It is February 14, 2009 - 249 days post-transplant. At 2:36 am, baby R passed away and went to be with Jesus.
Around 9:45 pm on February 13, we received a phone call from the Med Center that R was not doing well. After dropping off two of the three kids and heading to the hospital, we received another call that he was rapidly deteriorating and they were doing all that they could. We informed them that we were only a few minutes away.
We were informed when we arrived that staff were quickly getting to a point where there was not much more they could do for them. Machines were providing maximal support. His vascular system needed fluid, and as much as they put in would quickly leave the vascular system and make its way to his tissues. More fluid was needed to maintain pressure for his heart, however, as more fluid went in, his lungs were not able to rid the body of the carbon dioxide and he was becoming acidic. If the trend continued, his heart would eventually wear out.
Over the next few hours, blood gases continued to decline. We made the decision at 1:10 am to take Hannah to Grandma's and let her sleep. We made it back to the hospital about 2:05 am. We heard that things continued to worsen and within minutes of our return, R became very unstable. His heart rate and blood pressure began to fall. Soon, he had no heart rate. Staff made every effort to revive him for 30 minutes, but there was no response. He was gone.
A few final comments...
- We cannot say enough about the fine people at UNMC. It was a privilege to get to know them and work with them. They are simply amazing.
- Please keep the biological parents in your prayers. They are also dealing with this difficult loss and, more importantly, they need a very real encounter with Jesus.
- Lastly, thank you so much for taking this journey with us. We do not consider ourselves to be alone, but rather a part of a much bigger team. We consider you a part of this calling to "father the fatherless" and care for those that need to be loved. You are a blessing to us.
God bless you!
Saturday, February 14, 2009
Saturday, January 31, 2009
Day 235
A quick update...
R has made good progress over the past week. We remain optimistic about his outcome, but understand that he still has a long way to go and could, at any time, take a bad turn.
In the past week, the medicine they have been given for the pulmonary hypertension seems to be working. They have taken him off of the nitric oxide machine. His blood gases have been good over the past week and they hope to move him from the high frequency ventilator to the conventional ventilator tomorrow. Over the past week, they have been able to take off most of the fluid that had been put in a week ago this past Thursday night.
All in all, he is doing well and we are very grateful. He has a long way to go. He must get off of the ventilator, off of dialysis, off of sedation and paralytic meds and much more. Thank you for praying.
R has made good progress over the past week. We remain optimistic about his outcome, but understand that he still has a long way to go and could, at any time, take a bad turn.
In the past week, the medicine they have been given for the pulmonary hypertension seems to be working. They have taken him off of the nitric oxide machine. His blood gases have been good over the past week and they hope to move him from the high frequency ventilator to the conventional ventilator tomorrow. Over the past week, they have been able to take off most of the fluid that had been put in a week ago this past Thursday night.
All in all, he is doing well and we are very grateful. He has a long way to go. He must get off of the ventilator, off of dialysis, off of sedation and paralytic meds and much more. Thank you for praying.
Saturday, January 24, 2009
Day 228
I see it's been 49 days since the last post. Not too bad!
By means of an update, R had surgery on December 5 to (basically) take everything that was sticking out of his abdomen, put it together and put it back in. We knew it would be a difficult recovery and that there was no timeline for the healing process. We also understand from transplant patients that more often than not, the problems encountered during the healing process do not have as much to do with the transplanted organs as much as it might have to do with the heart, lungs and/or other areas.
In the 47 days following surgery, R would have good days and bad days, but for the most part, he was making slow progress and getting better. This past Thursday evening, he had a very bad night. I called for an update on R around 4:45 pm. All seemed to be well. They were removing a chest tube and planned an x-ray to make sure all was well. I intended to call back before the shift change at 7 pm to find out if all went well. At 6 pm, while we were having dinner, we received a call from the hospital indicating R was not doing well, that they were working on him and we needed to come to the hospital as soon as we could. The nurse did not elaborate. We did not ask questions. It is never good news when they call.
We arrived at the hospital around 6:30 pm to find a number of people working on him. We looked at him and could not believe what he looked like. He was extremely swollen from all of the fluids and a blue/purplish color. He looked terrible. We were told that around 5:30 pm, his blood pressure began to fall and attempts to bring it up were not working. After his blood pressure fell, his heart rate soon began to fall and his oxygen saturation level (sats) also fell. At one point, he had no blood pressure and compressions were needed to revive him. Over the next 2+ hours, they were bagging him to help him breathe. That was not working. They put him on a ventilator. That did not help. They brought in a nitrous oxide machine and that eventually helped keep his pressures and sats up at decent levels. During this time, hospital staff pulled us aside and told us to prepare for the worst - that we would be able to take as much time with him as we needed if he were not to pull through. Over the course of the next few hours, his vital signs climbed to decent levels, but still were unstable. We were told that he was on as much medical support (meds and machinery) to keep him alive as the hospital could possibly give. The rest would be up to R. Truth be told, he was in God's hands all this time.
