told me that she would return later with the rest of the General surgery team.
We met several doctors throughout the day. We were told that today would be the worst as far as pain went. It was hard to imagine that the pain would be harder than what he had experienced the day before. It wasn't long before I didn't have to imagine it. The decision was made to space Ryan's meds out. I don't know who had made that decision. The only group who had been to see us at that point was the General surgery team. I wrote the following update for our family and friends.
Update Day 2 - Today was a rough day for most of the day. Pain management kind of went down the tube. There was a disconnect somewhere and the orders went from allowing the big guns every three hours to every 6 hours. They tried transitioning to oral meds and he wasn't ready for that either. At some point today he couldn't receive anything to offset the pain because A - the orders had changed and B - the med he could receive contained the same ingredients as the oral meds so we were deadlocked. No Bueno. When he is in the most pain his respiratory stats go up significantly. When he is relaxed and not in pain the number hangs out around 15-18. During his highest pain today his respiratory numbers were in the 40s. He cried out at one point and exclaimed "by the time they get here with this damn medication my heavy duty meds will be here" His pain had hit a new threshold and it seemed there was no end in sight. Poor guy. He was right. It would be another hour and a half before the meds arrived.
By 2pm he was resting soundly. He is still on supplemental oxygen and will continue to be until he can take deeper breaths. Those deep breaths will come when his pain is under control. I left the hospital for a bit and when I returned around 3:45 his eyes were open and he was actually talking to people. That was the first I had seen of his eyes since before surgery.
Tonight he was able to tolerate jello and vanilla ice cream. He still doesn't move much, but we are seeing progress.
I've decided I need to write a medical public service announcement book. My first item of business and rule number one would be this - DO NOT march in to a room at 5:45 in the morning and yell good morning to patients and their parents. It's not good practice. I promise.
We experienced two tangible miracles today. 1 - They found a cocktail of Medicine that seems to be keeping the pain at bay. And 2 - The Ronald McDonald house!! Thank you again for your prayers. How can I ever repay you? Our Heavenly Father heard our prayers.
By 4:30 am I had finally slipped in to a deep sleep. The couch/bed here is not terrible and when I could fall asleep I did sleep quite well. At 5:45am I got a terrible wake up call. I didn't hear the door open, but I heard a very.loud GOOD MORNING! It startled me and I was ready to jump off the couch and push whoever it was out of the room. I turned over and tried to decipher who it was. She was young and was crouched on the ground looking at the drainage from Ryan's chest tube. I'm sure I sounded amazing when I asked if she was a doctor. She cheerfully told me that she was one of the residents. Ah - of course. She hadn't yet learned the proper etiquette of entering a room at 5:45AM! She wanted to listen to Ryan and then she wanted to roll him over so she could listen to his back. UH - NO! Sorry. Not sure who you are. Don't really care. And you are NOT touching him. If the doctors who come in say he can lay there because of pain, you are not moving him. So, in my not so nice/nice voice I told her that she may not touch him. Nobody had tried turning him. Nobody cared that he hadn't moved, and nobody had cared to listen to his back. She left the room and told me that she would return later with the rest of the General surgery team.
We met several doctors throughout the day. We were told that today would be the worst as far as pain went. It was hard to imagine that the pain would be harder than what he had experienced the day before. It wasn't long before I didn't have to imagine it. The decision was made to space Ryan's meds out. I don't know who had made that decision. The only group who had been to see us at that point was the General surgery team. I wrote the following update for our family and friends.
Update Day 2 - Today was a rough day for most of the day. Pain management kind of went down the tube. There was a disconnect somewhere and the orders went from allowing the big guns every three hours to every 6 hours. They tried transitioning to oral meds and he wasn't ready for that either. At some point today he couldn't receive anything to offset the pain because A - the orders had changed and B - the med he could receive contained the same ingredients as the oral meds so we were deadlocked. No Bueno. When he is in the most pain his respiratory stats go up significantly. When he is relaxed and not in pain the number hangs out around 15-18. During his highest pain today his respiratory numbers were in the 40s. He cried out at one point and exclaimed "by the time they get here with this damn medication my heavy duty meds will be here" His pain had hit a new threshold and it seemed there was no end in sight. Poor guy. He was right. It would be another hour and a half before the meds arrived.
