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.
Monday, September 29, 2008
Day 111
I am very pleased to report the following...
- R has been moved out of ICU to the Pediatrics floor. He continues to be in good spirits and doing very well.
- UNMC has informed us that he is ready to be discharged from the hospital when two conditions are met: we are prepared to take him and handle his care and administration of meds and the state makes us the official foster care family for him.
- Jen and I were trained on his medications over the weekend on how to administer them and other concerns to be aware of while he is with us. We are hoping to make it in a few more times in the next week to learn a little more about his wound care and have the chance to administer some meds ourselves.
- We were told today that the state will make things final this Friday, allowing us to take him home next Monday, October 6.
- One bit of bad news...We learned today that R has been diagnosed with C-Diff. It is a spore that gets in to the system and is treated with antibiotics for about two weeks. It is very contagious. We are told this happens frequently when the immune system is suppressed, but the symptoms could be unenjoyable, to put it mildly.
We cannot tell you how excited we are to finally be at a point to receive him into our home. He just turned 16 months on September 27. We are so looking forward to working with him to help him in his recovery process. We are looking for grace from God to help us in this transition time and so that we can complete everything we need to do for his care.
Thank you for journeying with us. Next Monday represents an end to one season and the beginning of another. We hope that you will continue to journey with us.
Blessings!
- R has been moved out of ICU to the Pediatrics floor. He continues to be in good spirits and doing very well.
- UNMC has informed us that he is ready to be discharged from the hospital when two conditions are met: we are prepared to take him and handle his care and administration of meds and the state makes us the official foster care family for him.
- Jen and I were trained on his medications over the weekend on how to administer them and other concerns to be aware of while he is with us. We are hoping to make it in a few more times in the next week to learn a little more about his wound care and have the chance to administer some meds ourselves.
- We were told today that the state will make things final this Friday, allowing us to take him home next Monday, October 6.
- One bit of bad news...We learned today that R has been diagnosed with C-Diff. It is a spore that gets in to the system and is treated with antibiotics for about two weeks. It is very contagious. We are told this happens frequently when the immune system is suppressed, but the symptoms could be unenjoyable, to put it mildly.
We cannot tell you how excited we are to finally be at a point to receive him into our home. He just turned 16 months on September 27. We are so looking forward to working with him to help him in his recovery process. We are looking for grace from God to help us in this transition time and so that we can complete everything we need to do for his care.
Thank you for journeying with us. Next Monday represents an end to one season and the beginning of another. We hope that you will continue to journey with us.
Blessings!
Wednesday, September 24, 2008
Day 106
Read on for some WONDERFUL NEWS!
On the last post, I shared with you our focus for the week. Here are the results...
- R has been able to get plenty of rest and his body is responding very well to care.
- He is not on any oxygen.
- Feedings are going at the maximum amount for his weight. He did manage to pull the nj tube (goes in his nose, through his stomach and into his intestine) out again over the weekend, but all is well now.
- His lingering sinus/chest congestion seems to be all but gone. He has a few more days of antiobiotics left.
The fantastic news continues...the doctors have given orders for R to move out of the PICU to the Pediatric floor. They also have asked us to schedule some time to begin our training for his discharge - meaning that they will train us on how to care for him, give him medications, etc. I asked the Transplant Nurse Coordinator what things need to happen in order for him to be discharged. She went through the criteria of when transplant patients are released and R is beyond all of them, except for training of the caretakers. In short, we might be able to take him home in as short a time as 2 weeks!!!
Our focus for the next week is this...
- Jen & I can find some time to get up to the hospital together to get the training and fully understand all the care we need to give him.
- There would be minimal disruption in our children's lives for the next few weeks.
- That R continues to improve and is able to be discharged as quickly as possible.
On the last post, I shared with you our focus for the week. Here are the results...
- R has been able to get plenty of rest and his body is responding very well to care.
- He is not on any oxygen.
- Feedings are going at the maximum amount for his weight. He did manage to pull the nj tube (goes in his nose, through his stomach and into his intestine) out again over the weekend, but all is well now.
