Two months ago I registered for a triathlon. When I sent my form in, I knew there was some risk with the date. Johnny’s surgery would most likely be in August sometime. What if his surgery was near the race date? What if he was still in the hospital? We learned a long time ago that predicting upcoming schedules is next to impossible. So I sent it in. I had wanted to do this race for the past couple of years and it seemed like it might work out. I decided to take the chance…..life is full of far greater risk anyway, so what if I’m out $55, it might work out.
When Johnny’s surgery was scheduled for August 19, I thought - this might work. There’s a good chance we could have him home several days before race day. We know some people who have a son that had virtually the identical surgery early in July. Their son was home in about 8 days.
After we lost Johnny, the race was the last thing on my mind. All energy, all focus, was directed toward the funeral, toward grieving, toward putting one foot in front of the other to function, caring for our daughter, and do the things that needed to be done. In some ways, this last week has felt like we were still parenting Johnny. It’s a struggle to be planning and involved in something as significant as a funeral and to be so overwhelmed with emotion and grief at the same time. But it was so important for us to honor Johnny, and to continue parenting him, right through the funeral. We were still has parents. If we were not an advocate for him, who would be? It’s always been this way, how could we stop now? Just a few more days…..then we could rest.
The funeral was such a healing time for us. Everything about it was special to us, with meaning and significance. It was a great reflection of our family and our wonderful time with Johnny. We had an army of people helping us and are again so humbled and grateful for so many stepping forward to lend a hand. Our church was phenomenal, and offered so much help and support. Different groups we are a part of separate from our church just rallied around the tasks to be done. It was an incredible outpouring that meant so much to our family. And those that attended offered heartfelt words of encouragement, comfort, and sorrow to us that mean a great deal to us right now. Our families were close by, sharing in our grief, also offering comfort and helping us. I’ll share more about the funeral on a future post.
The evening after the funeral, it occurred to me that I needed to make a decision about the race, scheduled for the next morning. In some ways, I was drawn to it. Running, especially, has been such a haven for me the past several months. Time alone, with my thoughts, with God, sorting out our struggles and fears. Everything has greater clarity after a good, long run. The simple action of moving forward as fast as you can under your own power….being in motion…it’s so therapeutic for me. I am most at home, most relaxed, when running. I do triathlons but really I’m a runner first, swimmer and biker second. So I think that’s why I was drawn to it, but at the same time, I was exhausted, had none of my gear ready, and really just didn’t have the competitive spirit for obvious reasons to be that interested. Later, it occurred to me that it might be good to just drive over and watch, maybe get my t-shirt. I don’t know, just get up early and get out of the house, away from everybody and everything, some time alone. I kind of left it that way, and set my alarm to see how things felt in the morning.
My alarm went off early, and I got up to go with the plan to just watch, maybe hang out a little, again just thinking I was getting out of the house to do something, anything, that resembled my old life, trying to separate from the events of the past week that have been nothing close to anything I ever did before we lost Johnny. I needed to be back early, anyway. We had family coming over and I wanted to see everyone. I thought of it as a test. Can I exist back in my old world, and blend in?
Right before I left the house, the thought occurred to me that maybe I could do something special as a sort of a tribute to Johnny. This particular race, for the rest of my life, will always be associated with losing Johnny, regardless of whether I was going to compete this year or not. I wanted to turn it into something meaningful. A plan began to evolve in my mind. I grabbed a few things from the basement and garage and headed down the driveway.
The morning was beautiful. Bright clear blue sky, sun shining. Maybe a little cool but the bright sun would warm things quickly. I hit the road with my gear and drove to the race staging area, only about 35 minutes from where we live. I arrived to the usual commotion of activity at the start of any race. Athletes everywhere running around nervously, getting ready for the event, unloading and setting up their gear. The race director was appealing to the competitors over the loudspeaker to see if anyone had an extra bike helmet. Apparently someone had forgotten their helmet. People were racking their bikes, pumping tires, hanging their gear, sitting and meditating. I reported to the registration area and picked up my t-shirt and race packet. Then I went to the body marking area and got marked. Number 359. Heat number 3. The kid doing the marking wished me luck. I picked up my race chip and strapped it to my ankle.
I set up some of my gear, and went through some of the usual rituals. I had some of the music from the funeral service playing on my iPod. My mind was on Johnny, on the events of the past week, on our loss, the funeral, the burial. I remembered images, thoughts, emotions. I was around hundreds of other athletes, but really insulated, moving around as if no one could see me, as I wanted to be on this morning. I didn’t talk to anyone, expect the guy doing the body markings.
At 7:15 they conducted a pre-race meeting. The usual, typical things…..stay safe, ride your bike on the right side of the road, watch a corner here or there, no biking in the transition area, swim heats will be released 3 minutes apart... I grabbed what I needed and headed down to the swim start. It was still cool, so everybody was jumping around nervously, trying to stay warm. More idle chatter among athletes. A guy a few feet away got his zipper stuck in his wet suit, and then someone helped him get it loose and zipped up.
Heat 1 went off on time. Six minutes until my heat. The Heat 1 swimmers headed out. I watched them go, arms flailing everywhere, legs kicking up white foam. It’s common to get kicked or hit during the swim leg because it’s a mass of humanity trying to swim in too small of an area with everybody zeroed in on a single buoy at the turn around point. It was a great spectacle to watch. I love swimming out in open water and do it as often as possible in the summer.
Soon, my heat was on deck. I headed down to the edge of the water. Looking out over the water, my mind was again on Johnny. On what has happened to us. The grief, the sorrow, the “Why?” question that will never be answered. Images forever burned in my mind that I will never forget. It was almost time to go....the director called for heat 3 to be on stand-by.
The race director began a countdown. “Three, Two, One…..” The start horn sounded! Our group took a running jump down the sand and into the water, down I went with them, and just as I had planned….I stopped…
The water was up just past my knees. I was about eight feet from the waters edge. I stood there, frozen, just watching the other swimmers from my heat head out into the blue water. As I watched them go, wanting to be with them, I thought of Johnny and his brief life of just over 4 months. 127 days. I thought of all our dreams for him that would not be realized. All the things we were looking forward to that would not happen. Learning to crawl, then walk. Later, it would be saying words - I wonder what his first word would have been? Then learning letters, numbers, going to school. All the books we would read together. The games we would play. The fun times with his big sister as he got older and tried to drive her crazy. Johnny’s life here on earth, over after just 4 months. My race, cut short. I stood there for a minute or so, watching the swimmers put distance between us.....until I cried. Which is just what I needed to do….and wanted to do. Tears have now become the preferred emotional attachment to Johnny. It used to be holding him close, or trying to make him smile, maybe watching him play with his favorite toy. Now it’s tears.
I eventually turned and walked back up the beach. I tore off my race chip and turned it in. They will probably record me as “DNF”, as in Did Not Finish. They asked if I was okay, I just told them that I ran into some trouble. I went back down to the beach and watched my heat come in from the water.
I originally had the thought that I would do the entire swim leg and then drop out, but sadly, I realized that doing the entire swim leg would be too much of the race and not representative of Johnny’s four months compared to a typical life time. The swim leg that ends in the transition area would be like getting to some significant place years out in a life like graduation from high school or college. As I watched the swimmers emerge from the water and run up the beach, I thought of Johnny and what he might have been like as a teenager, and then a young man. After a few more minutes, I gathered up my things, got in the car, and drove home. Going to the race, and doing what I did, was exactly what I needed to do. It felt right, and continued the healing process.
We have been told that when you lose a child, the grieving process takes a very long time, and takes on many forms. I don’t really believe we will ever be completely over this. I think this stays with you forever, but you learn to cope and get on with things, and we will, I believe that. Lea and I have talked about what we need now and we have agreed to give each other a lot of space to do what we need to do. And to say what we need to say. There is no right or wrong way to do this and we are committed to that for each other. In time, I think we will be okay. It's been a week since Johnny died. The healing continues……
Sunday, August 31, 2008
Friday, August 29, 2008
Reflections from Johnny's Parents
I shared the following thoughts at Johnny's funeral earlier today.
Lea and I decided that I (Dave) would speak for both of us today.
Tears are so good, they are so healing, and they are helping us so much right now.
Thank you all for coming today. It means a great deal to us that you would join us today to reinforce the value and significance of our son. His life may have been brief, but his influence was very significant, and we are forever changed by him - we will never forget him. Some of you may never forget him. Some of you may never forget today. And that just further validates how important he was to everyone, and especially to us.
Life with Johnny started almost exactly a year ago, when Lea told me the exciting news that she was pregnant. Many of you know that Johnny overcame great obstacles during Lea’s pregnancy. At a doctors appointment on December 21st the doctors gave him no chance to survive due to some complications that had been identified on his 20-week ultrasound two weeks earlier. It was a difficult Christmas, but many, many people prayed for us and held out hope for a miracle. And it happened. On January 3, another ultrasound revealed that the miracle we had hoped and prayed for had been granted…..Johnny’s condition had reversed. The doctors were amazed. I’ll never forget that day, they were more interested in Lea and her condition, we had to plead with the nurses to do an ultrasound so we could see our son maybe for the last time, and we saw right away that things had changed. The doctors entered the room, and confirmed what we had seen. Our baby was doing better. He might survive and go full term.
Two weeks later, on January 17, at another ultrasound appointment, he was diagnosed with a heart problem that would require a series of three surgeries after his birth. More challenges on the horizon for us and for Johnny. The roller-coaster ride continued. We tried to remain positive, kept praying for him and for us, and tried to learn about the series of surgeries he would have, that many kids come through okay and do quite well. I see Johnny’s cardiologist here today, with us for Johnny’s funeral. It’s amazing when you have one of these heart kids, I think our cardiologist knows Johnny better than anyone after Lea and I. The pediatric cardiologists, the heart surgeons, and the nurses that care for these kids are phenomenal people, and they are saving babies every day. I can’t thank them enough.
And then there was his birth on April 20. I will never forget that night and all the events surrounding his birth. We barely made it to the hospital. It was incredible. He fell into the hands of his dad and our doula, with no doctor present. My first moments with him were running down a hall with a nurse that had him wrapped in a blanket, searching frantically for a vacant room to get him stabilized. He was beautiful, but within a few hours we knew that his heart had not been healed. 11 days later, he had his first heart surgery.
Lea and I were talking before we came in today. Lea said, “You know, that birth, Johnny did that for you, because he knew you would think it was exciting.” And she’s right. I loved everything about it, being so involved, the drama. I will never forget it. Lea told me that his birth was my style, not hers, and it’s true. Thank you, Johnny. It is a beautiful memory.
Johnny recovered from that first surgery, and the homecoming was a joyous occasion. It was wonderful. We finally had our baby boy home with us. It was wonderful to settle into life at home with Johnny.
There has not been a day since that early diagnosis when Lea was pregnant when we have not wondered how long we would have Johnny with us. We often thought in terms of years. How many years? Five? Ten? When you have a baby with a challenged heart like Johnny’s, you tend to live this way at times. Although the original prognosis for his heart surgery outcomes was fairly positive, he always had us on the edge of our seats. Lea has often had thoughts that Johnathan was never really hers. To her, he has always been God’s child, more than her baby boy. She has had to hold him lightly these last four months, faced with his mortality every day. She cared for and loved him fiercely and passionately all the days he was with us. I have had to witness a mothers anguish far too many times, through his pregnancy, his first surgery…things I have witnessed have sometimes broken my heart. But each time Lea has emerged more determined to love her son as only a mother can do. I am so proud to have done this with Lea, to have shared in this journey with this woman. She is fantastic with our kids. She was with Johnny, she always will be with Juliana. I so much appreciate you, Lea. Thank you, I love you.
And now, here we are, at a place I never wanted to be at. Our little Johnny, lost last Sunday. I want you to know that Lea and I, we have complete peace that he is in a better place, in heaven, with no suffering, immeasurable joy, and a perfect heart. Our grief is for us, for Lea and I, for Juliana, for our loss, and how much we miss him. We miss him so much.
The question could be asked: why did his journey evolve this way….he made it through what many believe to be a miracle pregnancy, only to be lost to complications from heart surgery 4 months into his life. Some may even ask if the pain and difficulty we are going through now was worth it.
Our answer is an unequivocal “yes”. His four months was a great gift to us, and gave us the opportunity to know and understand him in ways we never would have been able to if he would have died in Lea’s womb. His sounds, his personality, the color of his hair, the color of his eyes, his long fingers and toes, his big feet, how he liked to be comforted and held, how he responded to his sister so beautifully……four brief months to know and love him. And in return, he provided so much to enrich our lives. He was at such a great place before this last surgery. He was smiling on a regular basis. He enjoyed playing with some of his toys. He had some great interactions with his big sister. The last couple of months were very special for us, having him home and with us, memories we will never forget.
I have no doubt that I will be a better man, a better husband, and a better father because I have been blessed to be Johnny’s dad for four months. He has given me so many gifts during our brief time together. Lea and I both believe he may have given more to us than we gave to him, even though he needed so much care like any newborn baby does.
Johnny gave me the gift of experiencing the joy and pride of being a father to a son. Those of you that know us know how much I love Juliana, but there is something different about having a son, and for four months, I experienced this. I loved it. He allowed us to experience all the awe and wonder of holding a little baby again for a second time. He gave us the gift of the simple pleasure of holding your sleeping baby in your arms while they drift off to sleep. And he brought out a personality and tenderness in our little Juliana that would not have blossomed any other way – for four months, she was a wonderful big sister. We never could have imagined how much we would have enjoyed seeing our children together. And now this is a central part of our loss. Juliana, in her own special way, grieves with us. She woke up at 5:00 am this morning, crying, sobbing. She couldn’t tell us why…we know why. Lea held her, comforted her. We are navigating this path with her, helping her grieve as she needs to, and we know we will get through this, together.
Our thoughts, perspective, and relationship with God have been amplified to degrees we never thought possible through this experience. We seem to have more questions then answers these days. We have experienced anger and frustration with God as never before, and at the same time we have experienced periods of calmness in the storm that can only be explained as God walking with us, giving us the strength to face the adversity and difficult circumstance we are in, that in the past we would have thought unbearable. Still more questions than answers right now, but we continue to ask the questions, maintaining a dialogue with God, and we believe that’s what is important. We have not abandoned God, he has not abandoned us. We continue to talk about this with Him.