By 2pm he was resting soundly. He is still on supplemental oxygen and will continue to be until he can take deeper breaths. Those deep breaths will come when his pain is under control. I left the hospital for a bit and when I returned around 3:45 his eyes were open and he was actually talking to people. That was the first I had seen of his eyes since before surgery.
Tonight he was able to tolerate jello and vanilla ice cream. He still doesn't move much, but we are seeing progress.
I've decided I need to write a medical public service announcement book. My first item of business and rule number one would be this - DO NOT march in to a room at 5:45 in the morning and yell good morning to patients and their parents. It's not good practice. I promise.
We experienced two tangible miracles today. 1 - They found a cocktail of Medicine that seems to be keeping the pain at bay. And 2 - The Ronald McDonald house!! Thank you again for your prayers. How can I ever repay you? Our Heavenly Father heard our prayers.
Day One - Post-Op
I was escorted to the family waiting room to wait with Brett and Sydney. The surgeon came to meet with us and told us that he expected that from start to finish - falling asleep, procedure, waking up - would be approximately 2 hours. I think it was close to an hour and half by the time he returned.
They have a 'consultation' room in the waiting area. The surgeon entered the room as well as Ryan's Bone Marrow Dr that we have seen for the past 15 years. The surgery went as planned. They were surprised at the size of the cyst. They said there were also 3 smaller cysts that they removed as well. The surgeon made a circle with his hands to show how big the cyst was and said it was about 6cm in diameter. The size would later be described as the size of a small peach/lacrosse ball, and the three smaller cysts the size of small cherries. As we were leaving our consultation we were told that it would likely be an hour and a half before Ry began to wake up enough for us to see him.
I lost track of time. Ryan was alive and peace surrounded me. I was overwhelmed by the blessings we had received. As we were waiting for them to call us back we were watching the local news. The mountain pass that we had driven just 12 hours prior was now covered with 1-2 feet of snow. Our miracles were already beginning to happen.
It was decided early on that I would be the parent to go back with Ryan. When he had his last surgery, Brett struggled and ended up passing out and ultimately throwing up a couple of times. We needed someone who could see the gore without being queasy. That person is me. I was finally taken back by a hospital volunteer to see Ryan. He asked me where we were from and I told him UT. He asked me if we were of the LDS. I told him yes. He then told me how he volunteered once a week at the Family History Center. He said that he was Presbyterian, but that the LDS allowed him to work at their center. We discussed how it was our hope that no matter what your religion or beliefs, perhaps we could all love each other. He thanked me and then left me to see my son.
Ry was pretty groggy when I first saw him, and he stayed that way for the rest of the day. I wrote the following update for our family and friends who have been following his story.
They have a 'consultation' room in the waiting area. The surgeon entered the room as well as Ryan's Bone Marrow Dr that we have seen for the past 15 years. The surgery went as planned. They were surprised at the size of the cyst. They said there were also 3 smaller cysts that they removed as well. The surgeon made a circle with his hands to show how big the cyst was and said it was about 6cm in diameter. The size would later be described as the size of a small peach/lacrosse ball, and the three smaller cysts the size of small cherries. As we were leaving our consultation we were told that it would likely be an hour and a half before Ry began to wake up enough for us to see him.
I lost track of time. Ryan was alive and peace surrounded me. I was overwhelmed by the blessings we had received. As we were waiting for them to call us back we were watching the local news. The mountain pass that we had driven just 12 hours prior was now covered with 1-2 feet of snow. Our miracles were already beginning to happen.
It was decided early on that I would be the parent to go back with Ryan. When he had his last surgery, Brett struggled and ended up passing out and ultimately throwing up a couple of times. We needed someone who could see the gore without being queasy. That person is me. I was finally taken back by a hospital volunteer to see Ryan. He asked me where we were from and I told him UT. He asked me if we were of the LDS. I told him yes. He then told me how he volunteered once a week at the Family History Center. He said that he was Presbyterian, but that the LDS allowed him to work at their center. We discussed how it was our hope that no matter what your religion or beliefs, perhaps we could all love each other. He thanked me and then left me to see my son.