We left the hospital close to midnight Thursday night as R had settled into a relatively stable pattern (pattern meaning he was exchanging oxygen and carbon dioxide in his lungs at a decent level and his vitals: bp, hr and sats were leveling out). We left understanding the goal for the evening was to keep his heart beating and his lungs working. About 4:55 am Friday morning, the nurse called and gave us an update. She indicated that over the past few hours, R had been trending in the wrong direction. Because of all the fluid that had been used to resuscitate him, it was beginning to compromise his breathing. If the trend continued, he would not last long. We got up and made it to the hospital at 6 am. We saw the transplant surgeon in the hallway on the way in and he was nice to come and talk with us about R's condition. During rounds that morning, the doctors informed us that he needed dialysis to get some fluid off. The challenge was that the dialysis sometimes compromised his blood pressure and, being maxed out on the bp drugs, there was no room for them to help if he went into distress.
The dialysis started around 11 am, with several people in the room watching his status, Jen & I included. Over the course of the next few hours, there were some real positive signs that R was tolerating the dialysis well and his blood pressure was stable, sometimes even increasing. Over the last 24 hours, he has come off of all of the three (maxed out) meds that were keeping his pressure up. The settings on the ventilator are not maxed out as they had been. His color is turning back to pink, indicating decent blood flow and they are pulling some of the fluid off. His breathing is much better. While his condition is improved, he is not yet out of the woods. Staff continue to watch him very closely. We are hoping for continued very slow progress.
I cannot end this message without some mention of the staff at the hospital. Simply amazing. It is a tribute to our Creator to see people that would work so hard to save a life. It has been a blessing to see them in action and get to know them. Our prayer is hat we would be a testimony to them.
Finally, thank you for praying. I have been thinking a good deal this week about a song that says "the Lord gives and takes away". Regardless of whether he gives or takes, "blessed be the name of the Lord".
By means of an update, R had surgery on December 5 to (basically) take everything that was sticking out of his abdomen, put it together and put it back in. We knew it would be a difficult recovery and that there was no timeline for the healing process. We also understand from transplant patients that more often than not, the problems encountered during the healing process do not have as much to do with the transplanted organs as much as it might have to do with the heart, lungs and/or other areas.
In the 47 days following surgery, R would have good days and bad days, but for the most part, he was making slow progress and getting better. This past Thursday evening, he had a very bad night. I called for an update on R around 4:45 pm. All seemed to be well. They were removing a chest tube and planned an x-ray to make sure all was well. I intended to call back before the shift change at 7 pm to find out if all went well. At 6 pm, while we were having dinner, we received a call from the hospital indicating R was not doing well, that they were working on him and we needed to come to the hospital as soon as we could. The nurse did not elaborate. We did not ask questions. It is never good news when they call.
We arrived at the hospital around 6:30 pm to find a number of people working on him. We looked at him and could not believe what he looked like. He was extremely swollen from all of the fluids and a blue/purplish color. He looked terrible. We were told that around 5:30 pm, his blood pressure began to fall and attempts to bring it up were not working. After his blood pressure fell, his heart rate soon began to fall and his oxygen saturation level (sats) also fell. At one point, he had no blood pressure and compressions were needed to revive him. Over the next 2+ hours, they were bagging him to help him breathe. That was not working. They put him on a ventilator. That did not help. They brought in a nitrous oxide machine and that eventually helped keep his pressures and sats up at decent levels. During this time, hospital staff pulled us aside and told us to prepare for the worst - that we would be able to take as much time with him as we needed if he were not to pull through. Over the course of the next few hours, his vital signs climbed to decent levels, but still were unstable. We were told that he was on as much medical support (meds and machinery) to keep him alive as the hospital could possibly give. The rest would be up to R. Truth be told, he was in God's hands all this time.
