While at church yesterday, we received a message that R had been switched from the oscillating ventilator to a conventional ventilator. The doctors had felt that he had made enough progress over the past few days to make the switch. Throughout the day Sunday, R's blood gas scores continued to get better. This was a major milestone! As of Monday morning, he remains on the ventilator and adjustments are made as needed after blood draws every four hours.
I woke up this morning and had a voicemail from the hospital. The staff determined that there had been a perforation in his small bowel and R had to have emergency surgery about 1:30 am Monday morning. The doctor said this morning during rounds that they were able to repair the problem and cleaned out the leakage. The downside is that his poor body had to endure another surgery and there is a risk of infection anytime surgery is performed. There is added risk since they had to remove waste that had leaked out of his bowel. The upside is that they were able to correct the tear in his bowel. They were also able to close his incision completely. Previously, his incision remained open with a vacuum (for lack of better words) that promoted drainage and healing of the tissues. The last bit of good news is that now fluids (nutrients, etc.) are making their way along the digestive tract and his bowel is being put to work. We are hoping that, despite the surgery, his bowel and liver and kidneys can begin to function - and function well.
So, R continues to hold our attention. In the past 24 hours, we've gone from elation over his progress with the vent changes to "what is going on here" with the surgery and then back to cautious optimism that he will recover well from the latest surgery and get back on track to making improvements. Quite the rollercoaster for us, but I am continuously reminded how it must be for R. His little body continues to fight. We will continue to fight with him.
Thanks for journeying with us.
Monday, June 30, 2008
Friday, June 27, 2008
Day 24
Jen & I made it up for rounds this morning. The doctors were pleased to see that R had another good night and continued to make slow progress. They decided not to scope him this afternoon, fearing that the risk for complications outweighed the benefit of what would be accomplished with the scope.
R has been on a heart rate medication called amiodarone. If you recall, some time back he was weaned from an IV drip to an oral dose only to have a strong negative reaction to it. Today, the cardiology team cut the rate of amiodarone (via IV drip) by 1/2. If all goes well over the weekend, they are going to meet and discuss options for continuing to wean him off of this medication. His heart rate and blood pressure have been stable for three days now. No arrhythmia's or other complications.
On another good note, R continues to have his ventilation settings slowly adjusted lower. This means his lungs are very slowly getting stronger. If R continues to do well, the doctors will put him on the other ventilator on Sunday or Monday. If the switch is made and R can tolerate it well, this would be a wonderful sign of progress. On the other ventilator, R can eventually be brought off of the medication that keeps him paralyzed and sedated. He would be more aware of what was going on around him and we would be able to hold him. We are cautiously optimistic - and very excited!
The bandaging that covers R's surgical site - his incision and old ostomy site - were changed today. This is the first chance in a week or so that we've been able to see how the site looks. His old ostomy site is healing nicely. The incision from the surgery also looked good. They still have not closed the wound entirely due to the pressure it would cause in his little body.
We will have a chance on Saturday to bring the kids up for a visit. The last time they saw R was three weeks ago last Wednesday - the day after his transplant. We are looking forward to being up there as a family. The kids have been remarkable the past few weeks. This has been a lot for them to process and understand. I would ask that you keep them in your prayers as well.
Thank you for taking this journey with us. Your prayers are greatly appreciated! Blessings!
R has been on a heart rate medication called amiodarone. If you recall, some time back he was weaned from an IV drip to an oral dose only to have a strong negative reaction to it. Today, the cardiology team cut the rate of amiodarone (via IV drip) by 1/2. If all goes well over the weekend, they are going to meet and discuss options for continuing to wean him off of this medication. His heart rate and blood pressure have been stable for three days now. No arrhythmia's or other complications.
On another good note, R continues to have his ventilation settings slowly adjusted lower. This means his lungs are very slowly getting stronger. If R continues to do well, the doctors will put him on the other ventilator on Sunday or Monday. If the switch is made and R can tolerate it well, this would be a wonderful sign of progress. On the other ventilator, R can eventually be brought off of the medication that keeps him paralyzed and sedated. He would be more aware of what was going on around him and we would be able to hold him. We are cautiously optimistic - and very excited!