Ry was pretty groggy when I first saw him, and he stayed that way for the rest of the day. I wrote the following update for our family and friends who have been following his story.
Day 1 update - Ryan has been in significant pain today. So much so that he struggles to speak. They used a special type of tubing to intubate him as they collapsed only his right lung and kept his left lung inflated. His throat is very sore and his Adams apple is visibly swollen. This is to be expected. He should feel relief from that within the next day or two. Ryan has a chest tube and it is still draining a fair amount of fluid. He has a bubbling leak in his lung that they are monitoring very closely.
Just as we were getting ready to transfer to a room Ryan's oxygen levels started to drop.
They placed a nasal cannula and began supplemental oxygen at 2 liters. They began to wean him off the oxygen just before shift change, but so far they have not been able to get him completely off of the supplement. They need him to take deep breaths, but his pain is so high that he struggles to do so. I am ok with the cannula as it is helping him relax for now.
He has been asleep since about 7:30 local time, although he has spent very little time being coherent today as they do their best to manage his pain. This afternoon he spiked a fever which is extremely rare for him but it has resolved itself as of this post.
Ry was not started on IV fluids right away, but the need for them became apparent and they began a bag of saline fluid just after 8pm.
One miracle that we witnessed today - we were sitting in the family waiting room and the local news was on. The mountain pass we drove through on the way to CA had 1-2 feet of snow. We missed the storm by 12 hours. We truly have been watched over.
I never would wish a situation on someone that would constitute the need for so many people to pray for one's self, but I would wish that everyone could feel so much love. We have felt the love of all of you. Your faith is tangible. The arms of our Heavenly Father have been wrapped around each of us and we feel it.
The staff here have been amazing. We have spent a fair amount of time in hospitals and I cannot recall another time that we have been treated so well. We waited quite some time for a room today and the staff felt so bad that we were gifted $40 for the gift shop for Syd and $20 for the cafeteria. Who does that? Another tender mercy."
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| Ryan's Chest Tube - Day One |
Day One - Surgery
After a long day of driving, and intermittent sleep, we had to be at the Ford Surgery Center at 9:15 am for check-in. Our hotel was about 12 minutes from the hospital with no traffic, and 17 minutes with traffic. Brett took Sydney down to the continental breakfast to eat while I finished getting ready. It was raining outside and I prayed that the rain was not a precursor for grim things to come. I was not looking forward to having my son put under again. Medical procedures for Ryan have gotten harder on this old mom throughout the years.
We checked in before our scheduled time and then sat and waited for the staff to call us back. Sydney wanted her hair french braided so I quickly got on that task, and I welcomed the distraction. A nurse came out and called Ryan back for vitals and weight. Brett went with him. They seemed to be gone for a while so I asked the lady at the front desk if I would get to see Ryan again before surgery, or if that was it. Just as she went to ask, Ryan and Brett walked back through the door. We sat for a few more minutes - Brett, Ryan and Sydney watched videos on their phones and I read an article on my LDS app on my phone. I needed peace.
When Ryan was called back again, I went with him this time. Brett and Sydney said their goodbyes and we went back to our corner. Ryan was given the remote and he chose a movie to watch to pass the time. He chose "Emperor's New Groove", a family favorite.
Ryan had to clean his body with antibacterial wipes. I helped him wash his arms, neck, and back, and then I was banished to outside the curtain. He's a teenager now, and mom seeing his goods is embarrassing. I understood.
Ryan was given two patches to numb his hand and his arm when they took his vitals. After he was fully dressed and ready for surgery, the nurse came in and tried to start an IV. She removed both patches and examined his hand and his arms. She struggled finding a good vein. Ryan's veins were very small. It didn't help that we had spent the entire day in the car the day before surgery not drinking enough water.