Many have followed our story on our family blog. Those that know me know I would be the last person to share so much of our story in such a public format. But way back in December, between Christmas and New Years, when things looked so grim for us, I believe I had a directive of sorts from God to begin a record of our journey. I was on a long run on a cold winter day, sorting out my thoughts, grieving over what was happening to our baby, when I had a strong and clear thought about Johnny. The message was two-fold – there are many chapters left to our story, and his story needs to be told. From this, the blog began. And now that Johnny is gone, every word, every thought, is so precious to us. We are so thankful for this record of him and our family’s journey these past several months. I am so thankful for that day, that run, those thoughts, that I credit to God.
Johnny was with us here just over four months. 127 days as the candles behind me signify. He made the most of his days, and greatly enriched the lives of his mother and father, his big sister, his extended family, and many, many others. Now we’ve got to pick up the pieces, and it’s our turn to decide what we will do with the rest of our days.
Johnny, we love you so much. We will miss you so much. Thank you so much for the gifts you gave us and the lessons you taught us. You are an amazing little baby. We miss you dearly, and we will never forget you. Compared to an eternity, our lives will be as brief as yours was. We hope to see you soon.
Lea and I decided that I (Dave) would speak for both of us today.
Tears are so good, they are so healing, and they are helping us so much right now.
Thank you all for coming today. It means a great deal to us that you would join us today to reinforce the value and significance of our son. His life may have been brief, but his influence was very significant, and we are forever changed by him - we will never forget him. Some of you may never forget him. Some of you may never forget today. And that just further validates how important he was to everyone, and especially to us.
Life with Johnny started almost exactly a year ago, when Lea told me the exciting news that she was pregnant. Many of you know that Johnny overcame great obstacles during Lea’s pregnancy. At a doctors appointment on December 21st the doctors gave him no chance to survive due to some complications that had been identified on his 20-week ultrasound two weeks earlier. It was a difficult Christmas, but many, many people prayed for us and held out hope for a miracle. And it happened. On January 3, another ultrasound revealed that the miracle we had hoped and prayed for had been granted…..Johnny’s condition had reversed. The doctors were amazed. I’ll never forget that day, they were more interested in Lea and her condition, we had to plead with the nurses to do an ultrasound so we could see our son maybe for the last time, and we saw right away that things had changed. The doctors entered the room, and confirmed what we had seen. Our baby was doing better. He might survive and go full term.
Two weeks later, on January 17, at another ultrasound appointment, he was diagnosed with a heart problem that would require a series of three surgeries after his birth. More challenges on the horizon for us and for Johnny. The roller-coaster ride continued. We tried to remain positive, kept praying for him and for us, and tried to learn about the series of surgeries he would have, that many kids come through okay and do quite well. I see Johnny’s cardiologist here today, with us for Johnny’s funeral. It’s amazing when you have one of these heart kids, I think our cardiologist knows Johnny better than anyone after Lea and I. The pediatric cardiologists, the heart surgeons, and the nurses that care for these kids are phenomenal people, and they are saving babies every day. I can’t thank them enough.
And then there was his birth on April 20. I will never forget that night and all the events surrounding his birth. We barely made it to the hospital. It was incredible. He fell into the hands of his dad and our doula, with no doctor present. My first moments with him were running down a hall with a nurse that had him wrapped in a blanket, searching frantically for a vacant room to get him stabilized. He was beautiful, but within a few hours we knew that his heart had not been healed. 11 days later, he had his first heart surgery.
Lea and I were talking before we came in today. Lea said, “You know, that birth, Johnny did that for you, because he knew you would think it was exciting.” And she’s right. I loved everything about it, being so involved, the drama. I will never forget it. Lea told me that his birth was my style, not hers, and it’s true. Thank you, Johnny. It is a beautiful memory.
Johnny recovered from that first surgery, and the homecoming was a joyous occasion. It was wonderful. We finally had our baby boy home with us. It was wonderful to settle into life at home with Johnny.
There has not been a day since that early diagnosis when Lea was pregnant when we have not wondered how long we would have Johnny with us. We often thought in terms of years. How many years? Five? Ten? When you have a baby with a challenged heart like Johnny’s, you tend to live this way at times. Although the original prognosis for his heart surgery outcomes was fairly positive, he always had us on the edge of our seats. Lea has often had thoughts that Johnathan was never really hers. To her, he has always been God’s child, more than her baby boy. She has had to hold him lightly these last four months, faced with his mortality every day. She cared for and loved him fiercely and passionately all the days he was with us. I have had to witness a mothers anguish far too many times, through his pregnancy, his first surgery…things I have witnessed have sometimes broken my heart. But each time Lea has emerged more determined to love her son as only a mother can do. I am so proud to have done this with Lea, to have shared in this journey with this woman. She is fantastic with our kids. She was with Johnny, she always will be with Juliana. I so much appreciate you, Lea. Thank you, I love you.
And now, here we are, at a place I never wanted to be at. Our little Johnny, lost last Sunday. I want you to know that Lea and I, we have complete peace that he is in a better place, in heaven, with no suffering, immeasurable joy, and a perfect heart. Our grief is for us, for Lea and I, for Juliana, for our loss, and how much we miss him. We miss him so much.
The question could be asked: why did his journey evolve this way….he made it through what many believe to be a miracle pregnancy, only to be lost to complications from heart surgery 4 months into his life. Some may even ask if the pain and difficulty we are going through now was worth it.
Our answer is an unequivocal “yes”. His four months was a great gift to us, and gave us the opportunity to know and understand him in ways we never would have been able to if he would have died in Lea’s womb. His sounds, his personality, the color of his hair, the color of his eyes, his long fingers and toes, his big feet, how he liked to be comforted and held, how he responded to his sister so beautifully……four brief months to know and love him. And in return, he provided so much to enrich our lives. He was at such a great place before this last surgery. He was smiling on a regular basis. He enjoyed playing with some of his toys. He had some great interactions with his big sister. The last couple of months were very special for us, having him home and with us, memories we will never forget.
I have no doubt that I will be a better man, a better husband, and a better father because I have been blessed to be Johnny’s dad for four months. He has given me so many gifts during our brief time together. Lea and I both believe he may have given more to us than we gave to him, even though he needed so much care like any newborn baby does.
Johnny gave me the gift of experiencing the joy and pride of being a father to a son. Those of you that know us know how much I love Juliana, but there is something different about having a son, and for four months, I experienced this. I loved it. He allowed us to experience all the awe and wonder of holding a little baby again for a second time. He gave us the gift of the simple pleasure of holding your sleeping baby in your arms while they drift off to sleep. And he brought out a personality and tenderness in our little Juliana that would not have blossomed any other way – for four months, she was a wonderful big sister. We never could have imagined how much we would have enjoyed seeing our children together. And now this is a central part of our loss. Juliana, in her own special way, grieves with us. She woke up at 5:00 am this morning, crying, sobbing. She couldn’t tell us why…we know why. Lea held her, comforted her. We are navigating this path with her, helping her grieve as she needs to, and we know we will get through this, together.
Our thoughts, perspective, and relationship with God have been amplified to degrees we never thought possible through this experience. We seem to have more questions then answers these days. We have experienced anger and frustration with God as never before, and at the same time we have experienced periods of calmness in the storm that can only be explained as God walking with us, giving us the strength to face the adversity and difficult circumstance we are in, that in the past we would have thought unbearable. Still more questions than answers right now, but we continue to ask the questions, maintaining a dialogue with God, and we believe that’s what is important. We have not abandoned God, he has not abandoned us. We continue to talk about this with Him.
Many have followed our story on our family blog. Those that know me know I would be the last person to share so much of our story in such a public format. But way back in December, between Christmas and New Years, when things looked so grim for us, I believe I had a directive of sorts from God to begin a record of our journey. I was on a long run on a cold winter day, sorting out my thoughts, grieving over what was happening to our baby, when I had a strong and clear thought about Johnny. The message was two-fold – there are many chapters left to our story, and his story needs to be told. From this, the blog began. And now that Johnny is gone, every word, every thought, is so precious to us. We are so thankful for this record of him and our family’s journey these past several months. I am so thankful for that day, that run, those thoughts, that I credit to God.
Johnny was with us here just over four months. 127 days as the candles behind me signify. He made the most of his days, and greatly enriched the lives of his mother and father, his big sister, his extended family, and many, many others. Now we’ve got to pick up the pieces, and it’s our turn to decide what we will do with the rest of our days.
Johnny, we love you so much. We will miss you so much. Thank you so much for the gifts you gave us and the lessons you taught us. You are an amazing little baby. We miss you dearly, and we will never forget you. Compared to an eternity, our lives will be as brief as yours was. We hope to see you soon.
Tuesday, August 26, 2008
Arrangements for Johnny
Funeral arrangements for Johnny have been made. Here is the schedule:
Friday, August 29, 2008
10:00 am - Funeral Service
Calvary Church, Roseville
2120 Lexington Avenue North
Roseville, MN 55113
Phone: (651) 487-2855
A lunch will be served at the church after the service, beginning around 11:00 am.
12:45 pm - Interment at Roselawn Cemetery
803 West Larpenteur Avenue
Roseville, MN 55113
We have realized in the past 48 hours how deeply connected some of you are to our story and to Johnny. Many are grieving with us. We debated some about this, but concluded to have the interment open to anyone that feels they need to attend in order to continue with the healing process. There will be a very brief message and a prayer by our pastor, and then we will say goodbye one last time.
I am working on setting up a memorial fund for those interested in making a donation. There is a great camp here in Minnesota for kids with challenged hearts like Johnny had. We had hoped that one day he would get to attend this camp. This is a fantastic event for these kids, and the program is supported by fundraising and donation. Kids only pay $25 to attend. Here is a link-->>http://www.campodayin.org/
Please designate donations with "in memory of Johnathan Nyberg" on the memo line of checks. You can also donate online by credit card at the above link.
Cards and correspondence can be mailed to the following if you do not have our home address:
Alice Johnson (for Johnny's parents)
Calvary Church
2120 Lexington Avenue North
Roseville, MN 55113
Thank you for all the tremendous and continuing support coming our way.
Friday, August 29, 2008
10:00 am - Funeral Service
Calvary Church, Roseville
2120 Lexington Avenue North
Roseville, MN 55113
Phone: (651) 487-2855
A lunch will be served at the church after the service, beginning around 11:00 am.
12:45 pm - Interment at Roselawn Cemetery
803 West Larpenteur Avenue
Roseville, MN 55113
We have realized in the past 48 hours how deeply connected some of you are to our story and to Johnny. Many are grieving with us. We debated some about this, but concluded to have the interment open to anyone that feels they need to attend in order to continue with the healing process. There will be a very brief message and a prayer by our pastor, and then we will say goodbye one last time.
I am working on setting up a memorial fund for those interested in making a donation. There is a great camp here in Minnesota for kids with challenged hearts like Johnny had. We had hoped that one day he would get to attend this camp. This is a fantastic event for these kids, and the program is supported by fundraising and donation. Kids only pay $25 to attend. Here is a link-->>http://www.campodayin.org/
Please designate donations with "in memory of Johnathan Nyberg" on the memo line of checks. You can also donate online by credit card at the above link.
Cards and correspondence can be mailed to the following if you do not have our home address:
Alice Johnson (for Johnny's parents)
Calvary Church
2120 Lexington Avenue North
Roseville, MN 55113
Thank you for all the tremendous and continuing support coming our way.
Monday, August 25, 2008
Broken Hearts
The Lord is near to the brokenhearted, and saves those who are crushed in spirit.
- Psalm 34:18
Johnathan David Nyberg
The above picture was taken on August 16, 3 days before his surgery. A special thanks to Johnny's aunt, Megan Conrad, for the picture. Each picture is so precious to us now. We are getting by hour to hour and sustained by all the thoughts and prayers, encouragement, notes, and support from so many. Very difficult times for our family, sometimes the sorrow seems almost overwhelming, but we will get through this. Juliana is doing okay, and processing things right there with us, which is what she needs to be doing. I will post arrangement information here when we have plans finalized.
- Psalm 34:18
Johnathan David Nyberg"Johnny"
April 20, 2008 - August 24, 2008
The above picture was taken on August 16, 3 days before his surgery. A special thanks to Johnny's aunt, Megan Conrad, for the picture. Each picture is so precious to us now. We are getting by hour to hour and sustained by all the thoughts and prayers, encouragement, notes, and support from so many. Very difficult times for our family, sometimes the sorrow seems almost overwhelming, but we will get through this. Juliana is doing okay, and processing things right there with us, which is what she needs to be doing. I will post arrangement information here when we have plans finalized.
Sunday, August 24, 2008
Day 6
4:06 pm
Johnny's gone. We were able to hold him through his last couple of hours. Words can't describe what we are experiencing right now........please pray for us and for Juliana.
11:05 am - we are with Johnny and he is still with us. Some lab test and x-ray results came back and things are worse. We continue to hope and pray for another miracle for little Johnny. His condition remains too unstable to hold him, so we stay close by.....
8:55 am - I am sad to write things are continuing to go downhill. Some hard discussions with the doctors......they are setting us up with a private room.....we are both with Johnny and close by....we have asked to hold him......
8:28 am - the results of the echo showed that he has a potential blood flow problem that could be some clotting. They are going to treat this with an effusion into his blood to try and break down any clot that could have formed. Treating two problems - the possible clot and infection, with the hopes that treatment of both will resolve his issues and his blood pressure will stabilize at a normal level. This continues to be a critical time for Johnny, he is in a more critical situation right now then he was on Wednesday. Appreciate your prayers for us and for Johnny during this time.
7:21 am - they just gave Johnny the "last resort" drug that was discussed last Wednesday to try and get his blood pressure elevated. Several doctors consulting and gathering now. They are just finishing the echo cardiogram.