- His lingering sinus/chest congestion seems to be all but gone. He has a few more days of antiobiotics left.
The fantastic news continues...the doctors have given orders for R to move out of the PICU to the Pediatric floor. They also have asked us to schedule some time to begin our training for his discharge - meaning that they will train us on how to care for him, give him medications, etc. I asked the Transplant Nurse Coordinator what things need to happen in order for him to be discharged. She went through the criteria of when transplant patients are released and R is beyond all of them, except for training of the caretakers. In short, we might be able to take him home in as short a time as 2 weeks!!!
Our focus for the next week is this...
- Jen & I can find some time to get up to the hospital together to get the training and fully understand all the care we need to give him.
- There would be minimal disruption in our children's lives for the next few weeks.
- That R continues to improve and is able to be discharged as quickly as possible.
Wednesday, September 17, 2008
Day 99
Any concerns about what had been coming out of R's ostomy site and what would need to be done about it were all but put to rest this morning during rounds. Staff indicated that what had been coming out of his ostomy site was most likely (some medical term I cannot remember) and not the formula itself. In reviewing R's history, he had done this previously as the amount of formula he had been getting was being increased. Doctors will continue to monitor it (as they do everything else), but not much of a concern.
We were also informed today that play time is equally as important as his time to rest. OT, PT and Family Life departments are engaging him in activities throughout the week. We are attempting to get up to the hospital as much as we can to spend time playing with him also.
Our focus for the next week...
- that R would get the quality rest and enough activity that his body needs.
- that he will be able to come off of oxygen
- that the feedings would continue and increase to the amount his body weight needs
- that any lingering sinus/chest congestion would disappear
As I think about tomorrow (Day 100 since surgery), I can't help but wonder if we are one-half, one-third, or two-thirds the way through his recovery. I don't know, but we really want to get him home! On a personal note, our family is in the midst of a challenge balancing life (family time, kids activities, homeschooling and more) with getting up to spend time with R. A final request would be that the time we spend with him could be supernaturally multiplied - not for our benefit, but for his healing process.
Thank you for taking this journey with us.
We were also informed today that play time is equally as important as his time to rest. OT, PT and Family Life departments are engaging him in activities throughout the week. We are attempting to get up to the hospital as much as we can to spend time playing with him also.
Our focus for the next week...
- that R would get the quality rest and enough activity that his body needs.
- that he will be able to come off of oxygen
- that the feedings would continue and increase to the amount his body weight needs
- that any lingering sinus/chest congestion would disappear
As I think about tomorrow (Day 100 since surgery), I can't help but wonder if we are one-half, one-third, or two-thirds the way through his recovery. I don't know, but we really want to get him home! On a personal note, our family is in the midst of a challenge balancing life (family time, kids activities, homeschooling and more) with getting up to spend time with R. A final request would be that the time we spend with him could be supernaturally multiplied - not for our benefit, but for his healing process.
Thank you for taking this journey with us.
Tuesday, September 16, 2008
Day 98
For the past week, R has continued to rest and recover. For the most part, he is awake and alert and we are told that, when he is feeling well, helping him be active is best for him. For the past week, R has been on feedings for most of the time. A formula is given to him through his nj tube that feeds directly into his intestine. For the past 24 - 36 hours, doctors have been watching some discharge from his ostomy site. What had been "stool" looking was now looking more and more like the formula itself, raising suspicion that the feed might be coming right out.
Doctors plan to re-evaluate him on Wednesday morning. If the concern is confirmed, surgery might be needed to explore what is going on in there. This was disappointing news because R had been doing so well for the past several weeks. His incision from the last surgery just now healed completely. It will be too bad to have to re-open the wound.
We will update the blog when we know more. Thanks for praying.
Doctors plan to re-evaluate him on Wednesday morning. If the concern is confirmed, surgery might be needed to explore what is going on in there. This was disappointing news because R had been doing so well for the past several weeks. His incision from the last surgery just now healed completely. It will be too bad to have to re-open the wound.
We will update the blog when we know more. Thanks for praying.