She attempted to place the IV and was unsuccessful. She called the anesthesiologist in and asked him to place the IV. They had a device that shot numbing medicine into the area where the IV was going to go as neither of the spots where the patches were placed panned out. It was less than a minute before his IV was placed. As the anesthesiologist was flushing the line Ryan said, "Thank you. I feel relaxed already." The anesthesiologist grinned and said, "I haven't given anything to you yet." Ryan replied, "Thank you placebo effect."
The entire room burst into laughter.
I signed all of the consents and it was time to say goodbye. Ryan and I both were a bit emotional. Neither of us knew if this was a final goodbye and we were both nervous at the possibility.
We checked in before our scheduled time and then sat and waited for the staff to call us back. Sydney wanted her hair french braided so I quickly got on that task, and I welcomed the distraction. A nurse came out and called Ryan back for vitals and weight. Brett went with him. They seemed to be gone for a while so I asked the lady at the front desk if I would get to see Ryan again before surgery, or if that was it. Just as she went to ask, Ryan and Brett walked back through the door. We sat for a few more minutes - Brett, Ryan and Sydney watched videos on their phones and I read an article on my LDS app on my phone. I needed peace.
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| Syd, Brett and Ryan in the first waiting room. |
When Ryan was called back again, I went with him this time. Brett and Sydney said their goodbyes and we went back to our corner. Ryan was given the remote and he chose a movie to watch to pass the time. He chose "Emperor's New Groove", a family favorite.
Ryan had to clean his body with antibacterial wipes. I helped him wash his arms, neck, and back, and then I was banished to outside the curtain. He's a teenager now, and mom seeing his goods is embarrassing. I understood.
Ryan was given two patches to numb his hand and his arm when they took his vitals. After he was fully dressed and ready for surgery, the nurse came in and tried to start an IV. She removed both patches and examined his hand and his arms. She struggled finding a good vein. Ryan's veins were very small. It didn't help that we had spent the entire day in the car the day before surgery not drinking enough water.
She attempted to place the IV and was unsuccessful. She called the anesthesiologist in and asked him to place the IV. They had a device that shot numbing medicine into the area where the IV was going to go as neither of the spots where the patches were placed panned out. It was less than a minute before his IV was placed. As the anesthesiologist was flushing the line Ryan said, "Thank you. I feel relaxed already." The anesthesiologist grinned and said, "I haven't given anything to you yet." Ryan replied, "Thank you placebo effect."
The entire room burst into laughter.
I signed all of the consents and it was time to say goodbye. Ryan and I both were a bit emotional. Neither of us knew if this was a final goodbye and we were both nervous at the possibility.
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| Headed to the OR |
Tuesday, November 03, 2015
When Prayer is All You've Got
In January we learned that Ryan had a cyst in the upper part of his right lung. The doctor in Salt Lake didn't feel like it was much to worry about and the doctors that we see in California didn't say much about it at the time. Our visit to CA in July put us on a path to making a plan to remove the cyst. Having the cyst was a risk. There were restrictions - no flying on an airplane, no shotgun shooting, no high elevations, and no high impact sports. All of those activities caused a risk of the cyst rupturing, and of Ryan's lung collapsing.
We kept Ryan from many scout activities. We said no to friendly games of soccer, and football - although we allowed those activities on occasion. Any time Ryan felt like he might have a pain in his chest, he worried that this was it. When we first learned of the cyst, it caused quite a bit of anxiety for him. He would climb in our bed and on many occasions need to be between us to relax enough to fall asleep. Those nights I would wait until he was out and I would slip out of bed and sleep in his bed. Three adult sized people don't fit well in a Queen sized bed.
Our original plan was to have the surgery during Christmas break. I didn't want him missing much school. He is taking quite a few hard classes and I hated to have him miss them. In September I received a phone call from one of our doctors. There had been a flood in Southern UT and he was calling to see if we were a part of the 'Mormon' Group that was affected by the flood. I giggled to myself and told him that we lived several hours north of the flooding and that we weren't affiliated with that group of Mormons (The FLDS clan). As we were talking he asked me if we were still planning to come to CA for the surgery and I told him yes. He mentioned that the University shuts down mid December until the end of the year and that most doctors take that time to spend with their families. I decided then that I needed to start looking at other options.