We left the hospital close to midnight Thursday night as R had settled into a relatively stable pattern (pattern meaning he was exchanging oxygen and carbon dioxide in his lungs at a decent level and his vitals: bp, hr and sats were leveling out). We left understanding the goal for the evening was to keep his heart beating and his lungs working. About 4:55 am Friday morning, the nurse called and gave us an update. She indicated that over the past few hours, R had been trending in the wrong direction. Because of all the fluid that had been used to resuscitate him, it was beginning to compromise his breathing. If the trend continued, he would not last long. We got up and made it to the hospital at 6 am. We saw the transplant surgeon in the hallway on the way in and he was nice to come and talk with us about R's condition. During rounds that morning, the doctors informed us that he needed dialysis to get some fluid off. The challenge was that the dialysis sometimes compromised his blood pressure and, being maxed out on the bp drugs, there was no room for them to help if he went into distress.
The dialysis started around 11 am, with several people in the room watching his status, Jen & I included. Over the course of the next few hours, there were some real positive signs that R was tolerating the dialysis well and his blood pressure was stable, sometimes even increasing. Over the last 24 hours, he has come off of all of the three (maxed out) meds that were keeping his pressure up. The settings on the ventilator are not maxed out as they had been. His color is turning back to pink, indicating decent blood flow and they are pulling some of the fluid off. His breathing is much better. While his condition is improved, he is not yet out of the woods. Staff continue to watch him very closely. We are hoping for continued very slow progress.
I cannot end this message without some mention of the staff at the hospital. Simply amazing. It is a tribute to our Creator to see people that would work so hard to save a life. It has been a blessing to see them in action and get to know them. Our prayer is hat we would be a testimony to them.
Finally, thank you for praying. I have been thinking a good deal this week about a song that says "the Lord gives and takes away". Regardless of whether he gives or takes, "blessed be the name of the Lord".
Saturday, December 6, 2008
Day 179
It is Saturday evening. From our last post, we knew that surgery was coming for R. We learned on Wednesday that his surgery would take place on Friday (December 5). With that coming as quickly as it did, we asked the surgeon if we could take R home with us for about 24 hours or so, thinking it would be nice for him to spend some time out of the hospital. We, of course, wanted to spend some time with him. The hospital agreed and it was a wonderful time we had with him.
Surgery was scheduled for Friday morning. It took about 4 hours to complete. The plan was to fix the problem area - his fistula where most of his stool came out. They also planned to fix the area around his gj tube site and relocate his stoma. In short, there were three open wounds they would work on.
At the conclusion of the surgery, the surgeon came out and explained that everything had gone very well. She managed to fix the problem areas and, to our surprise, completed his take down. This means that rather than relocate his stoma, she connected it and put it back into his body. This is normally done about one year after transplant, but the surgeon felt he was ready to have it done now. The great news is he will no longer need a surgery in June for his take down. It's been completed!
As of Saturday evening, R remains in the PICU. We expect him to be there for some time. He will need several weeks to heal. If you recall, he had some significant challenges coming out of previous surgeries. We pray all goes well and the doctors and nurses will be an extension of God's healing touch to him. In addition, R has about a 5 inch incision running vertically on his abdominal area as well as another approximate 5 inch incision running horizontally. It is quite a site.
R has a big battle ahead of him. We will do our part and walk along side as he fights. Thank you for joining with us and praying.
Surgery was scheduled for Friday morning. It took about 4 hours to complete. The plan was to fix the problem area - his fistula where most of his stool came out. They also planned to fix the area around his gj tube site and relocate his stoma. In short, there were three open wounds they would work on.
At the conclusion of the surgery, the surgeon came out and explained that everything had gone very well. She managed to fix the problem areas and, to our surprise, completed his take down. This means that rather than relocate his stoma, she connected it and put it back into his body. This is normally done about one year after transplant, but the surgeon felt he was ready to have it done now. The great news is he will no longer need a surgery in June for his take down. It's been completed!
As of Saturday evening, R remains in the PICU. We expect him to be there for some time. He will need several weeks to heal. If you recall, he had some significant challenges coming out of previous surgeries. We pray all goes well and the doctors and nurses will be an extension of God's healing touch to him. In addition, R has about a 5 inch incision running vertically on his abdominal area as well as another approximate 5 inch incision running horizontally. It is quite a site.
R has a big battle ahead of him. We will do our part and walk along side as he fights. Thank you for joining with us and praying.
Monday, December 1, 2008
Day 174 - Surgery Scheduled
It has been an eventful month.
R has been in the hospital three times since the first time we took him home. During the times we've had him home, he's been a joy to have as a part of our family. It has been challenging, very challenging at times. It has been a joy to see him be more active, laugh and engage our kids. The reason he has had to go back in is because of his skin. As his stool comes out, it is sitting on his skin, causing it to break down to the point where an appliance/bag cannot sit on it to collect it.