The bandaging that covers R's surgical site - his incision and old ostomy site - were changed today. This is the first chance in a week or so that we've been able to see how the site looks. His old ostomy site is healing nicely. The incision from the surgery also looked good. They still have not closed the wound entirely due to the pressure it would cause in his little body.
We will have a chance on Saturday to bring the kids up for a visit. The last time they saw R was three weeks ago last Wednesday - the day after his transplant. We are looking forward to being up there as a family. The kids have been remarkable the past few weeks. This has been a lot for them to process and understand. I would ask that you keep them in your prayers as well.
Thank you for taking this journey with us. Your prayers are greatly appreciated! Blessings!
Thursday, June 26, 2008
Day 23
We have been very pleased the past few days with how things are going. R continues to be very sick, however, he has had three good days with no incidents and plenty of rest. The settings on his oscillating ventilator have slowly been lowered. The surgeon is planning to do a scope on his bowel tomorrow afternoon. The scope will show what the inside of the bowel looks like as well as take a small sample to see how the tissue is doing.
The last time the scope was done (2 weeks ago), R did not react well to it. We are hoping that the results of the scope are positive and that he will tolerate it well.
The para-influenza virus in R's lungs continues to be a concern. Jen & I both feel that if he can only shake that, he would begin to make some significant process. We know that it is in God's timing...
Thank you for your prayers. We will update you after rounds and the scope tomorrow.
The last time the scope was done (2 weeks ago), R did not react well to it. We are hoping that the results of the scope are positive and that he will tolerate it well.
The para-influenza virus in R's lungs continues to be a concern. Jen & I both feel that if he can only shake that, he would begin to make some significant process. We know that it is in God's timing...
Thank you for your prayers. We will update you after rounds and the scope tomorrow.
Tuesday, June 24, 2008
Day 21 - II
As I surfed this evening, this certainly hit home....
http://www.foxnews.com/story/0,2933,370941,00.html
http://www.foxnews.com/story/0,2933,370941,00.html
Day 21
R has made it three weeks since transplant! We are thankful for each passing day!
I was at the hospital for a few hours this afternoon. The chest tube that was put in on Sunday is still there and, as of this afternoon, the pneumothorax in his chest is gone! Because the ventilator he is on puts out some higher pressure, there is a chance it can return, however, we are excited that it is gone. That has been the culprit of varying vitals the past few days. The chest tube is likely to stay in for some time while R's lungs are weak and he is vulnerable to getting more of these.
Also done today was an echocardiogram. While I did not speak directly to the cardiologists, it appeared that there were no problems with what was seen.
R continues to have an influenza virus in his lungs. This is the greatest cause for concern at this time. It is halting any attempts at making progress. For the last 2 days, doctors have really done nothing but work to manage his vitals and let him rest.
Jen gave you a great list of prayer requests for his little body. I would move the influenza issue to the top of the list. My sense is that if he can shake this virus, avoid any more pneumothorax's and his lungs get stronger, he may be able to turn the corner and start making some significant process. Until then, we will walk in faith and trust in God for R's needs at this time.
Thank you all for your continued prayers.
I was at the hospital for a few hours this afternoon. The chest tube that was put in on Sunday is still there and, as of this afternoon, the pneumothorax in his chest is gone! Because the ventilator he is on puts out some higher pressure, there is a chance it can return, however, we are excited that it is gone. That has been the culprit of varying vitals the past few days. The chest tube is likely to stay in for some time while R's lungs are weak and he is vulnerable to getting more of these.
Also done today was an echocardiogram. While I did not speak directly to the cardiologists, it appeared that there were no problems with what was seen.
R continues to have an influenza virus in his lungs. This is the greatest cause for concern at this time. It is halting any attempts at making progress. For the last 2 days, doctors have really done nothing but work to manage his vitals and let him rest.