I e-mailed the surgeon and he wrote back and told me that November 2nd was the best day for surgery - an entire 6 weeks earlier than we had planned. I wrote to Brett and told him and he asked me to see if there was any chance that he could push it back to the 16th of November. He couldn't. So, it was now time to start making plans to travel to CA.
Many things had to come together to make the trip. Physicals had to be scheduled, Ry had to have an echocardiogram. Hotels had to be booked, and we were put on the list for the Ronald McDonald house.
California is a very expensive place to be. Brett and I talked a lot about doing the surgery in Salt Lake. There is a respectable surgeon there, but we feel that the post op care is better at Stanford.
The days leading up to the surgery were very hard on me. I wondered if I had done enough. Had I taught Ryan all he needed to be taught. Would this be our goodbye? Was I really ready to accept my Heavenly Father's will. Oh how I wanted to, and oh how I want to bring Ryan home. Alive. To my house.
Our bishop asked for permission for our ward to have a special fast for Ryan. Fasting is a chance for us to lay aside our physical hunger and strengthen our spiritual hunger. It is also a chance for us to ask for special blessings on behalf of people we love. We agreed that we could use those prayers. We are a fairly private family. I don't like my life being broadcast, but I felt that we needed to ask for specific prayers. I posted on our ward Facebook page and asked for specific prayers on our behalf. I did not expect to feel the love so strong. Many people around us began sending money. I had asked that we have prayers that we could get in to the Ronlald McDonald house, or that we could at least find a hotel that we can afford. We are a few days in to the trip now and while we don't have a room at the Ronald McDonald house, we have been given a substantial amount of money from people who love our family (some I didn't even know cared), and we will be ok.
Sometimes the blessings come when prayer is all you've got.
We kept Ryan from many scout activities. We said no to friendly games of soccer, and football - although we allowed those activities on occasion. Any time Ryan felt like he might have a pain in his chest, he worried that this was it. When we first learned of the cyst, it caused quite a bit of anxiety for him. He would climb in our bed and on many occasions need to be between us to relax enough to fall asleep. Those nights I would wait until he was out and I would slip out of bed and sleep in his bed. Three adult sized people don't fit well in a Queen sized bed.
Our original plan was to have the surgery during Christmas break. I didn't want him missing much school. He is taking quite a few hard classes and I hated to have him miss them. In September I received a phone call from one of our doctors. There had been a flood in Southern UT and he was calling to see if we were a part of the 'Mormon' Group that was affected by the flood. I giggled to myself and told him that we lived several hours north of the flooding and that we weren't affiliated with that group of Mormons (The FLDS clan). As we were talking he asked me if we were still planning to come to CA for the surgery and I told him yes. He mentioned that the University shuts down mid December until the end of the year and that most doctors take that time to spend with their families. I decided then that I needed to start looking at other options.
I e-mailed the surgeon and he wrote back and told me that November 2nd was the best day for surgery - an entire 6 weeks earlier than we had planned. I wrote to Brett and told him and he asked me to see if there was any chance that he could push it back to the 16th of November. He couldn't. So, it was now time to start making plans to travel to CA.
Many things had to come together to make the trip. Physicals had to be scheduled, Ry had to have an echocardiogram. Hotels had to be booked, and we were put on the list for the Ronald McDonald house.
California is a very expensive place to be. Brett and I talked a lot about doing the surgery in Salt Lake. There is a respectable surgeon there, but we feel that the post op care is better at Stanford.
The days leading up to the surgery were very hard on me. I wondered if I had done enough. Had I taught Ryan all he needed to be taught. Would this be our goodbye? Was I really ready to accept my Heavenly Father's will. Oh how I wanted to, and oh how I want to bring Ryan home. Alive. To my house.