Sunday, September 7, 2008
Day 89
R made wonderful progress this week. He is completely off of TPN and is up to 50cc's an hour of his formula! What a miracle. His intestines are tolerating the feeds, his output of fluids and urine is good, and his incision wound continues to heal nicely. What an amazing week. The drs. have said that if he had not been transplanted by now, he would probably have died.
He continues to be a testimony of God's mercy and healing. Afterall, Jesus is the same before, now, and forever. And HE has always been in the business of miracles. What an amazing blessing to walk this journey and see God work in so many people.
Thank you for your prayers. I feel in my heart that the intercession of prayer is so powerful. Please continue as you feel led. Physically, R is going to eventually have to endure another operation to fix his stoma sites and g-tube site. He is also receiving much physical and occupational therapy to help with the muscles that haven't been used in so long. He is developmentally, physically, and most likely emotionally delayed. But all this can come along with God working through the hospital staff, and HIS healing touch.
I would like to ask a special prayer, (if it feels right in your spirit) we would like to eventually adopt R. Would you ask for favor on us and for God to open doors? Also, it would be so fabulous to have R home at Christmas. I know God's timing and ours can be very different. I feel selfish even saying this, but I would love for him to have a Christmas out of a hospital setting.
Thank you friends.
j
He continues to be a testimony of God's mercy and healing. Afterall, Jesus is the same before, now, and forever. And HE has always been in the business of miracles. What an amazing blessing to walk this journey and see God work in so many people.
Thank you for your prayers. I feel in my heart that the intercession of prayer is so powerful. Please continue as you feel led. Physically, R is going to eventually have to endure another operation to fix his stoma sites and g-tube site. He is also receiving much physical and occupational therapy to help with the muscles that haven't been used in so long. He is developmentally, physically, and most likely emotionally delayed. But all this can come along with God working through the hospital staff, and HIS healing touch.
I would like to ask a special prayer, (if it feels right in your spirit) we would like to eventually adopt R. Would you ask for favor on us and for God to open doors? Also, it would be so fabulous to have R home at Christmas. I know God's timing and ours can be very different. I feel selfish even saying this, but I would love for him to have a Christmas out of a hospital setting.
Thank you friends.
j
Wednesday, September 3, 2008
Day 85
R continues to make progress. His feeds through his tube are increasing and the TPN or nourishment through his central line is decreasing! The goal is to stop the TPN completely and have the formula as his nutrition. He is also moving around more and has been very social. His smiles are contagious, his raspberries are hilarious, and he is proving that he knows what he likes and dislikes by shaking his head, "no, no, no" and kicking his foot towards the hands of the nurses! We love the time with him. We pray for continued healing physically. We have started to pray for him emotionally as well. As you know, he is a ward of the state and has a very complicated familial history. As he begins the journey toward physical wellness, his emotional journey also begins.
Through this entire journey, (since we are speaking of them) I have learned something so wonderful. It is to trust God through everything. I know... I know... this is such a cliche'. But when the going gets tough, you really find out how deep your convictions are. To be in the center of a crisis, or a painful situation, or something new, may be exactly where God wants you to be. For me, I want to always be in the center of God's will. Sometimes this puts me in places where I'm uncomfortable. But I trust HIM to use me and change me anyway that HE wants to so that I can glorify HIM. The phrase that God is more concerned about our character than our comfort is so true! There were and still are so many times of uncertainty, fear, frustration, etc. etc. At many of these moments in the beginning of this journey I would ask God, "Why?" I am learning to state more quickly now, "I trust You, Lord." "Use this time to change me for You." Look at your life. Ask yourself, am I in the center of God's will? Am I allowing the circumstances to mold me and shape me the way God wants me to be? I am convinced that in any circumstance, when one is open to the Holy Spirit comforming him/her closer to Christ, then he/she is in the center of God's will. If you are reading this and you want to know more about having a personal relationship with Jesus, please feel free to email me personally and I will share about the most rewarding relationship that you will ever know or have. HE is that amazing, and that worthy, and that REAL. This isn't a "religious" blurp. This is about life and death. R was very close to physical death. This is spiritual and eternal life and death.
