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.
Saturday, December 6, 2008
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.
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