Our bishop asked for permission for our ward to have a special fast for Ryan. Fasting is a chance for us to lay aside our physical hunger and strengthen our spiritual hunger. It is also a chance for us to ask for special blessings on behalf of people we love. We agreed that we could use those prayers. We are a fairly private family. I don't like my life being broadcast, but I felt that we needed to ask for specific prayers. I posted on our ward Facebook page and asked for specific prayers on our behalf. I did not expect to feel the love so strong. Many people around us began sending money. I had asked that we have prayers that we could get in to the Ronlald McDonald house, or that we could at least find a hotel that we can afford. We are a few days in to the trip now and while we don't have a room at the Ronald McDonald house, we have been given a substantial amount of money from people who love our family (some I didn't even know cared), and we will be ok.
Sometimes the blessings come when prayer is all you've got.
Thursday, April 23, 2015
Words of Wisdom
This week I had the opportunity to spend some time with Ryan one-on-one. I love the age he is at right now. He opens up to me and we can talk for hours. He asks thought provoking questions and has some really great insight. Sometimes my heart wants to break at the topic. Every day I ask him for his words of wisdom. A lot of time he tells me something silly, but every once in a while I get some real gems. So as to document our lives, I wanted to jot down a few things he's taught me, as well as a few things he's talked with me about recently.
Ryan had an assignment to memorize a poem for his English class. He could choose any poem he wanted to and my heart died a bit when he sent his choice to me.
Ryan had an assignment to memorize a poem for his English class. He could choose any poem he wanted to and my heart died a bit when he sent his choice to me.
In the Event of my Demise
By Tupac Shakur
In the event of my Demise
when my heart can beat no more
I Hope I Die For A Principle
or A Belief that I had Lived 4
I will die Before My Time
Because I feel the shadow's Depth
so much I wanted 2 accomplish
before I reached my Death
I have come 2 grips with the possibility
and wiped the last tear from My eyes
I Loved All who were Positive
In the event of my Demise
when my heart can beat no more
I Hope I Die For A Principle
or A Belief that I had Lived 4
I will die Before My Time
Because I feel the shadow's Depth
so much I wanted 2 accomplish
before I reached my Death
I have come 2 grips with the possibility
and wiped the last tear from My eyes
I Loved All who were Positive
In the event of my Demise
Yesterday when he got in the car he told me that they had a great discussion in English. The teacher is asking thought provoking questions and the topic yesterday was 'Doctor-assisted suicide'. As we were pulling into the driveway, his voice began to crack and he told me that a girl in his class tried to make the argument that doctor-assisted suicide was absolutely ethical. He turned to me and said "Why would someone do that? Mom, I'm faced with death and all I want to do is live!" Oh my heart!
And finally, I was pressing him about his belief in God and in Jesus Christ. I said to him "Ry, what if Jesus was just a nice guy. Maybe He just did some good things. Perhaps He wasn't who they say He was." He turned to me and said "Mom, Jesus is the only one that has been able to command His own death. People who were crucified died of dehydration. Jesus, after his mission was through, commanded that He return to His Heavenly Father. Only a God could do something like that." I sat in silence. I could not refute that. Here, my 14-year old son taught me. I love his words of wisdom.
Wednesday, April 15, 2015
A Little Bit of Syd
A few years ago Syd was invited to play on a competition league soccer team. Little did we know that invitation would shape much of what we do for the weeks, months, and now years to come. Sydney loves playing soccer. It is good for her. She feels like she is a part of something, and being active does wonders for her diabetes care. It is quite amazing how much exercise can affect your blood sugar.
Last summer we moved Syd to a new team. We have now been a part of 3 teams. Her current team is amazing. They don't win games often, but the girls on the team are friends, and there is very little drama. I have also learned to bridle my mouth. I am competitive by nature. And by competitive, I mean I have a hard time watching girls stand on the field, and I have struggled watching a team lose. I have been grateful this year that the atmosphere of our team is so different that losing has been ok. Girls aren't bad talking the other teams or even the referees. They're disappointed when they lose, but winning is not the focus. Syd is learning that there is much more to a team than winning and I'm grateful for that.