Jen gave you a great list of prayer requests for his little body. I would move the influenza issue to the top of the list. My sense is that if he can shake this virus, avoid any more pneumothorax's and his lungs get stronger, he may be able to turn the corner and start making some significant process. Until then, we will walk in faith and trust in God for R's needs at this time.
Thank you all for your continued prayers.
Sunday, June 22, 2008
Day 19
We called into the nurse's station this morning before church. The nurse was not available to talk to us because she and the surgeon were busy in R's room working on him. The surgeon had to put in a chest tube to drain an air pocket that formed around the lower lobe of his right lung.
Tim and I stayed at church until the announcements were over and then went straight to the hospital. While we were there, the surgeon returned because the chest tube was not working. R's blood pressure was critically low, his oxygen saturation was in the low 80's and he was not doing well. The surgeon repositioned the tube and immediately the air started to flow out. It took over an hour, but R's body began to respond by increasing the oxygen saturation and his blood pressure slowly climbed.
During rounds, the doctor told us that they are going to leave in the chest tube for a couple of days to help the lung repair itself as the lower lobe had collapsed. They are again trying to wean down the settings on both the ventilator and the dialysis machine. Along with these goals, the doctor is going to see how R does with his g-tube clamped. (The tube that leads directly into his stomach.) This will force anything that is in his stomach to hopefully travel through the intestines and not out into the bag that is there now. The doctor wants the intestines and the liver to function again. If he tolerates the g-tube clamped for 24 hours, then they may slowly add food to his stomach. He has not really had any formula feedings in his life, so this would be a first!! Although there is so much to pray for in his little body, I pray that the feedings would be able to begin and the liquid would flow through his intestines without any trouble.
So, if you happen to be keeping a list of needs for R, here is our cheat sheet...
For his heart to stay at a healthy rate and pressure
For his kidneys to begin to function on their own
For his lungs to heal of influenza and the lower right lobe to heal
For the infection in his liver to heal and his liver enzymes come into balance
For his stomach to tolerate liquid and move it into the intestines
For his intestines to "wake up" and begin to absorb the nutrients and digest
and lastly
For the doctors to find the perfect balance of putting in and taking off fluids.
It has been a challenging time. I have been hopeful, hopeless, and everywhere in between. But what I am learning and living is that God is enough, He has the perfect plan, and He has the whole picture. We give R to him daily and trust in Him COMPLETELY.
Thank you for your prayers.
Tim and I stayed at church until the announcements were over and then went straight to the hospital. While we were there, the surgeon returned because the chest tube was not working. R's blood pressure was critically low, his oxygen saturation was in the low 80's and he was not doing well. The surgeon repositioned the tube and immediately the air started to flow out. It took over an hour, but R's body began to respond by increasing the oxygen saturation and his blood pressure slowly climbed.
During rounds, the doctor told us that they are going to leave in the chest tube for a couple of days to help the lung repair itself as the lower lobe had collapsed. They are again trying to wean down the settings on both the ventilator and the dialysis machine. Along with these goals, the doctor is going to see how R does with his g-tube clamped. (The tube that leads directly into his stomach.) This will force anything that is in his stomach to hopefully travel through the intestines and not out into the bag that is there now. The doctor wants the intestines and the liver to function again. If he tolerates the g-tube clamped for 24 hours, then they may slowly add food to his stomach. He has not really had any formula feedings in his life, so this would be a first!! Although there is so much to pray for in his little body, I pray that the feedings would be able to begin and the liquid would flow through his intestines without any trouble.
So, if you happen to be keeping a list of needs for R, here is our cheat sheet...
For his heart to stay at a healthy rate and pressure
For his kidneys to begin to function on their own
For his lungs to heal of influenza and the lower right lobe to heal
For the infection in his liver to heal and his liver enzymes come into balance
For his stomach to tolerate liquid and move it into the intestines
For his intestines to "wake up" and begin to absorb the nutrients and digest
and lastly
For the doctors to find the perfect balance of putting in and taking off fluids.