Currently, he sits in the hospital awaiting surgery. The doctor told us when they discharged R for the first time that he would have to come back in for surgery. Because of all that he had went through, they had hoped to do it in the spring - giving him time to recover from being in the hospital for so long and more time to get stronger. Because his skin continues to break down to the point where he has to stay in the hospital, they decided today that they will schedule the surgery as soon as possible.
There is some significant risk to this surgery. The concern is for how he will do during the recovery. We can only pray. Our hope is for a successful surgery and a quick recovery. After that, we would be able to take him home until his next (and hopeful last) surgery - his take down next June.
Surgery is tentatively scheduled for next Monday. Doctors hope to be able to get him in this week. We are praying for a successful surgery and that his recovery goes as smoothly as possible. While we are disappointed we do not get to have him home during the holiday season, we recognize the need for his surgery and look forward to having him home as soon as possible.
Thank you for praying with us. We will update you when we know more about his surgery.
R has been in the hospital three times since the first time we took him home. During the times we've had him home, he's been a joy to have as a part of our family. It has been challenging, very challenging at times. It has been a joy to see him be more active, laugh and engage our kids. The reason he has had to go back in is because of his skin. As his stool comes out, it is sitting on his skin, causing it to break down to the point where an appliance/bag cannot sit on it to collect it.
Currently, he sits in the hospital awaiting surgery. The doctor told us when they discharged R for the first time that he would have to come back in for surgery. Because of all that he had went through, they had hoped to do it in the spring - giving him time to recover from being in the hospital for so long and more time to get stronger. Because his skin continues to break down to the point where he has to stay in the hospital, they decided today that they will schedule the surgery as soon as possible.
There is some significant risk to this surgery. The concern is for how he will do during the recovery. We can only pray. Our hope is for a successful surgery and a quick recovery. After that, we would be able to take him home until his next (and hopeful last) surgery - his take down next June.
Surgery is tentatively scheduled for next Monday. Doctors hope to be able to get him in this week. We are praying for a successful surgery and that his recovery goes as smoothly as possible. While we are disappointed we do not get to have him home during the holiday season, we recognize the need for his surgery and look forward to having him home as soon as possible.
Thank you for praying with us. We will update you when we know more about his surgery.
Friday, October 31, 2008
Day 143 - Home At Last
As the date for R's discharge was getting closer, there was the stark realization that our work truly was only beginning. And last night, begin it did...
We learned early in the day on Thursday that we would be taking him home. We were excited. He looked good and we felt ready. There seemed to be a flurry of activity and people around us during the day, all indicating how much support we would have in taking him home. It was a great feeling knowing that all these people were behind us. We felt up to the task and R was ready to go.
We got home Thursday night and began preparing all of his medicines and putting away supplies. He fell asleep about 8 pm Thursday night and we finished getting the house in order. Jen slept in a bed upstairs in R's bedroom. As it was a family affair, the girls slept on the floor in R's bedroom (as a show of solidarity I suppose) and Nathan slept in bed next to me. Most certainly, I got the short end of the stick.
I had a baby monitor next to my ear. Do you know that feeling the first night you take a baby home? With every noise, my eyes popped open. Was that him? Did he pull his tube out? Is he leaking stool all over the crib? I set my alarm at 3:55 am to get up and put more formula in his feeds. I saw a note from Jen that she filled it at 3:30 am. I went to bed thinking I may get a full night's sleep on the first night, but not so fast. Jen came down at 4 am and asked me to relieve her. He had been up for 2 hours. I jumped to the occasion, ready to go. 4 am turned to 4:30, then to 5 am, 5:30 am, 6 am. Are you kidding me? He seemed to be tiring. Perhaps it was the 5 am addition of whatever the awful show was on the Disney Channel. At 6 am, I put him to bed. He fussed, but I was determined. I put his pacifier in and I laid down. For the next 30 minutes, I would get about 2 minutes of rest for every 1 minute of putting his pacifier back in and holding it in place until I felt it safe to lay down. The only words in my conscious were "Jesus please" and "Mercy". Any dads out there? Can I get an Amen?
He finally fell asleep at 6:45 am. Great I thought. He woke up at 7:00 am. Ugh. He seemed content in the crib, so I left him there. Jen eventually came in at 7:20 am and we began to get ready for the day as a home health nurse was arriving at 8 am.