Because many of you have followed this personal story for so long and have continued to support us and R, I wanted to use this as an opportunity to share with you God's incredible love and plan for all of us to be with HIM now on earth and then forever. God bless you and keep you.
With love,
j
jenbowes@cox.net
Through this entire journey, (since we are speaking of them) I have learned something so wonderful. It is to trust God through everything. I know... I know... this is such a cliche'. But when the going gets tough, you really find out how deep your convictions are. To be in the center of a crisis, or a painful situation, or something new, may be exactly where God wants you to be. For me, I want to always be in the center of God's will. Sometimes this puts me in places where I'm uncomfortable. But I trust HIM to use me and change me anyway that HE wants to so that I can glorify HIM. The phrase that God is more concerned about our character than our comfort is so true! There were and still are so many times of uncertainty, fear, frustration, etc. etc. At many of these moments in the beginning of this journey I would ask God, "Why?" I am learning to state more quickly now, "I trust You, Lord." "Use this time to change me for You." Look at your life. Ask yourself, am I in the center of God's will? Am I allowing the circumstances to mold me and shape me the way God wants me to be? I am convinced that in any circumstance, when one is open to the Holy Spirit comforming him/her closer to Christ, then he/she is in the center of God's will. If you are reading this and you want to know more about having a personal relationship with Jesus, please feel free to email me personally and I will share about the most rewarding relationship that you will ever know or have. HE is that amazing, and that worthy, and that REAL. This isn't a "religious" blurp. This is about life and death. R was very close to physical death. This is spiritual and eternal life and death.
Because many of you have followed this personal story for so long and have continued to support us and R, I wanted to use this as an opportunity to share with you God's incredible love and plan for all of us to be with HIM now on earth and then forever. God bless you and keep you.
With love,
j
jenbowes@cox.net
Monday, August 25, 2008
Day 76
It has really been several weeks of taking steps in the right direction - for which we are very thankful. Last night, Jen, Hannah & I went up for a visit. We were able to spend time playing with him in his crib. He loves to look in the mirror. We were even able to get a few smiles out of him! It was great to see him have fun like a little boy should. Today, however, he is not feeling so well. It seems he has developed an infection in his central line. It's being treated with antiobiotics. In addition, he has some sort of chest cold and congestion. The nurse decided to put him on oxygen because he had a bit labored breathing with all of the crud in his chest. He was scheduled for a biopsy this afternoon. The last biopsy showed some mild rejection - we'll see what this one shows.
The other area being watched is his wound. His incision continues to heal nicely. There is a great deal of fluid/stool coming out of the fistula on his abdomen. We are hoping that it heals into a nice new ostomy site.
There still is no timeline for R's departure from the PICU to the Ped's floor and then discharged to us. We fully understand that it will take time for his body to heal. We also truly believe that it will greatly help the healing process for him to come home with us. We look forward to the day when he joins our family in our house.
Thanks for praying with us.
The other area being watched is his wound. His incision continues to heal nicely. There is a great deal of fluid/stool coming out of the fistula on his abdomen. We are hoping that it heals into a nice new ostomy site.
There still is no timeline for R's departure from the PICU to the Ped's floor and then discharged to us. We fully understand that it will take time for his body to heal. We also truly believe that it will greatly help the healing process for him to come home with us. We look forward to the day when he joins our family in our house.
Thanks for praying with us.
Wednesday, August 20, 2008
Day 71
Please forgive us for the lack of updates on the blog. They might be less frequent than before, but please continue to pray for his healing. Our little buddy is still in the intensive care unit, but has made great strides the past few weeks. Here is an update...
- He remains off of the ventilator and is breathing very well.
- He has been off of dialysis since the last post - about two weeks now. He was on a diuretic medication (lasix) to help him pee. He did so well, they took him off and he continued to pee. This morning, they did start him on a small amount again because he had not done much the past 24 hours.
- Last week, he pulled out his central line. This was used to give him medications directly into the bloodstream. He was taken to surgery to replace it.