It has been a challenging time. I have been hopeful, hopeless, and everywhere in between. But what I am learning and living is that God is enough, He has the perfect plan, and He has the whole picture. We give R to him daily and trust in Him COMPLETELY.
Thank you for your prayers.
Saturday, June 21, 2008
Day 18
Remember the comment yesterday about R's medication being switched from an IV drip to an oral delivery. At the time, we called that progress. Little did we know the medication would not be as effective as it had been when taking it through the IV.
Before retiring for the evening last night, Jen & I usually make a quick call up to the PICU to see how R has been doing since we've checked in last. When we called around 11:00 pm Friday evening, we were a bit startled to hear that his heart rate was well over 200 beats per minute, his blood pressure was falling and we could hear alarms going off in his room over the phone. The staff was working hard to gets things under control, including putting ice on him to try to slow his heart rate. So much for falling asleep quickly.
We spent the next hour praying and talking about all of the challenges R has gone through and how this must be taking a toll on his little body. After an hour or so, we called back and were put at ease as the nurse told me his vitals had stabilized and R was going back on the heart rate medication (amiodarone) delivered via an IV drip.
Jen & I made it to rounds this morning. All of R's vitals seemed good, except occasional flare ups from his heart rate. The nurse said it would take some time for the medication to build itself up to a point where these flare ups would subside. The surgeon ordered an increase in R's fluids, thinking he might be a bit dehydrated. We are hoping the extra fluids will help keep the heart rate and blood pressure at good levels, help the kidneys to do a little work and help R to look better (he looked a bit dehydrated). After rounds were over, we were able to sit in the room with R and spend some time with him.
As of 6:00 pm this evening, R has had no irregular signs with his heart rate, but his blood pressure is a little on the low side.
Thank you for your continued prayers.
Before retiring for the evening last night, Jen & I usually make a quick call up to the PICU to see how R has been doing since we've checked in last. When we called around 11:00 pm Friday evening, we were a bit startled to hear that his heart rate was well over 200 beats per minute, his blood pressure was falling and we could hear alarms going off in his room over the phone. The staff was working hard to gets things under control, including putting ice on him to try to slow his heart rate. So much for falling asleep quickly.
We spent the next hour praying and talking about all of the challenges R has gone through and how this must be taking a toll on his little body. After an hour or so, we called back and were put at ease as the nurse told me his vitals had stabilized and R was going back on the heart rate medication (amiodarone) delivered via an IV drip.
Jen & I made it to rounds this morning. All of R's vitals seemed good, except occasional flare ups from his heart rate. The nurse said it would take some time for the medication to build itself up to a point where these flare ups would subside. The surgeon ordered an increase in R's fluids, thinking he might be a bit dehydrated. We are hoping the extra fluids will help keep the heart rate and blood pressure at good levels, help the kidneys to do a little work and help R to look better (he looked a bit dehydrated). After rounds were over, we were able to sit in the room with R and spend some time with him.
As of 6:00 pm this evening, R has had no irregular signs with his heart rate, but his blood pressure is a little on the low side.
Thank you for your continued prayers.
Friday, June 20, 2008
Day 17
I just spoke with R's nurse and she shared nothing but good news. R remains on the high frequency ventilator and 24 hour dialysis. His blood gases are drawn every four hours. His values have been very slowly improving over the last 24 - 36 hours. As R improves, changes will be made to the settings on his ventilator and dialysis so that, eventually, he can be switched to the other ventilator and he can come off of dialysis.
R was also given a particular anti rejection medication for the first time today. He tolerated it well. He also switched from an IV to an oral medication for his heart (rate) medication. He also tolerated that well. The nurse told me she changed all of his dressings and gave him a bath and he tolerated those well also. If only all kids tolerated a bath as well.
We are very thankful to the Lord for this latest update. We know that God's hand is on R and we are going to walk in faith, believing God will restore him to good health. We will be sure to give God His due glory throughout the process. Thank you for praying with us.
R was also given a particular anti rejection medication for the first time today. He tolerated it well. He also switched from an IV to an oral medication for his heart (rate) medication. He also tolerated that well. The nurse told me she changed all of his dressings and gave him a bath and he tolerated those well also. If only all kids tolerated a bath as well.