Last summer we moved Syd to a new team. We have now been a part of 3 teams. Her current team is amazing. They don't win games often, but the girls on the team are friends, and there is very little drama. I have also learned to bridle my mouth. I am competitive by nature. And by competitive, I mean I have a hard time watching girls stand on the field, and I have struggled watching a team lose. I have been grateful this year that the atmosphere of our team is so different that losing has been ok. Girls aren't bad talking the other teams or even the referees. They're disappointed when they lose, but winning is not the focus. Syd is learning that there is much more to a team than winning and I'm grateful for that.
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| Syd's first shot |
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| The ball went just past the goalie's gloves and made it in. Go Syd. |
Tuesday, April 14, 2015
When What is Seen on the Outside is not Reality
Tonight as the silence of the house surrounds me, my thoughts have drifted to Ry and the daily struggle he must feel. It's been a long time since I've updated. I didn't realize how long until I logged on to my own blog and realized that the last posts were of our London trip almost a year ago.
We've had a fairly uneventful year. Ryan's lung function has been stable. In July we took him to the Lucille Packhard Hospital at Stanford University in Palo Alto, CA. We met a new pulmonologist there. I loved her. She was very encouraging that the day would come when Ryan would be 'healed'. I use that term lightly though as I know that 'healed' does not mean better. 'Healed' means the disease will not progress. Although, at any time in his life, another virus can trigger the progression again and with this disease, progression is the enemy as it is irreversible.
Last December Ry had a scan done at the University of Utah. They injected a radioactive dye into his veins and then scanned his lungs to see the oxygen flow as well as the blood flow that goes in and out of his lungs. I was first to receive the results. I read them and of course did not understand all of the lingo, but I was somewhat surprised at some of what was said. It noted that his lungs were 50% effective.
In January I spoke with the doctor in Salt Lake over the phone and mentioned to him that I had the results of the scan and I'd love to chat with him about them. It was news to him that we even had the scan as he didn't think we had done it yet. He called me roughly a week later and told me that he wasn't surprised by the results of the VQ scan, but he was surprised at the CT scan that was done after the radioactive scan was finished. Ryan has developed a cyst in the upper right lobe of his lungs. It is the size of a ping pong ball. He sent pics to the California doctor and she said that she had never seen this before. We were once again in unchartered territory. It seems that is a common occurrence with Ry. I sent the CD to one of our doctors in CA and he had another radiologist look at it. He's convinced that the cyst was there a year ago. The doc in Salt Lake is not. So, there is some disagreement and thus Ryan has a few restrictions now until we can get doctors to agree on what to do. No contact sports. No shotgun shooting. No flying in an airplane. I have seen the images. If there truly was a cyst a year ago, it has grown exponentially. If there was not a cyst a year ago, there is one now, and what do we do about it?
We have a few options of removing the cyst. We can have him opened up again. There are risks doing that. We can have them stick a needle in it and extract it. There are risks that his lungs would collapse by doing that, and that would cause us to have to put a chest tube in. There is a risk that the cyst will rupture on its own, causing his lung to collapse. He is most concerned about that possibility.
In January I also learned that I had read his lung function results wrong for the past year and a half. There are two numbers that they look at and really care about. The first number I thought was his lung function, which has been 67% steadily. The second number is 49-50%. I never looked at the 2nd number as I believed that the 67% number was the most important and that was his lung function. I learned that I was wrong. So, his lung CAPACITY is 67%, and his lung FUNCTION is 50%. Worse than I thought for sure.
The good news though is that it hasn't gotten worse in the almost 2 years that we have been at this gig.
Ry has struggled a lot the past few months with a bout of anxiety since we found out about the cyst . On the outside he looks perfectly fine. To the world he is happy and intelligent. He starts to break down around 7pm or so. His mind cannot shut off. He is in our bed most nights late into the night because he can't shut his mind off. He is nervous, but he can't explain why. He feels most safe between the two of us in bed. I have actually let him fall asleep between us and I've gotten up and slipped into his bed or in to the guest bed so that he can feel safe and actually get some sleep. We are finding that we have to be more creative about one on one time with each other as he needs us so much at night. He doesn't freak out like one might think you would with an anxiety attack, but he goes crazy inside and it is evident.