6:51 am - Had a meeting with the ICU doc, the next several hours through the morning will be a critical period for Johnny. They will be watching and waiting for his blood pressure and white blood cell count to improve. They have him on high doses of epinephrine but unlike last Wednesday, he isn't responding to this, further indication he has some kind of infection going on. His other vital signs are okay, his oxygen has come back a little. Primary issue is his blood pressure and the infection problem. The cardiologist on call also came by and expressed some concern. They are going to order an echo to rule out a heart function problem.
I'll try and update as often as I can but a lot going on here as far as consultations with his medical team. We appreciate all your thoughts and prayers, we know we are not alone in this, and know so many are praying for us and for Johnny.
6:10 am - They continue to battle the blood pressure drops. The ICU doc came by for a brief update. They think he has an infection. They are giving him antibiotics. Some lab work came back and his white blood cell count is up. The Intensivist called Johnny's surgeon on the phone, the conversation began with, "we're not doing so good over here." They will do lab work on a frequent basis to monitor progress with battling the infection to try and get things under control.
3:49 am - Lea and I were home trying to get some sleep. The phone rang at 3:49 am - the nurse was calling to update us.....Johnathan had taken a downward turn. His blood pressure was dropping again. They had to give him some transfusions of blood volume. His oxygen saturations were also falling. I'll update more when I am there.
Johnny's gone. We were able to hold him through his last couple of hours. Words can't describe what we are experiencing right now........please pray for us and for Juliana.
11:05 am - we are with Johnny and he is still with us. Some lab test and x-ray results came back and things are worse. We continue to hope and pray for another miracle for little Johnny. His condition remains too unstable to hold him, so we stay close by.....
8:55 am - I am sad to write things are continuing to go downhill. Some hard discussions with the doctors......they are setting us up with a private room.....we are both with Johnny and close by....we have asked to hold him......
8:28 am - the results of the echo showed that he has a potential blood flow problem that could be some clotting. They are going to treat this with an effusion into his blood to try and break down any clot that could have formed. Treating two problems - the possible clot and infection, with the hopes that treatment of both will resolve his issues and his blood pressure will stabilize at a normal level. This continues to be a critical time for Johnny, he is in a more critical situation right now then he was on Wednesday. Appreciate your prayers for us and for Johnny during this time.
7:21 am - they just gave Johnny the "last resort" drug that was discussed last Wednesday to try and get his blood pressure elevated. Several doctors consulting and gathering now. They are just finishing the echo cardiogram.
6:51 am - Had a meeting with the ICU doc, the next several hours through the morning will be a critical period for Johnny. They will be watching and waiting for his blood pressure and white blood cell count to improve. They have him on high doses of epinephrine but unlike last Wednesday, he isn't responding to this, further indication he has some kind of infection going on. His other vital signs are okay, his oxygen has come back a little. Primary issue is his blood pressure and the infection problem. The cardiologist on call also came by and expressed some concern. They are going to order an echo to rule out a heart function problem.
I'll try and update as often as I can but a lot going on here as far as consultations with his medical team. We appreciate all your thoughts and prayers, we know we are not alone in this, and know so many are praying for us and for Johnny.
6:10 am - They continue to battle the blood pressure drops. The ICU doc came by for a brief update. They think he has an infection. They are giving him antibiotics. Some lab work came back and his white blood cell count is up. The Intensivist called Johnny's surgeon on the phone, the conversation began with, "we're not doing so good over here." They will do lab work on a frequent basis to monitor progress with battling the infection to try and get things under control.
3:49 am - Lea and I were home trying to get some sleep. The phone rang at 3:49 am - the nurse was calling to update us.....Johnathan had taken a downward turn. His blood pressure was dropping again. They had to give him some transfusions of blood volume. His oxygen saturations were also falling. I'll update more when I am there.
Saturday, August 23, 2008
Day 5
New post "This guy we know...." is below this one.
10:00 pm - Some results came back from the chest x-ray. The right lung is about the same as this morning. According to the ICU doc, best case is that in a couple of days, the collapsed portion of the lung re-inflates on it's own as Johnny's condition improves. Worst case is there may have been some nerve damage during surgery that has resulted in a problem with the diapharm that would require a surgical repair. He didn't think this was the case, but couldn't rule it out. They are also watching closely for infection problems, but so far his white blood cell count is where it should be. So the respiratory treatments will continue on a regular basis and we will see what the next couple of days brings us. They will continue to try and reduce some of his medications and start to dial back some of his air/vent support.
8:50 pm - no results from the chest x-ray yet, things take a long time late in the day on weekends. Probably means nothing is worse if we don't have anything back yet. Johnny was showing signs of being more alert. He was trying to move his arms around a lot so we talked to the nurses about how he likes to be wrapped up to settle and sleep well. Somehow they were able to sort of swaddle him up loosely around his middle area and arms, it seems to help as he has been more peaceful this afternoon. They have been surprised at what a difference this has made to get him to relax and rest. The alternative would be increased dosages of addictive pain medications to get him to lie still.....let's see, more drugs or a nice soft blanket.....we were thankful to be able to intervene on Johnny's behalf.
We also brought Juliana by the hospital for another visit. The visit went about the same as last time for Juliana - it went well. She liked it that he still had her picture up on the wall. She patted him again and this time said, "I love you, Johnny" when I asked her if she had anything to say to him. Afterwards, all of us got something to eat for dinner, and then I dropped Lea off to stay with Johnny while I drove Jules home to go to bed. She wanted to go in with Lea to see Johnny. "I want to say good night to Johnny", she told us, sobbing. It was really too late for her to go in and see him. We talked about it on the way home, about how she misses him. Then I thought of an idea to try and talked to her about how we talk to each other on the phone when I am out of town traveling or at work, and I asked her if she wanted to tell Johnny good night over the phone. This seemed to perk her up. When we got inside I dialed up Lea down at the hospital and asked her to hold the phone up to Johnny's ear. I gave Jules the phone, and she said, "Good night, Johnny, I love you." After that, she was back to her usual self. She just needed some closure with Johnny for the day. During the bedtime routine, she said the following during prayer time: "I want Johnny to smile at me the next time we visit him. Amen."
I'll put up another update if we hear anything back on the chest x-ray, otherwise, no news is probably good news and a sign that things haven't changed significantly.
4:05 pm - they just finished taking a chest x-ray to see if there is any progress with Johnny's right lung. I'll report more after we have some results. The respiratory specialists were here this afternoon trying to get his lung in better shape.
10:15 am - The doctors came by to see Johnny. His morning chest x-ray revealed that the lower lobe of his right lung is collapsed. They are going to order the usual respiratory treatment to try and get his lung back on track. His left lung looks good. Now that his cardiac situation is more stable, the focus will be primarily on his lungs and breathing to try and get things on track to remove his vent. It will be awhile, he's still got a lot of fluid build-up in his chest and the lung collapse will set us back. The vent is pumping 100% oxygen and needs to be reduced down to around at least 50-60% O2 to slowly get him used to doing well on something closer to room air.
The lung and breathing problems need attention, but they are not as perilous as his cardiac situation a few days ago. He just needs to make steady and daily progress with his lung improvement over the next week. If you are able to keep praying for us, pray for his lungs to improve and his retained fluid to decrease. Those two things are his primary obstacles right now. Thank you.
7:29 am - Johnny had a quiet night. Nothing much new to report. We are thankful for the progress he is making. I'll update more after the doctors do their rounds.
10:00 pm - Some results came back from the chest x-ray. The right lung is about the same as this morning. According to the ICU doc, best case is that in a couple of days, the collapsed portion of the lung re-inflates on it's own as Johnny's condition improves. Worst case is there may have been some nerve damage during surgery that has resulted in a problem with the diapharm that would require a surgical repair. He didn't think this was the case, but couldn't rule it out. They are also watching closely for infection problems, but so far his white blood cell count is where it should be. So the respiratory treatments will continue on a regular basis and we will see what the next couple of days brings us. They will continue to try and reduce some of his medications and start to dial back some of his air/vent support.
8:50 pm - no results from the chest x-ray yet, things take a long time late in the day on weekends. Probably means nothing is worse if we don't have anything back yet. Johnny was showing signs of being more alert. He was trying to move his arms around a lot so we talked to the nurses about how he likes to be wrapped up to settle and sleep well. Somehow they were able to sort of swaddle him up loosely around his middle area and arms, it seems to help as he has been more peaceful this afternoon. They have been surprised at what a difference this has made to get him to relax and rest. The alternative would be increased dosages of addictive pain medications to get him to lie still.....let's see, more drugs or a nice soft blanket.....we were thankful to be able to intervene on Johnny's behalf.
We also brought Juliana by the hospital for another visit. The visit went about the same as last time for Juliana - it went well. She liked it that he still had her picture up on the wall. She patted him again and this time said, "I love you, Johnny" when I asked her if she had anything to say to him. Afterwards, all of us got something to eat for dinner, and then I dropped Lea off to stay with Johnny while I drove Jules home to go to bed. She wanted to go in with Lea to see Johnny. "I want to say good night to Johnny", she told us, sobbing. It was really too late for her to go in and see him. We talked about it on the way home, about how she misses him. Then I thought of an idea to try and talked to her about how we talk to each other on the phone when I am out of town traveling or at work, and I asked her if she wanted to tell Johnny good night over the phone. This seemed to perk her up. When we got inside I dialed up Lea down at the hospital and asked her to hold the phone up to Johnny's ear. I gave Jules the phone, and she said, "Good night, Johnny, I love you." After that, she was back to her usual self. She just needed some closure with Johnny for the day. During the bedtime routine, she said the following during prayer time: "I want Johnny to smile at me the next time we visit him. Amen."
I'll put up another update if we hear anything back on the chest x-ray, otherwise, no news is probably good news and a sign that things haven't changed significantly.
4:05 pm - they just finished taking a chest x-ray to see if there is any progress with Johnny's right lung. I'll report more after we have some results. The respiratory specialists were here this afternoon trying to get his lung in better shape.
10:15 am - The doctors came by to see Johnny. His morning chest x-ray revealed that the lower lobe of his right lung is collapsed. They are going to order the usual respiratory treatment to try and get his lung back on track. His left lung looks good. Now that his cardiac situation is more stable, the focus will be primarily on his lungs and breathing to try and get things on track to remove his vent. It will be awhile, he's still got a lot of fluid build-up in his chest and the lung collapse will set us back. The vent is pumping 100% oxygen and needs to be reduced down to around at least 50-60% O2 to slowly get him used to doing well on something closer to room air.
The lung and breathing problems need attention, but they are not as perilous as his cardiac situation a few days ago. He just needs to make steady and daily progress with his lung improvement over the next week. If you are able to keep praying for us, pray for his lungs to improve and his retained fluid to decrease. Those two things are his primary obstacles right now. Thank you.
7:29 am - Johnny had a quiet night. Nothing much new to report. We are thankful for the progress he is making. I'll update more after the doctors do their rounds.
This guy we know...
“There’s this guy we know, a good friend, he has a blog and he has written some things about our story……” That’s usually how I begin to tell someone about our friend Tom. Tom has been with us in our story about Johnathan since the beginning, before our little guy was even born.
Some background about Tom - we have known him a long time, almost as long as Lea and I have been married, and that feels like a long time. He is a very talented guy, very gifted, and does exceptional work in his profession. He’s passionate about his work, but I don’t think that’s where he finds his true purpose and meaning. I don’t think I have ever seen a WWJD bracelet on his wrist, but that’s how he tries to live, doing what Jesus would do. He spends time trying to help people on drugs get their lives right, he spends time with people that have lost everything in a hurricane, helping them try and rebuild. He sits with people that are near death, listening, being there. He seems to gravitate to the messy, emotional, and complicated things of life. And then he writes about it.
He came over to the hospital late Wednesday night when things were looking grim for Johnny. If he would have called, we would have said we didn’t want any visitors. He didn’t call, he just came over. Somehow, they let him in here or he got in here, in the ICU, even though they are not supposed to do that without our permission. The nurse at the front desk called and said we had a visitor in the ICU and I knew it was Tom. He had been following everything closely based on his notes to us and his appeal to others to pray for our situation. I probably wasn’t updating the blog frequently enough so he just came over to see first hand what was going on. Again just jumping in to a difficult and emotional situation.
Tom has this network of people he knows, organized as a sort of global, blog-based prayer chain. These people pray and things happen, Tom has written about it on his blog. I would be very careful what I ask these people to pray for and make sure it is something I desired, like making Johnny well. Tom introduced his praying friends to Johnny back in December when things looked bleak and they joined up with everybody we know, and some people we didn’t know, praying for us and for Johnny. Here we are 8 months later with a 4 month old baby that many said wouldn’t make it to his birth. Johnny’s in a tough place right now, but he is still battling on, and seems to have turned a corner today.
I give thanks to God for moving in the last couple of days to turn things around for Johnny, responding to the prayers of so many. And a huge thanks to all those who have prayed for us, Tom’s group included. Many other people besides Tom have seemed to organize a virtual army of praying people for us out there, I know Tom isn't the only link between us and a prayer group that we will never meet. In the last several days I had notes back from people and I was copied on email prayer chain notifications of numerous people that had passed our story along to others, asking for prayer. For that, we are so grateful. We didn't ask people to do that, people just did it for us. It's an amazing thing.
Here is a link to the blog:
http://xcerpts.wordpress.com/
Here is a link to the section on his blog about our story:
http://xcerpts.wordpress.com/?page_id=423&preview=true
This link will take you to his account of his visit to see Johnny:
http://xcerpts.wordpress.com/2008/08/21/johnny-laz/
Thank you, Tom, and everyone, for being a part of our journey, and for your thoughts and prayers.
Some background about Tom - we have known him a long time, almost as long as Lea and I have been married, and that feels like a long time. He is a very talented guy, very gifted, and does exceptional work in his profession. He’s passionate about his work, but I don’t think that’s where he finds his true purpose and meaning. I don’t think I have ever seen a WWJD bracelet on his wrist, but that’s how he tries to live, doing what Jesus would do. He spends time trying to help people on drugs get their lives right, he spends time with people that have lost everything in a hurricane, helping them try and rebuild. He sits with people that are near death, listening, being there. He seems to gravitate to the messy, emotional, and complicated things of life. And then he writes about it.