- A scope was performed two days ago. Overall, the doctor was pleased. He did say there were some signs of mild rejection, but feels steroids should take care of it.
- R has a nj-tube in - it runs through his nose to his bowel. Through the tube, doctors were able to feed him. Last evening, he decided to pull it out. We're not sure if he had had enough of it or didn't like the color of the tube - he doesn't seem to want to talk about it. Needless to say, since this tube is his lifeline, it is going back in today and the doctor has said that he needs to learn to leave it in.
- On the abdominal front, R's incision continues to heal nicely. The fistula (sp?) that developed in the middle of his incision is where his body has decided to put out the stool. It has been a challenge for the nurses to collect all of the stool and fluids coming out of the fistula, ostomy site, mucous fistula and g-tube site. Poor guy has a lot of drainage areas.
Despite all that is going on, R is alert and awake. We see flares of his personality coming through sometimes (i.e. pulling tubes out). He still has a long way to go, but we are so thankful that God has brought him this far. We enjoy all of the time we have with him, especially the few times we've been able to hold him. We look forward to continued healing and an increase in his mobility.
Thank you for your continued prayers!
- He remains off of the ventilator and is breathing very well.
- He has been off of dialysis since the last post - about two weeks now. He was on a diuretic medication (lasix) to help him pee. He did so well, they took him off and he continued to pee. This morning, they did start him on a small amount again because he had not done much the past 24 hours.
- Last week, he pulled out his central line. This was used to give him medications directly into the bloodstream. He was taken to surgery to replace it.
- A scope was performed two days ago. Overall, the doctor was pleased. He did say there were some signs of mild rejection, but feels steroids should take care of it.
- R has a nj-tube in - it runs through his nose to his bowel. Through the tube, doctors were able to feed him. Last evening, he decided to pull it out. We're not sure if he had had enough of it or didn't like the color of the tube - he doesn't seem to want to talk about it. Needless to say, since this tube is his lifeline, it is going back in today and the doctor has said that he needs to learn to leave it in.
- On the abdominal front, R's incision continues to heal nicely. The fistula (sp?) that developed in the middle of his incision is where his body has decided to put out the stool. It has been a challenge for the nurses to collect all of the stool and fluids coming out of the fistula, ostomy site, mucous fistula and g-tube site. Poor guy has a lot of drainage areas.
Despite all that is going on, R is alert and awake. We see flares of his personality coming through sometimes (i.e. pulling tubes out). He still has a long way to go, but we are so thankful that God has brought him this far. We enjoy all of the time we have with him, especially the few times we've been able to hold him. We look forward to continued healing and an increase in his mobility.
Thank you for your continued prayers!
Monday, August 11, 2008
Day 62
Sorry for the delay. We were away for a week taking a break. Here is the latest...
- A biopsy was performed last Thursday. The results came back with some mild rejection. Not good news, but the doctors were not surprised and prescribed some steroids. They seem to think it will take care of the problem. Another scope/biopsy is tentatively planned for Tuesday or Wednesday to see how things are going.
- R continues to be off of the ventilator. His respiration rate has slowed since the last time we saw him. He had been breathing like the ventilator - sometimes as many as 1.5 - 2 breaths per second. Now his rate is a little more normal. His lungs are getting stronger as time passes.
- As of today, R has been off of dialysis for 4 days. He is urinating more than he had been - above the minimal level set to keep him off of dialysis. His blood work also shows that his body (through the urine) is able to rid itself of waste products.
- His incision is healing very well. There is a pressure vacuum still attached that is greatly helping the healing process. He had a g tube that went into his stomach. He pulled that out over the weekend. Instead of putting the tube back in, they have opted to put a bag over it to collect any fluids that come out.
- During rounds today, a decision was made to have his arterial line pulled out of his leg. One less tube - yeah! If he does well today, they will take his catheter out tomorrow. Another reason to celebrate.
- R has been on a cardiac medication called amiodarone. The amount given has been decreasing, however, there is some question about switching from an IV dose to an oral dose. If you recall, the previous two times they've tried that, his heart has not responded well. A consult with cardiology is being set up.