Ryan's situation is hard to explain to people. Because he looks so healthy (which is a huge blessing), they don't understand that he is really unwell. People ask us how he is doing and it is hard to say. I don't want to say good because he is not good, but he is not bad either. He's stable. His future is unknown, and sometimes terrifying, yet he has goals and aspirations that surpass anything I could ever imagine. We have been so blessed with his life. It is just so hard when what is seen on the outside is not reality.
We've had a fairly uneventful year. Ryan's lung function has been stable. In July we took him to the Lucille Packhard Hospital at Stanford University in Palo Alto, CA. We met a new pulmonologist there. I loved her. She was very encouraging that the day would come when Ryan would be 'healed'. I use that term lightly though as I know that 'healed' does not mean better. 'Healed' means the disease will not progress. Although, at any time in his life, another virus can trigger the progression again and with this disease, progression is the enemy as it is irreversible.
Last December Ry had a scan done at the University of Utah. They injected a radioactive dye into his veins and then scanned his lungs to see the oxygen flow as well as the blood flow that goes in and out of his lungs. I was first to receive the results. I read them and of course did not understand all of the lingo, but I was somewhat surprised at some of what was said. It noted that his lungs were 50% effective.
In January I spoke with the doctor in Salt Lake over the phone and mentioned to him that I had the results of the scan and I'd love to chat with him about them. It was news to him that we even had the scan as he didn't think we had done it yet. He called me roughly a week later and told me that he wasn't surprised by the results of the VQ scan, but he was surprised at the CT scan that was done after the radioactive scan was finished. Ryan has developed a cyst in the upper right lobe of his lungs. It is the size of a ping pong ball. He sent pics to the California doctor and she said that she had never seen this before. We were once again in unchartered territory. It seems that is a common occurrence with Ry. I sent the CD to one of our doctors in CA and he had another radiologist look at it. He's convinced that the cyst was there a year ago. The doc in Salt Lake is not. So, there is some disagreement and thus Ryan has a few restrictions now until we can get doctors to agree on what to do. No contact sports. No shotgun shooting. No flying in an airplane. I have seen the images. If there truly was a cyst a year ago, it has grown exponentially. If there was not a cyst a year ago, there is one now, and what do we do about it?
We have a few options of removing the cyst. We can have him opened up again. There are risks doing that. We can have them stick a needle in it and extract it. There are risks that his lungs would collapse by doing that, and that would cause us to have to put a chest tube in. There is a risk that the cyst will rupture on its own, causing his lung to collapse. He is most concerned about that possibility.
In January I also learned that I had read his lung function results wrong for the past year and a half. There are two numbers that they look at and really care about. The first number I thought was his lung function, which has been 67% steadily. The second number is 49-50%. I never looked at the 2nd number as I believed that the 67% number was the most important and that was his lung function. I learned that I was wrong. So, his lung CAPACITY is 67%, and his lung FUNCTION is 50%. Worse than I thought for sure.
The good news though is that it hasn't gotten worse in the almost 2 years that we have been at this gig.
Ry has struggled a lot the past few months with a bout of anxiety since we found out about the cyst . On the outside he looks perfectly fine. To the world he is happy and intelligent. He starts to break down around 7pm or so. His mind cannot shut off. He is in our bed most nights late into the night because he can't shut his mind off. He is nervous, but he can't explain why. He feels most safe between the two of us in bed. I have actually let him fall asleep between us and I've gotten up and slipped into his bed or in to the guest bed so that he can feel safe and actually get some sleep. We are finding that we have to be more creative about one on one time with each other as he needs us so much at night. He doesn't freak out like one might think you would with an anxiety attack, but he goes crazy inside and it is evident.
Ryan's situation is hard to explain to people. Because he looks so healthy (which is a huge blessing), they don't understand that he is really unwell. People ask us how he is doing and it is hard to say. I don't want to say good because he is not good, but he is not bad either. He's stable. His future is unknown, and sometimes terrifying, yet he has goals and aspirations that surpass anything I could ever imagine. We have been so blessed with his life. It is just so hard when what is seen on the outside is not reality.
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