We are very thankful to the Lord for this latest update. We know that God's hand is on R and we are going to walk in faith, believing God will restore him to good health. We will be sure to give God His due glory throughout the process. Thank you for praying with us.
Thursday, June 19, 2008
Day 16
We've had a request to update the blog a bit earlier in the day. We're happy to oblige.
R continued to remain stable and make progress. Progress defined as getting needed rest. All of his "values" - vital signs and lab results continue to remain stable. This is a blessing because they were up and down for quite some time. The doctors continue to try to wean him (very slowly) off of medication and ventilation settings as much as he will tolerate. As of this morning, the nurses did go back up on a few of his ventilation settings overnight because of the changes they began to see in his vitals. He also received some blood and platelets overnight.
R has not had any major setbacks for the last few days. Progress continues to be slow, but it is progress none the less and we are thankful. Daily, I remind myself that this will be a long journey, but I also pray that God would restore him quickly to good health. Thank you for your continued prayers.
R continued to remain stable and make progress. Progress defined as getting needed rest. All of his "values" - vital signs and lab results continue to remain stable. This is a blessing because they were up and down for quite some time. The doctors continue to try to wean him (very slowly) off of medication and ventilation settings as much as he will tolerate. As of this morning, the nurses did go back up on a few of his ventilation settings overnight because of the changes they began to see in his vitals. He also received some blood and platelets overnight.
R has not had any major setbacks for the last few days. Progress continues to be slow, but it is progress none the less and we are thankful. Daily, I remind myself that this will be a long journey, but I also pray that God would restore him quickly to good health. Thank you for your continued prayers.
Tuesday, June 17, 2008
Day 14
It was two weeks ago tonight that we sat with the surgeon and he told us how well the surgery went. Two weeks later, R is doing well, but he still is in for a long fight. Jen & I are happy to be at his side.
As I was visiting, the internist and some nurses were doing some tests to see how R's lungs were doing. He tolerated the tests so well that they decided to put him on a different ventilator - definitely a step in the right direction. All of R's vitals and blood work remained stable throughout the day.
Jen & I both plan to be up for rounds tomorrow. Just before rounds, they plan to change the bandaging on his incision and ostomy site. We should get some good information tomorrow morning about how he is progressing. We will pray for a good night tonight and hope for a good report tomorrow.
Thank you for taking this journey with us! Your prayers are greatly appreciated!
As I was visiting, the internist and some nurses were doing some tests to see how R's lungs were doing. He tolerated the tests so well that they decided to put him on a different ventilator - definitely a step in the right direction. All of R's vitals and blood work remained stable throughout the day.
Jen & I both plan to be up for rounds tomorrow. Just before rounds, they plan to change the bandaging on his incision and ostomy site. We should get some good information tomorrow morning about how he is progressing. We will pray for a good night tonight and hope for a good report tomorrow.
Thank you for taking this journey with us! Your prayers are greatly appreciated!
Monday, June 16, 2008
Day 13
Yesterday, I promised a noon update. As it is now 8:48 pm, I won't make any more promises. Here is the news of the day...
Jen received a call this morning from the hospital that R was not doing well and we should probably come in. When the hospital tells you to come in, you know it's serious. Jen had been told that R's heart rate had been racing at 280 beats per minute and his blood pressure was falling. There was a liver doctor and "cardiac team" in the room evaluating him at that time.
By the time we arrived about 20 minutes later, R had stabilized and staff were trying to figure out what had happened. They gave him a pretty powerful medication that would keep his heart rate within a safe threshold. Throughout the afternoon, staff was paying close attention to his heart rate rhythm. They also have taken him off of dialysis for today to give his body a break. As of this evening, R is stable and is doing "very well" (in the words of the PICU nurse). He has had a restful day.
We have learned to take the good news and bad news in stride, at the end of the day being thankful that he made it through the day. The hospital staff has mentioned and we are beginning to realize that this could be a very long recovery process. Whatever the time table, we will continue to be thankful for R's progress and will look forward with great anticipation to the day when we will leave the hospital and take R home. What an exciting day that will be!