He came over to the hospital late Wednesday night when things were looking grim for Johnny. If he would have called, we would have said we didn’t want any visitors. He didn’t call, he just came over. Somehow, they let him in here or he got in here, in the ICU, even though they are not supposed to do that without our permission. The nurse at the front desk called and said we had a visitor in the ICU and I knew it was Tom. He had been following everything closely based on his notes to us and his appeal to others to pray for our situation. I probably wasn’t updating the blog frequently enough so he just came over to see first hand what was going on. Again just jumping in to a difficult and emotional situation.
Tom has this network of people he knows, organized as a sort of global, blog-based prayer chain. These people pray and things happen, Tom has written about it on his blog. I would be very careful what I ask these people to pray for and make sure it is something I desired, like making Johnny well. Tom introduced his praying friends to Johnny back in December when things looked bleak and they joined up with everybody we know, and some people we didn’t know, praying for us and for Johnny. Here we are 8 months later with a 4 month old baby that many said wouldn’t make it to his birth. Johnny’s in a tough place right now, but he is still battling on, and seems to have turned a corner today.
I give thanks to God for moving in the last couple of days to turn things around for Johnny, responding to the prayers of so many. And a huge thanks to all those who have prayed for us, Tom’s group included. Many other people besides Tom have seemed to organize a virtual army of praying people for us out there, I know Tom isn't the only link between us and a prayer group that we will never meet. In the last several days I had notes back from people and I was copied on email prayer chain notifications of numerous people that had passed our story along to others, asking for prayer. For that, we are so grateful. We didn't ask people to do that, people just did it for us. It's an amazing thing.
Here is a link to the blog:
http://xcerpts.wordpress.com/
Here is a link to the section on his blog about our story:
http://xcerpts.wordpress.com/?page_id=423&preview=true
This link will take you to his account of his visit to see Johnny:
http://xcerpts.wordpress.com/2008/08/21/johnny-laz/
Thank you, Tom, and everyone, for being a part of our journey, and for your thoughts and prayers.
Friday, August 22, 2008
Day 4
New post "Juliana visits Johnny in the ICU" is below this one.
11:06 pm - Last update. No significant changes. Everything steady. Hopeful for a very quiet night. Praise to God for the turn of events in the last 48 hours. We are, again, so humbled and thankful. Thanks for your prayers.
9:15 pm - About the same story from the ICU as far as Johnny's vital signs go. Everything looks steady and about the same as it has been most of the day. Another positive is they have removed the arterial line from his arm, this looks like a big IV thing strapped to his lower forearm. Another disconnection, nice to see it off of him. He is starting to look more like his normal size as his fluid retention problem subsides. Some continued concern about his oxygen saturation levels (mid 60's) but it's hard to know how much of this is related to all the congestion in his chest or something else. The hope is that this would improve as they try and clear him out before his vent tube is removed. Too soon to predict when this might be, he's got some things to work through before we can talk about a schedule for pulling out his vent.
Johnny has made some good progress today. We are very thankful to God for his healing touch on Johnny in the past couple of days and so much appreciate all of you and your words of encouragement, your thoughts and prayers for us. Thank you.
3:25 pm - Nothing much new, his docs came by, made a brief visit. Continuing to try and slowly reduce a few meds, watching vital signs which remain stable. Oxygen saturations are a little lower then the docs would like at this point but no immediate concern.
12:50 pm - Not much to report other than status quo, vital signs remain the same - everything looking good and steady, nothing exciting happening, doctors do not come by that often - we are glad to be ignored for awhile.
10:10 am - Things are progressing for Johnny. Thanks so much for your thoughts and prayers. We're beginning to think he has turned the corner we have been waiting for. He's got a long road ahead of him but we are encouraged more than we have been since he was out of surgery. His chest x-ray from this morning looked improved. He's lost a lot of the fluid retainage from the last couple of days, the output calculation showed that he was down about a pound from the past 24 hours which is great. He was all the way up to about 15 1/2 pounds for weight - when he was admitted he was about 13 1/2 pounds. This will turn into the most important thing for him.....losing all that fluid retention in his tissues, and so far he is doing a great job to try and expel things. His vital signs are good. HR is 165, BP is good, his oxygen saturations are up to the low 70% range. The surgeon came by and we are pleased to report he had his first two chest tubes removed - always a milestone to have that first "disconnection" of something. Lungs, breathing, the vent pressures, trying to clear fluid from his chest cavity - these will all become the most important things as long as his vital signs remain stable. I'll update more later but the updates may be a little less frequent because there may not be as much to report......we want a long, boring day with Johnny with small gains all along the way.
Forgot to mention on my last update, by the time Johnny had resolved his oxygen issues last night we were feeling better about things and decided to try and get some good sleep. We were both home and got some rest before heading back here this morning. Johnny did his part and kept things uneventful all night so we didn't miss much. All things considered, we are doing okay.
7:16 am - Good news, Johnny had a very boring and uneventful night. His BP remained steady. His oxygen levels climbed back slowly through the night to better levels. And his heart rate steadily dropped to a more normal range. He's now around the 160-170 bpm range which is about where he should be. The heart rate has been a major concern. He hasn't had a heart rate at this level since his surgery and everybody is relieved to see this. He's way down on his epinephrine dose (0.1) which is good because it shows he is maintaining his BP on his own. He is having good fluid output. He needs to show everybody he can maintain these good, steady vital signs through the day and into the evening and then we will all rest a little easier. The focus will continue on his lungs and breathing this morning. He continues to have some fluid build-up around his lungs and the vent pressure remains up fairly high. Now it's the long task of trying to get his fluids and weight back down to a normal level before we could consider getting him off the ventilator. I'll update more later after we meet with the doctors, but overall this is the best condition he has been in since his surgery. Thanks for all the thoughts and prayers to get us through the last few days. We would appreciate continued thoughts and prayers for our little guy as you are able.
11:06 pm - Last update. No significant changes. Everything steady. Hopeful for a very quiet night. Praise to God for the turn of events in the last 48 hours. We are, again, so humbled and thankful. Thanks for your prayers.
9:15 pm - About the same story from the ICU as far as Johnny's vital signs go. Everything looks steady and about the same as it has been most of the day. Another positive is they have removed the arterial line from his arm, this looks like a big IV thing strapped to his lower forearm. Another disconnection, nice to see it off of him. He is starting to look more like his normal size as his fluid retention problem subsides. Some continued concern about his oxygen saturation levels (mid 60's) but it's hard to know how much of this is related to all the congestion in his chest or something else. The hope is that this would improve as they try and clear him out before his vent tube is removed. Too soon to predict when this might be, he's got some things to work through before we can talk about a schedule for pulling out his vent.
Johnny has made some good progress today. We are very thankful to God for his healing touch on Johnny in the past couple of days and so much appreciate all of you and your words of encouragement, your thoughts and prayers for us. Thank you.
3:25 pm - Nothing much new, his docs came by, made a brief visit. Continuing to try and slowly reduce a few meds, watching vital signs which remain stable. Oxygen saturations are a little lower then the docs would like at this point but no immediate concern.
12:50 pm - Not much to report other than status quo, vital signs remain the same - everything looking good and steady, nothing exciting happening, doctors do not come by that often - we are glad to be ignored for awhile.
10:10 am - Things are progressing for Johnny. Thanks so much for your thoughts and prayers. We're beginning to think he has turned the corner we have been waiting for. He's got a long road ahead of him but we are encouraged more than we have been since he was out of surgery. His chest x-ray from this morning looked improved. He's lost a lot of the fluid retainage from the last couple of days, the output calculation showed that he was down about a pound from the past 24 hours which is great. He was all the way up to about 15 1/2 pounds for weight - when he was admitted he was about 13 1/2 pounds. This will turn into the most important thing for him.....losing all that fluid retention in his tissues, and so far he is doing a great job to try and expel things. His vital signs are good. HR is 165, BP is good, his oxygen saturations are up to the low 70% range. The surgeon came by and we are pleased to report he had his first two chest tubes removed - always a milestone to have that first "disconnection" of something. Lungs, breathing, the vent pressures, trying to clear fluid from his chest cavity - these will all become the most important things as long as his vital signs remain stable. I'll update more later but the updates may be a little less frequent because there may not be as much to report......we want a long, boring day with Johnny with small gains all along the way.
Forgot to mention on my last update, by the time Johnny had resolved his oxygen issues last night we were feeling better about things and decided to try and get some good sleep. We were both home and got some rest before heading back here this morning. Johnny did his part and kept things uneventful all night so we didn't miss much. All things considered, we are doing okay.
7:16 am - Good news, Johnny had a very boring and uneventful night. His BP remained steady. His oxygen levels climbed back slowly through the night to better levels. And his heart rate steadily dropped to a more normal range. He's now around the 160-170 bpm range which is about where he should be. The heart rate has been a major concern. He hasn't had a heart rate at this level since his surgery and everybody is relieved to see this. He's way down on his epinephrine dose (0.1) which is good because it shows he is maintaining his BP on his own. He is having good fluid output. He needs to show everybody he can maintain these good, steady vital signs through the day and into the evening and then we will all rest a little easier. The focus will continue on his lungs and breathing this morning. He continues to have some fluid build-up around his lungs and the vent pressure remains up fairly high. Now it's the long task of trying to get his fluids and weight back down to a normal level before we could consider getting him off the ventilator. I'll update more later after we meet with the doctors, but overall this is the best condition he has been in since his surgery. Thanks for all the thoughts and prayers to get us through the last few days. We would appreciate continued thoughts and prayers for our little guy as you are able.
Juliana visits Johnny in the ICU
Jules arrived and had a brief visit with Johnny today at about 10:45 am. I think it went as well as it could have, but as I expected it was one of the hardest things I have had to do. The “holding it together” part was not easy, but I got through it, as did Lea. We are so thankful for all the help and guidance we have received here at the hospital to help Jules navigate through this situation.
Lea brought Jules here from home. I met them in the hallway and we spent some time having some fun here before the big visit. Jules really likes the hospital, they do a great job making it kid friendly with toy animals everywhere, bright colors, play areas, and all kinds of fun things to do. I pulled her around in a wagon for awhile. She played with some of the same things that she liked when we visited Johnny back in May.
After she was comfortable with everything, we prepared her to see Johnny. I showed her a picture first of Johnny on his hospital bed and talked to her about how he would be “breathing through a straw, just like how she drinks juice.” We had suggested to her that she should bring him a picture, so she decided to bring him the finger painting she made at pre-school yesterday. Lea stayed with her while I went back to Johnny to get him ready. The nurse and I covered him with a fun and colorful kids blanket and I laid out some toys, books, and animals (Johnny’s Lion) that she had packed for him in his “hospital bag”.
I carried Jules in and she seemed fine seeing him. Kids just don’t understand the gravity of the situation, which is good, and she focused on what was familiar….her little brother – not all the monitors, tubes, equipment, etc. all over the place. She talked about his “straw” – “it’s white”, she said. I leaned her in close and she waved her little hand in front of him and said, “Hi, Johnny” in her soft voice. She touched his blanket and said, “his blanket is nice and soft.” I asked her if she wanted to say anything to Johnny. She said, “I see his little nose” while she was pointing at him. We asked her if she wanted to give him the picture she made and she held it out in front of him, even though he was asleep. I told her I was sure he liked it and asked if she wanted to hang it on the wall for him. We attached it on the wall with surgical tape, right where she told us to hang it. We talked about how he was sleeping, and that he looked comfortable. The visit was quick, probably about 5 minutes, but it was enough to accomplish what we wanted to with Juliana. She needed to see where he was and know that he was safe. I carried her the entire time. I was watching the temp monitor and Johnny was starting to get elevated temps under the blanket so we had to cut it short. We told Jules that we thought Johnny was really glad to have her visit and told her it was time to say good-bye. I leaned her in close again and she gently patted him with her little hand and then gave him a little wave in front of his face, and said, “Bye, Johnny.”
Afterwards, we spent some more time playing around the hospital again, and then it was time for Lea to bring her home. Jules didn’t want to go at first, she wanted to play some more but we told her it was time to go home and have lunch with Grandma and Grandpa and then she was on board with the plan.
Lea and Jules headed to the van to drive home, I turned and went the other way and almost immediately broke down. Randy, a good friend of ours, had arrived to visit....I walked down the hall with Randy, turned the corner, and ducked into the chapel. The tears flowed freely for awhile. I knew they would after Juliana left. Probably as much for the close call on Tuesday with Johnathan as the experience with Juliana. I cried for our family and what we are going through, for Lea seeing and experiencing things a mother should never have to go through with her baby, for Jules, for me, and of course for Johnny. I wished Randy wasn’t with me to see it, but at the same time was glad he was there. It was good to let go of some emotion...tears can be a blessing at a time like this.
There is something about having Jules go through this that is especially hard for me. Bringing her to be with Johnny is bringing her right into close quarters with all the emotions and difficulties of the situation. It has to be done so she can process things with us. Lea and I are adults, it’s really tough but we understand life can be difficult, you have to work through the hard times, lean on each other and your faith, etc. Jules is 2 ½ - I don’t want her to learn life’s hard lessons yet, at least not lessons that are this difficult. She will learn someday, she has to really, it’s all part of becoming an adult but I hope it’s gradually and gently and as she is ready. No 2 ½ year old should need to cope with having a little brother or sister in critical condition at the hospital. But it happens here everyday with many, many families. She did great with the visit, and is doing really well with the situation so far but it’s still hard. Lea told me later that on the way home, she told her, “I want to go back to the hospital and see Johnny again.” She got a little upset about it. We have reassured her there will be other visits. Even though Johnny is so little, they are really quite the pair and are so fond of each other. We really miss seeing them together.
Thanks for your prayers for Juliana. Wednesday night we couldn’t get home to have dinner and do the bedtime routine and she did great having my mom and dad do everything and then had a great night of sleep. I attribute this and the success of today’s visit to the loving hands of God being upon her and giving her comfort during this challenging time….a direct answer to people praying for her and our family. So far she is doing so much better this time around compared with Johnny’s birth and the first days of his hospital stay. This encourages us and makes the situation a little easier. Thank you.