As tubes disappear, R's mobility increases. We have been able to hold him over the past few days. We are looking forward to seeing if they will let us take him for short walks and do other things - as much as he will tolerate.
I hope that you are as excited as we are about the progress he is showing. There are still a number of areas of concern, but good news is such a breath of fresh air. Thank you for praying!
- A biopsy was performed last Thursday. The results came back with some mild rejection. Not good news, but the doctors were not surprised and prescribed some steroids. They seem to think it will take care of the problem. Another scope/biopsy is tentatively planned for Tuesday or Wednesday to see how things are going.
- R continues to be off of the ventilator. His respiration rate has slowed since the last time we saw him. He had been breathing like the ventilator - sometimes as many as 1.5 - 2 breaths per second. Now his rate is a little more normal. His lungs are getting stronger as time passes.
- As of today, R has been off of dialysis for 4 days. He is urinating more than he had been - above the minimal level set to keep him off of dialysis. His blood work also shows that his body (through the urine) is able to rid itself of waste products.
- His incision is healing very well. There is a pressure vacuum still attached that is greatly helping the healing process. He had a g tube that went into his stomach. He pulled that out over the weekend. Instead of putting the tube back in, they have opted to put a bag over it to collect any fluids that come out.
- During rounds today, a decision was made to have his arterial line pulled out of his leg. One less tube - yeah! If he does well today, they will take his catheter out tomorrow. Another reason to celebrate.
- R has been on a cardiac medication called amiodarone. The amount given has been decreasing, however, there is some question about switching from an IV dose to an oral dose. If you recall, the previous two times they've tried that, his heart has not responded well. A consult with cardiology is being set up.
As tubes disappear, R's mobility increases. We have been able to hold him over the past few days. We are looking forward to seeing if they will let us take him for short walks and do other things - as much as he will tolerate.
I hope that you are as excited as we are about the progress he is showing. There are still a number of areas of concern, but good news is such a breath of fresh air. Thank you for praying!
Friday, August 1, 2008
Day 59
R remains off of the ventilator and his saturation levels are at 100%. He is breathing rapidly and the doctors decided to give him a nasal canula with some high pressure air going through it - in hopes that his respiration rate will slow a bit. Big picture - he is still doing great.
They also removed his ng tube - meaning his face is now clear of any tubes, etc.
His vitals are good and the priorities (in no particular order) are...
- rest
- to start peeing
- no infection
As to the comment made on Day 57's post...Amen! If you have not read it, you need to - and consider it. We welcome your comments. We're thankful for your prayers. We're blessed to be in the midst of this process and desire for God to get the glory in all of it.
The next update on this blog will not be until Thursday, August 7.
They also removed his ng tube - meaning his face is now clear of any tubes, etc.
His vitals are good and the priorities (in no particular order) are...
- rest
- to start peeing
- no infection
As to the comment made on Day 57's post...Amen! If you have not read it, you need to - and consider it. We welcome your comments. We're thankful for your prayers. We're blessed to be in the midst of this process and desire for God to get the glory in all of it.
The next update on this blog will not be until Thursday, August 7.
Wednesday, July 30, 2008
Day 57
No more vent!
Around 9:00 am, doctors took him off of the ventilator and there were no complications. I was in to see him at 11:00 am when the doctors came around on rounds. They are very pleased with how he looks and his response to coming off of the vent. It was great to see his face without this big tube obstructing the view and going down his throat. R was awake and responsive. He had been awake and free from medicine for quite some time, so he was pretty tired from the morning's activities. The nurse was going to give him some medication that would cause some sleepiness, so I did not stay long.
They hope to remove his ng tube tomorrow. It runs through his nose to his stomach. If they do, then his whole head and face would be tube free!
The next major milestone will be coming off of dialysis. This will happen only when he pees on a regular basis. As always, there remains a risk of infection.
We are so thankful for the great news today! We hope you are as encouraged as we are and will continue to pray through these other challenges he faces, altogether knowing God is in control and creating a magnificent testimony for His glory.