Thank you for your continued prayers!
Jen received a call this morning from the hospital that R was not doing well and we should probably come in. When the hospital tells you to come in, you know it's serious. Jen had been told that R's heart rate had been racing at 280 beats per minute and his blood pressure was falling. There was a liver doctor and "cardiac team" in the room evaluating him at that time.
By the time we arrived about 20 minutes later, R had stabilized and staff were trying to figure out what had happened. They gave him a pretty powerful medication that would keep his heart rate within a safe threshold. Throughout the afternoon, staff was paying close attention to his heart rate rhythm. They also have taken him off of dialysis for today to give his body a break. As of this evening, R is stable and is doing "very well" (in the words of the PICU nurse). He has had a restful day.
We have learned to take the good news and bad news in stride, at the end of the day being thankful that he made it through the day. The hospital staff has mentioned and we are beginning to realize that this could be a very long recovery process. Whatever the time table, we will continue to be thankful for R's progress and will look forward with great anticipation to the day when we will leave the hospital and take R home. What an exciting day that will be!
Thank you for your continued prayers!
Sunday, June 15, 2008
Day 12
There is not much new news to report today. The bleeding that R had been having for the past few days seems to have been fixed. Doctors decided to pull some of the bandaging off today and found a source putting out a little blood toward the surface of his incision. They were able to cauterize it and, so far, there has been no bleeding. The nurse told us this evening that R's heart rate has been fluctuating to as high as over 200 bpm and then falling to around 170 bpm. They're not sure why it is fluctuating, but they are watching it closely.
Jen & I both plan on attending rounds tomorrow morning to hear from the doctors how they think R is progressing. We will update the blog tomorrow around noon.
We have been told by many people that they have had a hard time posting things on the blog. Jen & I would like to give you our email addresses and welcome you to send us any feedback. I also know that many of you are praying for R. If you'd like, we would be willing to send you a picture of him so that you have a face to put to his name (or initial).
Jen: jenbowes@cox.net
Tim: tbowes@emmanuelfellowship.com
Thank you for your continued prayers. We will update this site tomorrow around noon. Blessings!
Jen & I both plan on attending rounds tomorrow morning to hear from the doctors how they think R is progressing. We will update the blog tomorrow around noon.
We have been told by many people that they have had a hard time posting things on the blog. Jen & I would like to give you our email addresses and welcome you to send us any feedback. I also know that many of you are praying for R. If you'd like, we would be willing to send you a picture of him so that you have a face to put to his name (or initial).
Jen: jenbowes@cox.net
Tim: tbowes@emmanuelfellowship.com
Thank you for your continued prayers. We will update this site tomorrow around noon. Blessings!
Saturday, June 14, 2008
Day 11
R continues to be stable and for that we are thankful. There are so many things that the doctors and nurses are delicately trying to balance. We are amazed and grateful for all of the care they are giving him. As of this evening, here is the days update...
R has gone back on dialysis. Over the past 24 hours, R has retained quite a bit of fluid and they are working to get some of it out. His G-tube (goes into his stomach) was oozing quite a bit of blood throughout the day. The suction on his surgical site was also pulling a lot of blood. R received blood to replace the blood he was losing throughout the day and platelets to help with clotting.
We also learned that R has two infections. One in his lungs and one by his liver. We were told at the start that infection is the number one concern in a surgery like this. We have been told that R is likely to stay on the ventilator for some time because of the infection.
We are so grateful for the prayers that you have been offering on behalf of R and our family over the past few weeks. Many of you have also supported our family in a variety of ways. For this, we are so very appreciative. Many of you are sacrificing with us in hope that R's journey leads us to a place of good health and restoration for his little body. As I think about R's past, he has never (and I do mean never) been at a point where his body has functioned like that of a healthy baby boy. Thank you for joining with us in this journey and hoping and praying for a recovery for R and a testimony for God to get the glory in all of this.