Lea brought Jules here from home. I met them in the hallway and we spent some time having some fun here before the big visit. Jules really likes the hospital, they do a great job making it kid friendly with toy animals everywhere, bright colors, play areas, and all kinds of fun things to do. I pulled her around in a wagon for awhile. She played with some of the same things that she liked when we visited Johnny back in May.
After she was comfortable with everything, we prepared her to see Johnny. I showed her a picture first of Johnny on his hospital bed and talked to her about how he would be “breathing through a straw, just like how she drinks juice.” We had suggested to her that she should bring him a picture, so she decided to bring him the finger painting she made at pre-school yesterday. Lea stayed with her while I went back to Johnny to get him ready. The nurse and I covered him with a fun and colorful kids blanket and I laid out some toys, books, and animals (Johnny’s Lion) that she had packed for him in his “hospital bag”.
I carried Jules in and she seemed fine seeing him. Kids just don’t understand the gravity of the situation, which is good, and she focused on what was familiar….her little brother – not all the monitors, tubes, equipment, etc. all over the place. She talked about his “straw” – “it’s white”, she said. I leaned her in close and she waved her little hand in front of him and said, “Hi, Johnny” in her soft voice. She touched his blanket and said, “his blanket is nice and soft.” I asked her if she wanted to say anything to Johnny. She said, “I see his little nose” while she was pointing at him. We asked her if she wanted to give him the picture she made and she held it out in front of him, even though he was asleep. I told her I was sure he liked it and asked if she wanted to hang it on the wall for him. We attached it on the wall with surgical tape, right where she told us to hang it. We talked about how he was sleeping, and that he looked comfortable. The visit was quick, probably about 5 minutes, but it was enough to accomplish what we wanted to with Juliana. She needed to see where he was and know that he was safe. I carried her the entire time. I was watching the temp monitor and Johnny was starting to get elevated temps under the blanket so we had to cut it short. We told Jules that we thought Johnny was really glad to have her visit and told her it was time to say good-bye. I leaned her in close again and she gently patted him with her little hand and then gave him a little wave in front of his face, and said, “Bye, Johnny.”
Afterwards, we spent some more time playing around the hospital again, and then it was time for Lea to bring her home. Jules didn’t want to go at first, she wanted to play some more but we told her it was time to go home and have lunch with Grandma and Grandpa and then she was on board with the plan.
Lea and Jules headed to the van to drive home, I turned and went the other way and almost immediately broke down. Randy, a good friend of ours, had arrived to visit....I walked down the hall with Randy, turned the corner, and ducked into the chapel. The tears flowed freely for awhile. I knew they would after Juliana left. Probably as much for the close call on Tuesday with Johnathan as the experience with Juliana. I cried for our family and what we are going through, for Lea seeing and experiencing things a mother should never have to go through with her baby, for Jules, for me, and of course for Johnny. I wished Randy wasn’t with me to see it, but at the same time was glad he was there. It was good to let go of some emotion...tears can be a blessing at a time like this.
There is something about having Jules go through this that is especially hard for me. Bringing her to be with Johnny is bringing her right into close quarters with all the emotions and difficulties of the situation. It has to be done so she can process things with us. Lea and I are adults, it’s really tough but we understand life can be difficult, you have to work through the hard times, lean on each other and your faith, etc. Jules is 2 ½ - I don’t want her to learn life’s hard lessons yet, at least not lessons that are this difficult. She will learn someday, she has to really, it’s all part of becoming an adult but I hope it’s gradually and gently and as she is ready. No 2 ½ year old should need to cope with having a little brother or sister in critical condition at the hospital. But it happens here everyday with many, many families. She did great with the visit, and is doing really well with the situation so far but it’s still hard. Lea told me later that on the way home, she told her, “I want to go back to the hospital and see Johnny again.” She got a little upset about it. We have reassured her there will be other visits. Even though Johnny is so little, they are really quite the pair and are so fond of each other. We really miss seeing them together.
Thanks for your prayers for Juliana. Wednesday night we couldn’t get home to have dinner and do the bedtime routine and she did great having my mom and dad do everything and then had a great night of sleep. I attribute this and the success of today’s visit to the loving hands of God being upon her and giving her comfort during this challenging time….a direct answer to people praying for her and our family. So far she is doing so much better this time around compared with Johnny’s birth and the first days of his hospital stay. This encourages us and makes the situation a little easier. Thank you.
Thursday, August 21, 2008
Day 3
11:29 pm - they gave him the transfusion and that seems to have his oxygen levels on a slow increase upward. Other vital signs are okay, although his blood pressure increased slightly but they aren't that concerned as it could be due to the extra volume. His heart rate has also slowly decreased down to the 180 -190 range, the lowest it has been post surgery. Hopefully he is settling in for a quiet night. Just a few hours can make a big difference. 3 hours ago the doctors are all conferencing about what to do because nothing seems to be making sense. Now they have left the hospital and Johnny appears somewhat stable. Praying for a boring night. I'll update again in the morning, going to try and get some sleep.
10:47 pm - ups and downs continue in the ICU. The last hour or so Johnny's oxygen levels have come back up to at least more tolerable levels in the high 50% range....the doctors can't make any real correlation with what happened to what they were doing but at any rate they are a little more comfortable with his situation. Johnny certainly seems to have a flair for the dramatic. They delayed the transfusion to see what might happen and here comes Johnny with higher levels on his own, but the thought is to start the transfusion anyway to try and get him a little higher through the night and then work on the issue again in the morning. The good news - his surgeon and cardiologist have been here all day and into the evening and after this latest turn around they are confident enough about things that they are going home. I think some people out there were praying for him again these past couple of hours.....
9:05 pm - For the last couple of hours, Johnny's oxygen saturation levels have dropped off and remained too low creating some new concerns. Like last night with his blood pressure, the doctors are trying some different things and he doesn't seem to be responding well. This is the new and immediate serious problem. They are going to try and give him a transfusion into his blood stream to improve his oxygen levels. Just like last night the doctors are all still here, trying things without seeing the results they want, at least not yet. Pray for his oxygen saturation levels to increase to better levels without any drastic changes to his blood pressure and heart rate. Looks like we could be in for another long night with our little guy. Things were looking a little better, but now I'm sorry to report they have turned downward again. They have increased his vent air pressure to about as maximum a flow rate as they can. Johnny may need to just battle through this. I'll update again later, thanks for your thoughts and prayers, looks like Johnny continues to need all the help from above he can get.
6:15 pm - Blood pressure has remained stable now for about 8 hours....this is encouraging. The hope is he is stabilizing and can remain this way for a long period of time. A good outcome for him in the next several hours would be to make it through the night and into the morning with his BP stable and not needing a lot of medication adjustments. He continues to have good fluid output. HR remains high. They are shifting some more focus to his lungs with more frequent chest x-rays to make sure he has enough air pressure from his vent to keep his lungs inflating well. He continues to have some fluid build-up in his chest that is stressing his lungs.
2:00 pm - another brief update, the last few hours Johnny's BP has remained fairly stable so we are thankful for that. He is discharging a lot of fluid which is also positive. His HR remains fairly high near 200 bpm. They will try and reduce some of his medications through the afternoon to see if he can maintain stable BP without such high dosages. We are somewhat encouraged that things are relatively quiet for him compared to yesterday afternoon. The visit with Jules went well, I'll report more on that later.
9:50 am - just a brief update, about the same story as before, primary concerns are his BP and heart rate, they are adjusting his meds to try and get him stable, right now his BP is better. It goes up, then it goes down. They adjust as needed and in the last couple of hours he seems to be responding to the different medications. The doctors will be watching him closely today. He is a little more alert and wiggles now and then, which is beneficial to him to maintain BP but at the same time it's hard to see him move and wonder if he is moving because he feels pain or if his muscles are just moving on their own like babies do.
We are bringing Juliana in for a very brief visit. It's important that she sees where he is to have a picture of him in her mind. She has been asking and talking about him. This is a delicate issue for us; Johnny doesn't look real good right now so we will talk her through some things before we bring her in. The specialists we have talked to about this have reassured us that if we do this right, she will be okay. It's important that we hold it together when we have her in here. Pray for us if you are able about this, I'll report back how it goes. We have been working with Juliana the past week to 10 days to prepare her for Johnny's surgery, so far things are going okay. She is so precious to us, we just want to protect her little spirit but at the same time involve her as we need to so she feels like a part of our family and this difficult time we are going through. Trying to balance caring for these two kids and the significantly different places they are at right now remains one of the most difficult challenges of this.
6:20 am - Johnathan made it through the night but he developed some other concerns after about 4 am. His blood pressure started to elevate and his heart rate climbed back up over 200 again. This was a very different problem compared to the earlier episode when his BP was too low and his docs couldn't find a med to increase it. His temp increased again, and a chest x-ray revealed that he has some compromised lobes on each lung that aren't functioning. They adjusted his ventilator settings to try and inflate his lungs better with each breath. The doctors will start to round soon and will try and adjust meds, and will try and figure out how to get Johnny to respond to the new set of problems of high BP and drainage from his chest cavity. He made it through the close call of last night, now it looks like he's got some other challenges facing him early today. I'll update more when the doctors figure out a plan. Thanks for your thoughts and prayers for him.
1:05 am - Johnny may be slowly emerging from his rough stretch. Too soon to say he has turned the corner but things are a little better for him. At 12:51 his heart rate finally dropped below 200 bpm for the first time in a very long time. His BP remains acceptable with some help from his meds. The Lasix did the job for him and he had some fairly good output. His oxygen levels have dropped so they are going to give him a transfusion of blood volume to try and improve things. His cardiologist just went home. It's a good sign when your main doc feels good enough about things to go home and get some sleep. I'm also going to try and crash for a few hours. Through the rest of the night, no news is good news. I'll update again in the morning.
10:47 pm - ups and downs continue in the ICU. The last hour or so Johnny's oxygen levels have come back up to at least more tolerable levels in the high 50% range....the doctors can't make any real correlation with what happened to what they were doing but at any rate they are a little more comfortable with his situation. Johnny certainly seems to have a flair for the dramatic. They delayed the transfusion to see what might happen and here comes Johnny with higher levels on his own, but the thought is to start the transfusion anyway to try and get him a little higher through the night and then work on the issue again in the morning. The good news - his surgeon and cardiologist have been here all day and into the evening and after this latest turn around they are confident enough about things that they are going home. I think some people out there were praying for him again these past couple of hours.....
9:05 pm - For the last couple of hours, Johnny's oxygen saturation levels have dropped off and remained too low creating some new concerns. Like last night with his blood pressure, the doctors are trying some different things and he doesn't seem to be responding well. This is the new and immediate serious problem. They are going to try and give him a transfusion into his blood stream to improve his oxygen levels. Just like last night the doctors are all still here, trying things without seeing the results they want, at least not yet. Pray for his oxygen saturation levels to increase to better levels without any drastic changes to his blood pressure and heart rate. Looks like we could be in for another long night with our little guy. Things were looking a little better, but now I'm sorry to report they have turned downward again. They have increased his vent air pressure to about as maximum a flow rate as they can. Johnny may need to just battle through this. I'll update again later, thanks for your thoughts and prayers, looks like Johnny continues to need all the help from above he can get.
6:15 pm - Blood pressure has remained stable now for about 8 hours....this is encouraging. The hope is he is stabilizing and can remain this way for a long period of time. A good outcome for him in the next several hours would be to make it through the night and into the morning with his BP stable and not needing a lot of medication adjustments. He continues to have good fluid output. HR remains high. They are shifting some more focus to his lungs with more frequent chest x-rays to make sure he has enough air pressure from his vent to keep his lungs inflating well. He continues to have some fluid build-up in his chest that is stressing his lungs.
2:00 pm - another brief update, the last few hours Johnny's BP has remained fairly stable so we are thankful for that. He is discharging a lot of fluid which is also positive. His HR remains fairly high near 200 bpm. They will try and reduce some of his medications through the afternoon to see if he can maintain stable BP without such high dosages. We are somewhat encouraged that things are relatively quiet for him compared to yesterday afternoon. The visit with Jules went well, I'll report more on that later.
9:50 am - just a brief update, about the same story as before, primary concerns are his BP and heart rate, they are adjusting his meds to try and get him stable, right now his BP is better. It goes up, then it goes down. They adjust as needed and in the last couple of hours he seems to be responding to the different medications. The doctors will be watching him closely today. He is a little more alert and wiggles now and then, which is beneficial to him to maintain BP but at the same time it's hard to see him move and wonder if he is moving because he feels pain or if his muscles are just moving on their own like babies do.
We are bringing Juliana in for a very brief visit. It's important that she sees where he is to have a picture of him in her mind. She has been asking and talking about him. This is a delicate issue for us; Johnny doesn't look real good right now so we will talk her through some things before we bring her in. The specialists we have talked to about this have reassured us that if we do this right, she will be okay. It's important that we hold it together when we have her in here. Pray for us if you are able about this, I'll report back how it goes. We have been working with Juliana the past week to 10 days to prepare her for Johnny's surgery, so far things are going okay. She is so precious to us, we just want to protect her little spirit but at the same time involve her as we need to so she feels like a part of our family and this difficult time we are going through. Trying to balance caring for these two kids and the significantly different places they are at right now remains one of the most difficult challenges of this.
6:20 am - Johnathan made it through the night but he developed some other concerns after about 4 am. His blood pressure started to elevate and his heart rate climbed back up over 200 again. This was a very different problem compared to the earlier episode when his BP was too low and his docs couldn't find a med to increase it. His temp increased again, and a chest x-ray revealed that he has some compromised lobes on each lung that aren't functioning. They adjusted his ventilator settings to try and inflate his lungs better with each breath. The doctors will start to round soon and will try and adjust meds, and will try and figure out how to get Johnny to respond to the new set of problems of high BP and drainage from his chest cavity. He made it through the close call of last night, now it looks like he's got some other challenges facing him early today. I'll update more when the doctors figure out a plan. Thanks for your thoughts and prayers for him.