Today has been a great day. The kids have been playing with him and talking to him all day. He follows them with his eyes wherever they go. It will be an adjustment for all of us, but especially him. Remember, he's been in a hospital bed all of his life. Sitting on the deck, going for a walk, feeling the breeze hit your face, riding in a car - all new experiences for him. We're excited to have him finally home. I think we'll go for a walk now.
Thanks for taking this journey with us. I can't wait to show him to you.
We learned early in the day on Thursday that we would be taking him home. We were excited. He looked good and we felt ready. There seemed to be a flurry of activity and people around us during the day, all indicating how much support we would have in taking him home. It was a great feeling knowing that all these people were behind us. We felt up to the task and R was ready to go.
We got home Thursday night and began preparing all of his medicines and putting away supplies. He fell asleep about 8 pm Thursday night and we finished getting the house in order. Jen slept in a bed upstairs in R's bedroom. As it was a family affair, the girls slept on the floor in R's bedroom (as a show of solidarity I suppose) and Nathan slept in bed next to me. Most certainly, I got the short end of the stick.
I had a baby monitor next to my ear. Do you know that feeling the first night you take a baby home? With every noise, my eyes popped open. Was that him? Did he pull his tube out? Is he leaking stool all over the crib? I set my alarm at 3:55 am to get up and put more formula in his feeds. I saw a note from Jen that she filled it at 3:30 am. I went to bed thinking I may get a full night's sleep on the first night, but not so fast. Jen came down at 4 am and asked me to relieve her. He had been up for 2 hours. I jumped to the occasion, ready to go. 4 am turned to 4:30, then to 5 am, 5:30 am, 6 am. Are you kidding me? He seemed to be tiring. Perhaps it was the 5 am addition of whatever the awful show was on the Disney Channel. At 6 am, I put him to bed. He fussed, but I was determined. I put his pacifier in and I laid down. For the next 30 minutes, I would get about 2 minutes of rest for every 1 minute of putting his pacifier back in and holding it in place until I felt it safe to lay down. The only words in my conscious were "Jesus please" and "Mercy". Any dads out there? Can I get an Amen?
He finally fell asleep at 6:45 am. Great I thought. He woke up at 7:00 am. Ugh. He seemed content in the crib, so I left him there. Jen eventually came in at 7:20 am and we began to get ready for the day as a home health nurse was arriving at 8 am.
Today has been a great day. The kids have been playing with him and talking to him all day. He follows them with his eyes wherever they go. It will be an adjustment for all of us, but especially him. Remember, he's been in a hospital bed all of his life. Sitting on the deck, going for a walk, feeling the breeze hit your face, riding in a car - all new experiences for him. We're excited to have him finally home. I think we'll go for a walk now.
Thanks for taking this journey with us. I can't wait to show him to you.
Wednesday, October 29, 2008
Day 141
Friends,
It has been a very long few weeks. We have waited patiently, sometimes with great anticipation for the day that R would be released from the hospital into our care. Several times over the past few weeks, we were prepared to take him home, only to show up and have our hopes dashed because something was wrong or not ready.
As of today, R is doing very well. He has good strength, he is tolerating his feeds very well and all of his lab results look great. The doctors confirmed today that we can take him home tomorrow!
As our family has prepared for R to come home, we realize that our work is only beginning. He is so worth it. So many of you have lifted him and our family up in prayer over the past several months. We cannot thank you enough for that! It has been a long road and we thank you for walking it with us.
A few requests for the next 24 hours and beyond...
- That he continues to do well with his recovery.
- That R would not pull out his nj tube. When he is out of restraints, he can pull it out in a matter of seconds. We will need to watch him closely.
- That the transition for all of us from hospital to home would go as smoothly as possible.
His Grace is sufficient for us. Thank you for your prayers.
It has been a very long few weeks. We have waited patiently, sometimes with great anticipation for the day that R would be released from the hospital into our care. Several times over the past few weeks, we were prepared to take him home, only to show up and have our hopes dashed because something was wrong or not ready.
As of today, R is doing very well. He has good strength, he is tolerating his feeds very well and all of his lab results look great. The doctors confirmed today that we can take him home tomorrow!
As our family has prepared for R to come home, we realize that our work is only beginning. He is so worth it. So many of you have lifted him and our family up in prayer over the past several months. We cannot thank you enough for that! It has been a long road and we thank you for walking it with us.
A few requests for the next 24 hours and beyond...
- That he continues to do well with his recovery.
- That R would not pull out his nj tube. When he is out of restraints, he can pull it out in a matter of seconds. We will need to watch him closely.
- That the transition for all of us from hospital to home would go as smoothly as possible.
His Grace is sufficient for us. Thank you for your prayers.
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