Blessings!
R has gone back on dialysis. Over the past 24 hours, R has retained quite a bit of fluid and they are working to get some of it out. His G-tube (goes into his stomach) was oozing quite a bit of blood throughout the day. The suction on his surgical site was also pulling a lot of blood. R received blood to replace the blood he was losing throughout the day and platelets to help with clotting.
We also learned that R has two infections. One in his lungs and one by his liver. We were told at the start that infection is the number one concern in a surgery like this. We have been told that R is likely to stay on the ventilator for some time because of the infection.
We are so grateful for the prayers that you have been offering on behalf of R and our family over the past few weeks. Many of you have also supported our family in a variety of ways. For this, we are so very appreciative. Many of you are sacrificing with us in hope that R's journey leads us to a place of good health and restoration for his little body. As I think about R's past, he has never (and I do mean never) been at a point where his body has functioned like that of a healthy baby boy. Thank you for joining with us in this journey and hoping and praying for a recovery for R and a testimony for God to get the glory in all of this.
Blessings!
Friday, June 13, 2008
Day 10
Thank you God for touching R and keeping him through the night! R's little body has gone through so much in the past 24 hours. God's creation of the human body is amazing.
Through dialysis, some of the fluid was drained from his tissues, and he looks much better in his face. However, too much vascular fluid left his body overnight and this morning his heart rate soared and his blood pressure dropped. The doctors added fluid and blood products to help correct this. He has stabilized in many areas as of this evening. His oxygen levels are good. His heart rate is good. His blood pressure is a little high, but not terrible.
Those are all the goods for the afternoon. The not so good is that he has a virus in his lungs. It is a virus that they cannot give him medication for, his body needs to heal itself. I was told that he will be on the ventilator for several weeks because of this illness. He cannot fight off the sickness like our bodies can because his immune system is so depressed. (He is on anti-rejection medications for his new organs and this suppresses his immune system.)
R continues to be sedated and on a medication that paralyzes him. He is on the oscillating ventilator but they discontinued the dialysis for this evening. They may put him back on tomorrow morning depending on how he does for the night.
Thank you for all the encouraging words and phone calls over the past 24 hours. Thank you for coming to the hospital when we needed you. Tim and I have been so blessed by all of you. We are so grateful to all of our prayer warriors out there!
Through dialysis, some of the fluid was drained from his tissues, and he looks much better in his face. However, too much vascular fluid left his body overnight and this morning his heart rate soared and his blood pressure dropped. The doctors added fluid and blood products to help correct this. He has stabilized in many areas as of this evening. His oxygen levels are good. His heart rate is good. His blood pressure is a little high, but not terrible.
Those are all the goods for the afternoon. The not so good is that he has a virus in his lungs. It is a virus that they cannot give him medication for, his body needs to heal itself. I was told that he will be on the ventilator for several weeks because of this illness. He cannot fight off the sickness like our bodies can because his immune system is so depressed. (He is on anti-rejection medications for his new organs and this suppresses his immune system.)
R continues to be sedated and on a medication that paralyzes him. He is on the oscillating ventilator but they discontinued the dialysis for this evening. They may put him back on tomorrow morning depending on how he does for the night.
Thank you for all the encouraging words and phone calls over the past 24 hours. Thank you for coming to the hospital when we needed you. Tim and I have been so blessed by all of you. We are so grateful to all of our prayer warriors out there!
Thursday, June 12, 2008
Day 9 - Part II
We made it up to the hospital around noon. We were told R had made it through surgery. The doctor found a bleed by his liver and was able to repair it. Rather than sew him up, they put some mesh in his wounds. In addition, they took about 5 cm off his ostomy and it looked very good. For all practical purposes, the surgery was a success. When we arrived, however, R was not doing very well and was very unstable.