1:05 am - Johnny may be slowly emerging from his rough stretch. Too soon to say he has turned the corner but things are a little better for him. At 12:51 his heart rate finally dropped below 200 bpm for the first time in a very long time. His BP remains acceptable with some help from his meds. The Lasix did the job for him and he had some fairly good output. His oxygen levels have dropped so they are going to give him a transfusion of blood volume to try and improve things. His cardiologist just went home. It's a good sign when your main doc feels good enough about things to go home and get some sleep. I'm also going to try and crash for a few hours. Through the rest of the night, no news is good news. I'll update again in the morning.
Wednesday, August 20, 2008
Day 2
11:55 pm - Not much new to report, heart rate high, BP responds to epinephrine, so at least we have a way to treat his low BP when it occurs. They gave him a dose of Lasix to try and burn off some fluid so we will see what happens and hopefully no negative effect on his BP. Based on notes back to us and calls, a HUGE number of prayers going on for our little guy....thank you for your involvement in this with us. We can't tell you how much it means to us that so many take time to pray and think of us during this time.
10:00 pm - Brief update, making a little positive progress, the epinephrine has kept his blood pressure up but when they reduced the dosage his blood pressure started to come back down. The nurse just told us that she may need to up the dosage again to keep his BP at good levels. It's important that they can reduce the meds as soon as possible and that he will sustain keeping his BP at a good level. Johnny's not there yet. The surgeon came by to take a look at things. His comment was, "we are better than we were an hour ago." Looks like we can delay the "last resort" drug for at least the next few hours. Hopefully we will not need it. Heart rate remains higher than anyone wants but the BP is the important vital sign at this point. Haven't turned the corner yet. Still watching him closely. We spend time with Johnny at the side of his bed, holding his hand or touching his shoulder, praying for him and trying to do what we can do in the way of comforting him.
8:00 pm - Sorry for the delay to update, there has been a lot going on here. There has not been a time with Johnathan that seemed so perilous since way back when he was in the womb, at about 22 weeks old. See "Our Story" in the right column under the photos if you want the background. Johnny's doctors remain concerned and we are right there with them. His heart rate is elevated to 230 beats per minute now. They have his BP raised to a better level but they had to give him drugs that function like adrenaline to make it happen. He has a complex set of conditions now that contradict each other as far as treatment goes. He has too much fluid retention in his chest cavity so they need to give him diuretics to pass it through. When they do this it tends to reduce his blood volume which decreases his BP. The heart rate is a big concern....his heart can't sustain this level of work. At some point if his BP keeps dropping there will not be much else they can try. The doctors have tried several things but he isn't responding very well. His body just isn't adjusting and getting on track after the surgery as they had hoped. We've had a few somber discussions with the doctors. There is one more thing left to try if needed - a medication that they don't like to use unless they are out of all other options, and the doctors have told us we might be getting close to that point.
It's hard to see Johnny struggling like this. He doesn't look so good. We've been through so much with our little guy, and he's been through so much adversity....but it's still hard to see him like this, and his situation so serious. We are hanging in there with him, leaning on each other, offering up prayers, and trying to remain hopeful. He needs to turn a corner soon. We are watching his vital signs and looking for a positive change. We are settling in for a long night. Juliana is home with my mom and dad, and it sounds like she is doing okay but we were hopeful at least one of us could get home to have dinner with her and put her to bed. Say a prayer for little Jules too if you are praying for us. This morning when she woke up I went in to get her out of bed and the first thing she said was, "I want Johnny to come home, I miss him."
I'll update more later tonight.
3:45 pm - Johnny has had a rough afternoon. At about 1 pm his blood pressure dropped again. They moved up the chest x-ray to get a picture of what was going on inside his chest. Now his right side is showing some distress. He rebounded a little about an hour later but then went downhill with more periods of low blood pressure. There is a lot of activity and doctor consultations around his situation right now. His low blood pressure is currently his biggest problem. The chest fluid and high HR are also problems. He also developed what looks like some purple bruising on the left side of his face near where the neck line is inserted - this has his doctors concerned. They are working on him now to insert two chest tubes, one on each side to try and relieve the distress in his chest cavity. The doctors aren't sure what to make of the high heart rate and low blood pressure problem, so that is also a concern. If they know what the problem is, they can typically do something. In this case, they aren't sure, so they are trying a number of things but not sure what will work.
Of all the things he has been through since his birth, this is the worst it has been for him. The doctors are concerned. So please say a prayer for him if you are able. We are praying he will pull out of it, he needs to turn a corner sometime soon. He's been out of surgery about 24 hours now. He is 4 months old today.
11:15 am - Quick update, his BP is a little more stable, but his HR has increased again to be consistently well above 200 bpm, so they are trying to figure out a plan to bring his HR down. His surgeon ordered another chest x-ray at 3 pm to review the status of the effusion on his left side, if the same or worse, they will consider adding a chest tube to provide some drainage. They completed an Echocardiogram earlier this morning and his heart function is good with everything working as it should after his surgery, so this is positive news for him.
8:34 am - The doctors have rounded with several consultations on Johnny and his status. He made it through the night with some improvements on a few fronts, other things have developed they are working on. His BP continues to be all over the map but most of the time lower then where they want it, this morning they tried giving him some Albumen to increase his blood volume and this seemed to help increase his pressures. His fever has diminished so this is an improvement for him. His left lung showed some effusion (fluid build-up) that they are concerned about and will continue to monitor. Today will be a continuous adjustment of several things trying to get him balanced between good blood pressure and blood volume, reduced fluid build-up, and monitoring his pain medication to keep him comfortable.
10:00 pm - Brief update, making a little positive progress, the epinephrine has kept his blood pressure up but when they reduced the dosage his blood pressure started to come back down. The nurse just told us that she may need to up the dosage again to keep his BP at good levels. It's important that they can reduce the meds as soon as possible and that he will sustain keeping his BP at a good level. Johnny's not there yet. The surgeon came by to take a look at things. His comment was, "we are better than we were an hour ago." Looks like we can delay the "last resort" drug for at least the next few hours. Hopefully we will not need it. Heart rate remains higher than anyone wants but the BP is the important vital sign at this point. Haven't turned the corner yet. Still watching him closely. We spend time with Johnny at the side of his bed, holding his hand or touching his shoulder, praying for him and trying to do what we can do in the way of comforting him.
8:00 pm - Sorry for the delay to update, there has been a lot going on here. There has not been a time with Johnathan that seemed so perilous since way back when he was in the womb, at about 22 weeks old. See "Our Story" in the right column under the photos if you want the background. Johnny's doctors remain concerned and we are right there with them. His heart rate is elevated to 230 beats per minute now. They have his BP raised to a better level but they had to give him drugs that function like adrenaline to make it happen. He has a complex set of conditions now that contradict each other as far as treatment goes. He has too much fluid retention in his chest cavity so they need to give him diuretics to pass it through. When they do this it tends to reduce his blood volume which decreases his BP. The heart rate is a big concern....his heart can't sustain this level of work. At some point if his BP keeps dropping there will not be much else they can try. The doctors have tried several things but he isn't responding very well. His body just isn't adjusting and getting on track after the surgery as they had hoped. We've had a few somber discussions with the doctors. There is one more thing left to try if needed - a medication that they don't like to use unless they are out of all other options, and the doctors have told us we might be getting close to that point.
It's hard to see Johnny struggling like this. He doesn't look so good. We've been through so much with our little guy, and he's been through so much adversity....but it's still hard to see him like this, and his situation so serious. We are hanging in there with him, leaning on each other, offering up prayers, and trying to remain hopeful. He needs to turn a corner soon. We are watching his vital signs and looking for a positive change. We are settling in for a long night. Juliana is home with my mom and dad, and it sounds like she is doing okay but we were hopeful at least one of us could get home to have dinner with her and put her to bed. Say a prayer for little Jules too if you are praying for us. This morning when she woke up I went in to get her out of bed and the first thing she said was, "I want Johnny to come home, I miss him."
I'll update more later tonight.
3:45 pm - Johnny has had a rough afternoon. At about 1 pm his blood pressure dropped again. They moved up the chest x-ray to get a picture of what was going on inside his chest. Now his right side is showing some distress. He rebounded a little about an hour later but then went downhill with more periods of low blood pressure. There is a lot of activity and doctor consultations around his situation right now. His low blood pressure is currently his biggest problem. The chest fluid and high HR are also problems. He also developed what looks like some purple bruising on the left side of his face near where the neck line is inserted - this has his doctors concerned. They are working on him now to insert two chest tubes, one on each side to try and relieve the distress in his chest cavity. The doctors aren't sure what to make of the high heart rate and low blood pressure problem, so that is also a concern. If they know what the problem is, they can typically do something. In this case, they aren't sure, so they are trying a number of things but not sure what will work.
Of all the things he has been through since his birth, this is the worst it has been for him. The doctors are concerned. So please say a prayer for him if you are able. We are praying he will pull out of it, he needs to turn a corner sometime soon. He's been out of surgery about 24 hours now. He is 4 months old today.
11:15 am - Quick update, his BP is a little more stable, but his HR has increased again to be consistently well above 200 bpm, so they are trying to figure out a plan to bring his HR down. His surgeon ordered another chest x-ray at 3 pm to review the status of the effusion on his left side, if the same or worse, they will consider adding a chest tube to provide some drainage. They completed an Echocardiogram earlier this morning and his heart function is good with everything working as it should after his surgery, so this is positive news for him.
8:34 am - The doctors have rounded with several consultations on Johnny and his status. He made it through the night with some improvements on a few fronts, other things have developed they are working on. His BP continues to be all over the map but most of the time lower then where they want it, this morning they tried giving him some Albumen to increase his blood volume and this seemed to help increase his pressures. His fever has diminished so this is an improvement for him. His left lung showed some effusion (fluid build-up) that they are concerned about and will continue to monitor. Today will be a continuous adjustment of several things trying to get him balanced between good blood pressure and blood volume, reduced fluid build-up, and monitoring his pain medication to keep him comfortable.
Tuesday, August 19, 2008
Surgery
8:55 pm - Johnny has two nurses actively caring for him. Constant adjustments and fine tuning of everything. His heart rate was way up for awhile but now is back down to 210 bpm. His blood pressure goes all over so they constantly try and adjust his meds to get things stabilized. His fever is a little better since they put him on ice but he's still running hot. It will go on like this all night, adjustments to try and get him stablized with vital signs at a stable level. He's a tough little guy. They have told me more than a few times that he must be a fiesty little boy. Every now and then he wiggles a little and fights against them despite being heavily sedated. I'm glad he's got that fighter spirit, my sense is he needs that right now. Thanks so much for your thoughts and prayers for us today. Many, many notes of encouragement received today...it means a lot. This is the last post for the night. I will update more tomorrow.
4:15 pm - we are back in the ICU with Johnny. They continue to work on his meds, drainage, stabilizing his vital signs, and monitoring his pain medications. He's in rough shape but nothing that unexpected after the type of surgery he has undergone. It's tough to see him like this and it's a flashback to when he had his BT Shunt back in May. But we are thankful we can be with him now that he is back in the ICU. It almost feels like we never left here. I keep reminding myself that we did have him home for awhile and by God's grace we will get him home again. Thanks for your prayers, Johnny needs them right now.
3:20 pm - Brief update, Johnny's cardiologist came out to visit with us and let us know his status. The surgery went more or less according to plan (more details later). They will move him to recovery and call us when we can see him. As with any major surgery like this, the next 24-48 hours will be critical for Johnny. His heart beat is very high right now, 200 beats per minute. He's running a fever of 103 F. They will be working to adjust his meds to try and get him calmed down and stabilized. He's under a lot of stress right now from the surgery. I'll report back after we have had a chance to see him.
2:40 pm - just received a call from the OR, they are closing Johnathan's chest and the surgeon will be out to brief us. I'll update when I have news.
2:00 pm - nothing to report other than no news. The original indication was that the surgery could take 4 hours so it might be awhile. Our cardiologist will probably come out and give us an update sometime before the surgery is entirely complete.
12:03 pm - call from the OR - the procedure has started.
11:25 am - The typical flurry of activity right before they need to wheel him away, around 11 o'clock with nurses gathered around, doing different checks and procedures, everything getting ready. We know it's close. Then they give us the word that it's time to start saying good-bye to Johnny. He's slightly awake now, but resting. He's moving a little, his eyes are partly open like he's in a really sleepy state. It looks like he is trying to cry out a little but he can't make any noise since the ventilator is in. I have one hand on his little arm, trying to comfort him and talk to him and say a few words of encouragement. A little tear falls out of his eye and runs down the side of his face. I wipe it away, and for the thousandth time I think that this is too much for a baby to go through.......need to focus on "we're saving his life"....at times like this, I try and focus on this to emphasize the positive. It's time to wheel him down the hallway, we follow along behind him, and then at the same last turn in the hall where we have been before, they tell us it's time for a final good-bye. We each lean in close, I tell him we love him, that he's in God's hands, to hang in there, and that we'll be here when he is out. Lea leans in and does the same. We give him one last kiss on his little head. Johnny goes one way, we go the other way and back to grab our things from the ICU and then head to the chapel to offer up some prayers for our little one. He truly is in God's hands. The waiting begins.....
10:35 am - Dr. Overman (surgeon) came by to review everything and have us sign the consent form. I will never get used to signing these consent forms for surgery. They go through the list of questions and statements. One is "You understand the options and alternatives for the procedure your child is having today." This really doesn't apply to us.....there are no options. If we don't do the surgery Johnny would slowly deteriorate, become weaker, and wouldn't make it beyond a few months. So we sign. The doctors are trying to save his life, and we are on board with the plan. No real surprises during the consultation with the surgeon; it's what we have been talking about for a few months, he's having a Bi-Directional Glenn with an Atrial Septectomy.
9:10 am - we are back with Johnathan, Lea arrived. Johnny is sleeping peacefully. Just a matter of waiting now for him to be called into surgery. All lab work results came back and everything looks really good. The surgeon will come out for a visit and to review the surgery and plan with us. Our cardiologist has been by to see us a few times. More later.