Around 9:00 am, doctors took him off of the ventilator and there were no complications. I was in to see him at 11:00 am when the doctors came around on rounds. They are very pleased with how he looks and his response to coming off of the vent. It was great to see his face without this big tube obstructing the view and going down his throat. R was awake and responsive. He had been awake and free from medicine for quite some time, so he was pretty tired from the morning's activities. The nurse was going to give him some medication that would cause some sleepiness, so I did not stay long.
They hope to remove his ng tube tomorrow. It runs through his nose to his stomach. If they do, then his whole head and face would be tube free!
The next major milestone will be coming off of dialysis. This will happen only when he pees on a regular basis. As always, there remains a risk of infection.
We are so thankful for the great news today! We hope you are as encouraged as we are and will continue to pray through these other challenges he faces, altogether knowing God is in control and creating a magnificent testimony for His glory.
Tuesday, July 29, 2008
Day 56
Great news today! We were told that if R has a good night tonight, they are likely to extubate him in the morning. No more ventilator! If he is off the ventilator, it would also mean no more IV drips of versed and fentanyl - medications used for sedation and pain killers.
While we're optimistic, he still could have a setback, but as of this evening at 9:40 pm, all is well.
We'll be excited to update the blog tomorrow and let you know. As for prayer requests...
- that all goes well with coming off the ventilator
- that he will start to pee enough to come off of dialysis
- that his body will continue to get stronger even though there are some significant changes coming tomorrow
Thanks for praying! Blessings!
While we're optimistic, he still could have a setback, but as of this evening at 9:40 pm, all is well.
We'll be excited to update the blog tomorrow and let you know. As for prayer requests...
- that all goes well with coming off the ventilator
- that he will start to pee enough to come off of dialysis
- that his body will continue to get stronger even though there are some significant changes coming tomorrow
Thanks for praying! Blessings!
Monday, July 28, 2008
Day 55
R looks great! Rounds were brief today as the doctor said he looks great and hopes that the ventilator can be taken off on Wednesday. That was great news.
A wound nurse was working on R's wounds this morning. All of the bandaging was off and it was amazing to see the large incision (not closed all the way) with a portion of his intestine exposed; his ostomy site (pink as can be); his old ostomy site and the previous location of his g tube (waiting to heal). Each of these four sites has a bag attached to it that collects any stool or other fluids that manage to make their way out. If you recall, the portion of the exposed intestine is what was scheduled to be repaired in surgery a week ago last Saturday. The nurse explained that it is beginning to heal and will (hopefully) end up being another location for stool to be collected. The concern is if it does not heal (so far so good) or if stool leaks into his belly (has not happened yet).
A continued area of concern is his kidneys. R is peeing more, but not at the volume they would like to see. We are believing it will just take a little more time.
We are thankful for the progress he has made over the past 9 days. The rest has done him a great deal of good.
Join us and believe in faith that God will continue to do an amazing work in his little body - even to the amazement of the doctors and nurses that care for him. All a testimony to God's glory.
A wound nurse was working on R's wounds this morning. All of the bandaging was off and it was amazing to see the large incision (not closed all the way) with a portion of his intestine exposed; his ostomy site (pink as can be); his old ostomy site and the previous location of his g tube (waiting to heal). Each of these four sites has a bag attached to it that collects any stool or other fluids that manage to make their way out. If you recall, the portion of the exposed intestine is what was scheduled to be repaired in surgery a week ago last Saturday. The nurse explained that it is beginning to heal and will (hopefully) end up being another location for stool to be collected. The concern is if it does not heal (so far so good) or if stool leaks into his belly (has not happened yet).
A continued area of concern is his kidneys. R is peeing more, but not at the volume they would like to see. We are believing it will just take a little more time.
We are thankful for the progress he has made over the past 9 days. The rest has done him a great deal of good.
Join us and believe in faith that God will continue to do an amazing work in his little body - even to the amazement of the doctors and nurses that care for him. All a testimony to God's glory.
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