7:45 am - the Intensivist doc came by to get things rolling, Johnny needed some extra attention to get his IV going. Then it was time to connect his lines and get the ventalation system going. Yesterday they had told us that the process would be a little different this time around with the docs doing all the preliminary work before they wheel him away to the OR. At about 8:00 they gave me a few minutes with him before they needed to give him a mild sedative to put him to sleep. He was lying on his bed with the IV in so I got up close to him and told him today is the big day, I told him that I loved him, that we would stay close by, that many were praying for him, and then told him to "hang tough" through this, with better days ahead. I had one hand on his head, and another on his chest. I could feel his little heart beating away. He was comfortable, but a little vocal about everything, and looking at me, with his little arms up, gently wiggling back and forth. Then the doc sent a little medication through his IV and Johnny quickly and quietly drifted off to sleep. They asked me to wait out in the lobby, we should be able to see him again in about an hour and wait with him while he sleeps before his surgery.
6:15 am - I arrived at the hospital with Johnny, Lea stayed home to get Juliana off to pre-school before she joins me later. We walked into the ICU and were greeted by familiar faces that know us and Johnny by name......not a desirable situation to be so known so well at the ICU, but at the same time it was nice to be greeted by friendly people. We settled into one of the rooms and went through the usual check-in routine. I held him most of the time and he drifted in and out of sleepiness and alertness, looking at me and looking around the room.
4:15 pm - we are back in the ICU with Johnny. They continue to work on his meds, drainage, stabilizing his vital signs, and monitoring his pain medications. He's in rough shape but nothing that unexpected after the type of surgery he has undergone. It's tough to see him like this and it's a flashback to when he had his BT Shunt back in May. But we are thankful we can be with him now that he is back in the ICU. It almost feels like we never left here. I keep reminding myself that we did have him home for awhile and by God's grace we will get him home again. Thanks for your prayers, Johnny needs them right now.
3:20 pm - Brief update, Johnny's cardiologist came out to visit with us and let us know his status. The surgery went more or less according to plan (more details later). They will move him to recovery and call us when we can see him. As with any major surgery like this, the next 24-48 hours will be critical for Johnny. His heart beat is very high right now, 200 beats per minute. He's running a fever of 103 F. They will be working to adjust his meds to try and get him calmed down and stabilized. He's under a lot of stress right now from the surgery. I'll report back after we have had a chance to see him.
2:40 pm - just received a call from the OR, they are closing Johnathan's chest and the surgeon will be out to brief us. I'll update when I have news.
2:00 pm - nothing to report other than no news. The original indication was that the surgery could take 4 hours so it might be awhile. Our cardiologist will probably come out and give us an update sometime before the surgery is entirely complete.
12:03 pm - call from the OR - the procedure has started.
11:25 am - The typical flurry of activity right before they need to wheel him away, around 11 o'clock with nurses gathered around, doing different checks and procedures, everything getting ready. We know it's close. Then they give us the word that it's time to start saying good-bye to Johnny. He's slightly awake now, but resting. He's moving a little, his eyes are partly open like he's in a really sleepy state. It looks like he is trying to cry out a little but he can't make any noise since the ventilator is in. I have one hand on his little arm, trying to comfort him and talk to him and say a few words of encouragement. A little tear falls out of his eye and runs down the side of his face. I wipe it away, and for the thousandth time I think that this is too much for a baby to go through.......need to focus on "we're saving his life"....at times like this, I try and focus on this to emphasize the positive. It's time to wheel him down the hallway, we follow along behind him, and then at the same last turn in the hall where we have been before, they tell us it's time for a final good-bye. We each lean in close, I tell him we love him, that he's in God's hands, to hang in there, and that we'll be here when he is out. Lea leans in and does the same. We give him one last kiss on his little head. Johnny goes one way, we go the other way and back to grab our things from the ICU and then head to the chapel to offer up some prayers for our little one. He truly is in God's hands. The waiting begins.....
10:35 am - Dr. Overman (surgeon) came by to review everything and have us sign the consent form. I will never get used to signing these consent forms for surgery. They go through the list of questions and statements. One is "You understand the options and alternatives for the procedure your child is having today." This really doesn't apply to us.....there are no options. If we don't do the surgery Johnny would slowly deteriorate, become weaker, and wouldn't make it beyond a few months. So we sign. The doctors are trying to save his life, and we are on board with the plan. No real surprises during the consultation with the surgeon; it's what we have been talking about for a few months, he's having a Bi-Directional Glenn with an Atrial Septectomy.
9:10 am - we are back with Johnathan, Lea arrived. Johnny is sleeping peacefully. Just a matter of waiting now for him to be called into surgery. All lab work results came back and everything looks really good. The surgeon will come out for a visit and to review the surgery and plan with us. Our cardiologist has been by to see us a few times. More later.
7:45 am - the Intensivist doc came by to get things rolling, Johnny needed some extra attention to get his IV going. Then it was time to connect his lines and get the ventalation system going. Yesterday they had told us that the process would be a little different this time around with the docs doing all the preliminary work before they wheel him away to the OR. At about 8:00 they gave me a few minutes with him before they needed to give him a mild sedative to put him to sleep. He was lying on his bed with the IV in so I got up close to him and told him today is the big day, I told him that I loved him, that we would stay close by, that many were praying for him, and then told him to "hang tough" through this, with better days ahead. I had one hand on his head, and another on his chest. I could feel his little heart beating away. He was comfortable, but a little vocal about everything, and looking at me, with his little arms up, gently wiggling back and forth. Then the doc sent a little medication through his IV and Johnny quickly and quietly drifted off to sleep. They asked me to wait out in the lobby, we should be able to see him again in about an hour and wait with him while he sleeps before his surgery.
6:15 am - I arrived at the hospital with Johnny, Lea stayed home to get Juliana off to pre-school before she joins me later. We walked into the ICU and were greeted by familiar faces that know us and Johnny by name......not a desirable situation to be so known so well at the ICU, but at the same time it was nice to be greeted by friendly people. We settled into one of the rooms and went through the usual check-in routine. I held him most of the time and he drifted in and out of sleepiness and alertness, looking at me and looking around the room.
Monday, August 18, 2008
Glenn Surgery is a "go"
We were at the hospital all afternoon today doing some prep work and appointments with Johnny. Everything is on for tomorrow. Only change is we need to have him there earlier than we expected so they can connect him to an IV and he doesn't go as long without fluids prior to the surgery. The actual surgery is scheduled for 11:30 a.m. although they may take him from us earlier to get started on some prep work with some of the lines he will need.
We met with his cardiologist (Dr. Dummer, Mpls. Children's Heart Clinic) at 1:00 pm. Some debate about whether we should admit him this afternoon (!) because of a low oxygen saturation reading (when he was all worked up and irritated - 58% - learned a long time ago not to trust these readings) - I talked her into a retest (with Johnny relaxed and sleeping while I was holding him) and she agreed...it was "winner take all", he needed to be over 65% for a period of time or else we needed to admit him - Johnny came through......68-70% - far from ideal and an indication he needs the surgery, but about where we expected him to be and enough to keep him home with us tonight. We really appreciate how our cardiologist works with us on issues like this. She was supportive of us delaying the surgery until now and really listens to what we have to say, trusting us on things where there is a grey area and middle ground that we can all live in and also showing a lot of confidence in us that we know Johnny better than anybody, better then instruments and monitors and other doctors. I don't think we could ask for a more supportive and understanding partner to work with for Johnny's care. Johnny showed his appreciation at the appointment today by sporting the new shirt below.
How are we doing? We are doing okay and feel ready to cross this important milestone with Johnny. We know it will not be easy, but we sense that God is with us and we know so many are joining with us to pray for Johnny and our family - this lifts our spirits and we can truly feel the support of everyone lifting us up hour to hour as we get closer to tomorrow. What do you do when your 4-month old baby is about ready to have major open-heart surgery? It seems the answer that keeps coming to me is, "you can't do enough...." the last few days we have tried to hold him as much as we can, spend time with him, interact with him.....just give him as much positive experience and time with us as we can. He is asleep right now and I'm tempted to go wake him up to interact with him but he needs his rest for the big day tomorrow so we let him sleep.
The last two weeks have been great with him, he's showing some good development progress and now offers little smiles to us on a daily basis, he holds his head up for brief periods, he reaches for little toys he has and watches us move around the room, keeping an eye on us. We are so thankful for what has been the "extra" two weeks we have had with him beyond when his Glenn was originally scheduled (August 6).
So much is different this time compared to our last hospital stay with Johnny - some things are easier, some things are more difficult. One positive is that we feel much better prepared with Juliana and have been working with her to prepare her sweet little spirit and heart for what is coming. We let her pack his hospital bag tonight and she had a great time loading it with toys, animals, books, and other fun things that she thought Johnny would enjoy in the hospital. Before her bedtime, I carried her into see Johnny and to say good-bye to him. I had told her that he would be gone in the morning when she wakes up. She leaned over close to him and said, "Good night and good-bye, Johnny", and then she leaned over even closer and gave him a little kiss while he slept peacefully. I told her how nice that was and she said, "I gave him a kiss because I'm going to miss him when he's in the hospital." We said good night again and I carried her out and reminded her that we would go visit Johnny real soon. We will be watching Jules closely, talking to her and listening to her. I expect she will experience emotions she doesn't fully understand the next several days so it will be important for us to help her navigate through this time. I know she is really going to miss him, they are a great pair and Johnny responds so well to her that it will also be good for him to have her visit him in the hospital. He often calms very well when she is near by and loves to watch her and listen to her voice.
No rest for little Johnny, the Number and Alphabet drills continue through the weekend from teacher Juliana.
I'll update on Tuesday as things progress along. Thanks so much for so many prayers and positive thoughts for us, we are back on the hospital path again and so thankful for all the support from so many.
We met with his cardiologist (Dr. Dummer, Mpls. Children's Heart Clinic) at 1:00 pm. Some debate about whether we should admit him this afternoon (!) because of a low oxygen saturation reading (when he was all worked up and irritated - 58% - learned a long time ago not to trust these readings) - I talked her into a retest (with Johnny relaxed and sleeping while I was holding him) and she agreed...it was "winner take all", he needed to be over 65% for a period of time or else we needed to admit him - Johnny came through......68-70% - far from ideal and an indication he needs the surgery, but about where we expected him to be and enough to keep him home with us tonight. We really appreciate how our cardiologist works with us on issues like this. She was supportive of us delaying the surgery until now and really listens to what we have to say, trusting us on things where there is a grey area and middle ground that we can all live in and also showing a lot of confidence in us that we know Johnny better than anybody, better then instruments and monitors and other doctors. I don't think we could ask for a more supportive and understanding partner to work with for Johnny's care. Johnny showed his appreciation at the appointment today by sporting the new shirt below.
How are we doing? We are doing okay and feel ready to cross this important milestone with Johnny. We know it will not be easy, but we sense that God is with us and we know so many are joining with us to pray for Johnny and our family - this lifts our spirits and we can truly feel the support of everyone lifting us up hour to hour as we get closer to tomorrow. What do you do when your 4-month old baby is about ready to have major open-heart surgery? It seems the answer that keeps coming to me is, "you can't do enough...." the last few days we have tried to hold him as much as we can, spend time with him, interact with him.....just give him as much positive experience and time with us as we can. He is asleep right now and I'm tempted to go wake him up to interact with him but he needs his rest for the big day tomorrow so we let him sleep.The last two weeks have been great with him, he's showing some good development progress and now offers little smiles to us on a daily basis, he holds his head up for brief periods, he reaches for little toys he has and watches us move around the room, keeping an eye on us. We are so thankful for what has been the "extra" two weeks we have had with him beyond when his Glenn was originally scheduled (August 6).
So much is different this time compared to our last hospital stay with Johnny - some things are easier, some things are more difficult. One positive is that we feel much better prepared with Juliana and have been working with her to prepare her sweet little spirit and heart for what is coming. We let her pack his hospital bag tonight and she had a great time loading it with toys, animals, books, and other fun things that she thought Johnny would enjoy in the hospital. Before her bedtime, I carried her into see Johnny and to say good-bye to him. I had told her that he would be gone in the morning when she wakes up. She leaned over close to him and said, "Good night and good-bye, Johnny", and then she leaned over even closer and gave him a little kiss while he slept peacefully. I told her how nice that was and she said, "I gave him a kiss because I'm going to miss him when he's in the hospital." We said good night again and I carried her out and reminded her that we would go visit Johnny real soon. We will be watching Jules closely, talking to her and listening to her. I expect she will experience emotions she doesn't fully understand the next several days so it will be important for us to help her navigate through this time. I know she is really going to miss him, they are a great pair and Johnny responds so well to her that it will also be good for him to have her visit him in the hospital. He often calms very well when she is near by and loves to watch her and listen to her voice.
No rest for little Johnny, the Number and Alphabet drills continue through the weekend from teacher Juliana.
I'll update on Tuesday as things progress along. Thanks so much for so many prayers and positive thoughts for us, we are back on the hospital path again and so thankful for all the support from so many.
Monday, August 4, 2008
Surgery Rescheduled
I'm thankful to report that after some consultations with the doctors, Johnny's surgery has been delayed a couple of weeks. His pre-op physical is now scheduled for August 18th, with the bi-directional Glenn (more info on Glenn Surgery HERE) scheduled for Tuesday, August 19th, one day short of 4 months old. We are comfortable with the plan....it would be nice to wait a little longer and I think he could make it another week or so before out-growing his shunt but there are scheduling conflicts the following week (one surgeon is out, all surgery is with two surgeons, one as a back-up) and my sense is that waiting until early September might be a little too long given his current growth rate.
Scheduling these surgeries is a tricky matter....nothing is ideal, the ideal would be that he didn't need surgery, but we know he does and it's the path we need to be on to sustain his life. The next best plan for us seems to be to have him doing fairly well up until his surgery so we walk in and have the surgery, keeping him home with us as long as possible and enjoying our time with him before what might be an extended hospital stay. I have often thought that it would be difficult to see him struggle towards the end and get admitted to the hospital and hooked up to oxygen those last several days prior to surgery, and then just be in a waiting mode....hopefully we have the optimal date set for Johnny. We are really going to make it a point to enjoy the next couple of weeks with him.
By Sunday he was more or less recovered from the cath, and he had a pretty good day. He was up with us off and on during the day, his energy level was close to back to normal, at least normal for him, and we had some nice time with him. We have learned not to take days with Johnny for granted, especially now with his next surgery looming before us. As it has always been, even back before he was born and he was in the womb, when the doctors didn't think he would make it, every day with Johnny is a blessing for us and our family, and we are thankful for that. Thankful for the little things...holding him, seeing Jules and Johnny together, rocking Johnny to sleep, watching his little facial expressions change. We will make the most of the next two weeks. Thanks for all the thoughts and prayers over the past week.....many said they were praying specifically that the surgery could be delayed. God answered that one as a "yes" and we are thankful for that.
Here are some pictures......Juliana is certainly doing her part to keep Johnny entertained....our dynamic duo together again....
My caption for Johnny on the next picture is, "Hey, is this better than the hospital....? Well, I guess so." He seems to have learned to keep those arms up like a champion boxer when his sister is around to fend off too much affection.
And finally, Mom and Johnny....he loves his mama.
Friday, August 1, 2008
Cath Procedure
9:20 am, August 2
Shortly after the last update, the day shift nurse arrived and came in for a visit. She said that the night nurse had updated her on the situation. "Sounds like you are about ready to grab your baby and run out of here", she said, laughing. I told her I was okay, just ready to go. Asked about the cardiologist, she said she heard he got called over to St. Paul on an emergency in the NICU, then she told me she would try and track him down and see what could be done to expedite things.
About 45 minutes later, she came back and said, "I tracked down the doctor and talked to him on the phone, I told him 'I've got a dad over here that is about ready to bolt out of here, I don't think he's going to wait until you get here.'" She was laughing about it because I think she made it sound like I was an "irate parent", which I totally wasn't at the time - it was pretty funny. Maybe she thought I would become one if we didn't get out of here soon. Anyway, she told me he took time-out to review the x-ray on the computer network, asked some questions, she gave us a great report that all was under control, and he said he didn't need to see me. The nurse said she had some last paperwork to do and disconnect Johnny from everything and then we could go. The nurses on 3rd floor are about as fine a group of caregivers as you can find anywhere, from what I have observed. They are just great.
I started loading up the car and we worked on Johnny to get him ready - he's now back asleep, ready for our departure, in his infant seat. It's 9:20 am and we are ready to go! This is the last post until we are home.
Here we go, up and over the fence! RUN JOHNNY, RUN !!! It's great to be out!!
7:45 am, August 2
Still here.....but hopefully not for long. Johnny had a pretty good night once we finally got moved to our new permanent room on 3rd floor at about 12:30 am. He slept most of the night except for the occasional wake-up for a diaper or something. Tried to keep things as close to how it is at home as possible and he seemed to respond well to that. His nurse was great.....we had a few good laughs over why we were here and how it didn't seem like we needed to be. After completing all the admin paperwork and registration info (another reason to avoid an overnight stay!) I finally hit the sack about 2:30 am. No need for an alarm clock, the x-ray machine rolled in at about 7 am and had everybody up. Now just waiting for the on-call cardiologist to come by some I can plead my case again. Johnny is sleeping in.
11:15 pm
Don't think they are going to let me and Johnny out of here tonight. Johnny is doing fine, and I finally got him to sleep after all the events of the evening. He created some excitement around 10:00 pm, they moved us from the ICU to the short stay rooms. There didn't seem to be a lot of staff around so there was a delay getting his food going....nothing happening. He pretty much lost it and was kicking his legs so much in protest I think the oxygen meter got loose on one of his toes....his oxygen levels dropped down to 50-60% for a few minutes and created some panic among the nurses. I was not concerned, I have seen him when this occasionally happens and it didn't happen this time, something was wrong with the meter. They called the doc and he ordered us up to 3rd floor for the night, in the mean time everybody finally cleared out of here after they adjusted his oxygen sensor on his toe and I wrapped him up as close as I could to how we do it at home, got the food going on my own since nobody else was doing it, and rocked him to sleep in his bed......resulting in oxygen levels at 70% on room air (I turned off the supplemental oxygen myself). Then I went to the front desk nursing station to plead my case for release or delay of the move to 3rd floor....I found no sympathy, only concern that "3rd floor has more experience with heart kids" - something I am already aware of having spent a month there in May.
So here we are....I guess we will have to make the most of our little slumber party.
9:00 pm
Met with the doctor to review the results of the cath procedure. Pleased to report everything went very well. He was able to obtain a lot of good data, photographs, and information that will help with the Glenn surgery. Pressures and measurements were within normal ranges, for the most part. There was not a significant pressure difference across Johnny's atrial septum which reduces the likelihood that he would need his Glenn surgery immediately. There will be more consultation on this on Monday when his medical team is back in the office and his surgeon and cardiologist can review all the information. Too soon to know what the outcome will be but it is encouraging we may be able to delay the Glenn for a few weeks.
Johnny is in the PICU now and is alert and looking around. He's a little irritated about the lack of food situation but otherwise is doing fine. Around 10 pm they will allow him some food. His oxygen levels are a little low (60-65% saturation) so we will be watching this closely in the next few hours. This is probably the indicator that will determine if we can make our escape tonight or if we will need to wait until tomorrow. Kind of a homecoming of sorts in the ICU - a few familiar faces have stopped by to say hello. Ironically, they have us in the same bed and room that he was in back on April 26th when we arrived here for the first time.
More later.....
8:05 pm
Another call from the OR, they are done with the procedure and are moving Johnny to recovery. His doctor will meet with me and review how things went when he is able to do so.
7:30 pm
Just received a call from the OR, everything is going according to plan, they were able to take some good photographs of Johnny's shunt and some shots of the interior of his heart. They have completed some diagnostic pressure tests across different areas of his heart. Johnny is doing great and is comfortable, all vital signs stable. More diagnostic work to complete, possibly another 30-45 minutes before they finish and withdraw the catheter and move Johnny to recovery.
6:30 pm
Johnny and I arrived at the hospital at about 3pm. So different from last time, when everything was so strange and unfamiliar. Now it's a familiar place. Not exactly glad to be here, but it's certainly different this time. Within a few minutes of our arrival they told us everything was running late. 4:30 procedure had been pushed to at least 5:00 pm, maybe later. The delay isn't really that big of a deal, the big deal is that Johnny isn't getting any nutrition...per doctor's orders prior to surgery. I am thinking that my comforting skills will be put to the test. That's okay, it's been a long time since Johnny and I had a "boys night out" just the two of us. Sounds like they will want us to stay overnight but if there is any way I can escape with him, even at 2 or 3 am, we are out of here and heading home.
He was alert for awhile, everything was okay, I entertained him with some of the toys Lea packed, then at about 3:30 he fell asleep peacefully in my lap and had a nice nap until about 4:15. Then he was up awhile again, kind of fussy but we walked around the now all too familiar pre-surgery staging area. He really did great, considering. At about 5pm, they were saying it would be closer to 6pm so we kept each other company until about 5:30. I look forward to the day when he can play cards or something so we have additional options to pass the time. By 5:45 the visits by the various docs started to occur and we knew it wouldn't be long. 6pm they came to get Johnny - I handed him over with the usual hugs, kisses, and pats and again had that strange and empty feeling one can only have when handing your child over to the doctors to be put under anesthesia for a medical procedure.
Should be about 2-3 hours before I get a report about how everything went and what was learned. We may not know a final decision on the Glenn until Monday when all the docs, his surgeon, and cardiologist review the results and make a decision about surgery next week or later. I'll post more here when I have an update from the cath.
Thanks for all the notes of encouragement and prayers for Johnny and our family. They really mean a great deal to us as we head into this next chapter of Johnny's life.
Shortly after the last update, the day shift nurse arrived and came in for a visit. She said that the night nurse had updated her on the situation. "Sounds like you are about ready to grab your baby and run out of here", she said, laughing. I told her I was okay, just ready to go. Asked about the cardiologist, she said she heard he got called over to St. Paul on an emergency in the NICU, then she told me she would try and track him down and see what could be done to expedite things.
About 45 minutes later, she came back and said, "I tracked down the doctor and talked to him on the phone, I told him 'I've got a dad over here that is about ready to bolt out of here, I don't think he's going to wait until you get here.'" She was laughing about it because I think she made it sound like I was an "irate parent", which I totally wasn't at the time - it was pretty funny. Maybe she thought I would become one if we didn't get out of here soon. Anyway, she told me he took time-out to review the x-ray on the computer network, asked some questions, she gave us a great report that all was under control, and he said he didn't need to see me. The nurse said she had some last paperwork to do and disconnect Johnny from everything and then we could go. The nurses on 3rd floor are about as fine a group of caregivers as you can find anywhere, from what I have observed. They are just great.
I started loading up the car and we worked on Johnny to get him ready - he's now back asleep, ready for our departure, in his infant seat. It's 9:20 am and we are ready to go! This is the last post until we are home.
Here we go, up and over the fence! RUN JOHNNY, RUN !!! It's great to be out!!
7:45 am, August 2
Still here.....but hopefully not for long. Johnny had a pretty good night once we finally got moved to our new permanent room on 3rd floor at about 12:30 am. He slept most of the night except for the occasional wake-up for a diaper or something. Tried to keep things as close to how it is at home as possible and he seemed to respond well to that. His nurse was great.....we had a few good laughs over why we were here and how it didn't seem like we needed to be. After completing all the admin paperwork and registration info (another reason to avoid an overnight stay!) I finally hit the sack about 2:30 am. No need for an alarm clock, the x-ray machine rolled in at about 7 am and had everybody up. Now just waiting for the on-call cardiologist to come by some I can plead my case again. Johnny is sleeping in.
11:15 pm
Don't think they are going to let me and Johnny out of here tonight. Johnny is doing fine, and I finally got him to sleep after all the events of the evening. He created some excitement around 10:00 pm, they moved us from the ICU to the short stay rooms. There didn't seem to be a lot of staff around so there was a delay getting his food going....nothing happening. He pretty much lost it and was kicking his legs so much in protest I think the oxygen meter got loose on one of his toes....his oxygen levels dropped down to 50-60% for a few minutes and created some panic among the nurses. I was not concerned, I have seen him when this occasionally happens and it didn't happen this time, something was wrong with the meter. They called the doc and he ordered us up to 3rd floor for the night, in the mean time everybody finally cleared out of here after they adjusted his oxygen sensor on his toe and I wrapped him up as close as I could to how we do it at home, got the food going on my own since nobody else was doing it, and rocked him to sleep in his bed......resulting in oxygen levels at 70% on room air (I turned off the supplemental oxygen myself). Then I went to the front desk nursing station to plead my case for release or delay of the move to 3rd floor....I found no sympathy, only concern that "3rd floor has more experience with heart kids" - something I am already aware of having spent a month there in May.
So here we are....I guess we will have to make the most of our little slumber party.
9:00 pm
Met with the doctor to review the results of the cath procedure. Pleased to report everything went very well. He was able to obtain a lot of good data, photographs, and information that will help with the Glenn surgery. Pressures and measurements were within normal ranges, for the most part. There was not a significant pressure difference across Johnny's atrial septum which reduces the likelihood that he would need his Glenn surgery immediately. There will be more consultation on this on Monday when his medical team is back in the office and his surgeon and cardiologist can review all the information. Too soon to know what the outcome will be but it is encouraging we may be able to delay the Glenn for a few weeks.
Johnny is in the PICU now and is alert and looking around. He's a little irritated about the lack of food situation but otherwise is doing fine. Around 10 pm they will allow him some food. His oxygen levels are a little low (60-65% saturation) so we will be watching this closely in the next few hours. This is probably the indicator that will determine if we can make our escape tonight or if we will need to wait until tomorrow. Kind of a homecoming of sorts in the ICU - a few familiar faces have stopped by to say hello. Ironically, they have us in the same bed and room that he was in back on April 26th when we arrived here for the first time.
More later.....
8:05 pm
Another call from the OR, they are done with the procedure and are moving Johnny to recovery. His doctor will meet with me and review how things went when he is able to do so.
7:30 pm
Just received a call from the OR, everything is going according to plan, they were able to take some good photographs of Johnny's shunt and some shots of the interior of his heart. They have completed some diagnostic pressure tests across different areas of his heart. Johnny is doing great and is comfortable, all vital signs stable. More diagnostic work to complete, possibly another 30-45 minutes before they finish and withdraw the catheter and move Johnny to recovery.
6:30 pm
Johnny and I arrived at the hospital at about 3pm. So different from last time, when everything was so strange and unfamiliar. Now it's a familiar place. Not exactly glad to be here, but it's certainly different this time. Within a few minutes of our arrival they told us everything was running late. 4:30 procedure had been pushed to at least 5:00 pm, maybe later. The delay isn't really that big of a deal, the big deal is that Johnny isn't getting any nutrition...per doctor's orders prior to surgery. I am thinking that my comforting skills will be put to the test. That's okay, it's been a long time since Johnny and I had a "boys night out" just the two of us. Sounds like they will want us to stay overnight but if there is any way I can escape with him, even at 2 or 3 am, we are out of here and heading home.
He was alert for awhile, everything was okay, I entertained him with some of the toys Lea packed, then at about 3:30 he fell asleep peacefully in my lap and had a nice nap until about 4:15. Then he was up awhile again, kind of fussy but we walked around the now all too familiar pre-surgery staging area. He really did great, considering. At about 5pm, they were saying it would be closer to 6pm so we kept each other company until about 5:30. I look forward to the day when he can play cards or something so we have additional options to pass the time. By 5:45 the visits by the various docs started to occur and we knew it wouldn't be long. 6pm they came to get Johnny - I handed him over with the usual hugs, kisses, and pats and again had that strange and empty feeling one can only have when handing your child over to the doctors to be put under anesthesia for a medical procedure.
Should be about 2-3 hours before I get a report about how everything went and what was learned. We may not know a final decision on the Glenn until Monday when all the docs, his surgeon, and cardiologist review the results and make a decision about surgery next week or later. I'll post more here when I have an update from the cath.
Thanks for all the notes of encouragement and prayers for Johnny and our family. They really mean a great deal to us as we head into this next chapter of Johnny's life.
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