The two biggest problems during recovery was that he was putting out a tremendous amount of blood. His blood pressure was critically low, his oxygen saturation was low, his hemoglobin was low and the chemical makeup of some of the things in his blood were out of balance. At the start of his recovery, we were fearing the worst as things did not look good. As the afternoon progressed, they started R on dialysis. Not only did it help his kidneys put off some fluid, but they circulated his blood through the machine to clean it. In addition, they also gave him some blood. The doctors and staff were watching him closely to see if the blood loss was due to more bleeding internally or just his body putting off much of the fluids he had been given and retained due to the two surgeries in two days he had gone through. Over the next few hours, the blood he had received helped his blood pressure, oxygen and hemoglobin levels climb and stabilize. His fluid output slowed, giving the doctors hope that there was no bleeding. Whatever chemical imbalances in his blood seemed to improve. He continues to be stable and showing some signs of improvement.
Today has been an emotional roller coaster. Not going well, making progress, deteriorating conditions, signs of improvement. Not a typical day, but not untypical either.
The two biggest problems during recovery was that he was putting out a tremendous amount of blood. His blood pressure was critically low, his oxygen saturation was low, his hemoglobin was low and the chemical makeup of some of the things in his blood were out of balance. At the start of his recovery, we were fearing the worst as things did not look good. As the afternoon progressed, they started R on dialysis. Not only did it help his kidneys put off some fluid, but they circulated his blood through the machine to clean it. In addition, they also gave him some blood. The doctors and staff were watching him closely to see if the blood loss was due to more bleeding internally or just his body putting off much of the fluids he had been given and retained due to the two surgeries in two days he had gone through. Over the next few hours, the blood he had received helped his blood pressure, oxygen and hemoglobin levels climb and stabilize. His fluid output slowed, giving the doctors hope that there was no bleeding. Whatever chemical imbalances in his blood seemed to improve. He continues to be stable and showing some signs of improvement.
Today has been an emotional roller coaster. Not going well, making progress, deteriorating conditions, signs of improvement. Not a typical day, but not untypical either.
Day 9 - Part I
I talked with R's nurse at 6:30 this morning. He was unstable all night. His blood pressure and his oxygen saturation levels were both low. They had given him medication to keep his blood pressure up. It seems they did all they were able to do to maintain some pressure and keep him oxygenated. They had also given him blood because his hemoglobin scores were low. The doctor made a decision to bring him into surgery this morning, suspecting he was bleeding internally. As of 8:45 am, he is still in surgery.
We had been told at the start of this process that this can occur. Many times during a transplant, small perforations can be made in the bowel that lead to bleeding down the road. While it is not uncommon, it is a set back.
We are hoping that the doctor can find the source and fix the problem. We are also hoping this will stabilize his blood pressure and oxygen levels and will help with the respiratory issues he has had over the last few days.
Your continued prayers are greatly appreciated. We will update this later today.
We had been told at the start of this process that this can occur. Many times during a transplant, small perforations can be made in the bowel that lead to bleeding down the road. While it is not uncommon, it is a set back.
We are hoping that the doctor can find the source and fix the problem. We are also hoping this will stabilize his blood pressure and oxygen levels and will help with the respiratory issues he has had over the last few days.
Your continued prayers are greatly appreciated. We will update this later today.
Wednesday, June 11, 2008
Day 8
Today was a reminder of the long journey this will be. It was not a good day. The staff often remind us that this sometimes happens with these little guys.
The three tubes that R had taken out a few days ago were put back in. He is on a different ventilator because the previous ventilator was at it's highest level for assisting him to breathe. During rounds, the doctors were concerned because R's oxygen saturation levels kept dropping. He was given medication to keep him comfortable and to paralyze him. Keeping him still helped the new ventilator to be as effective as it could.
In the afternoon, a scope with a small camera was inserted into R's ostomy to see how it was doing and to take a biopsy. Along with seeing what is going on inside the organ, the biopsy will show whether or not the organ is showing rejection. The doctor stated that one side of the stoma had good blood flow and looked good. He had a difficult time penetrating the other side.
The doctor also ordered a CT scan this afternoon. Because R's condition had worsened, they wanted to see if there was any leaks of air or fluid into his belly area. The CT scan this afternoon confirmed what they had thought. There was some pressure in his belly from some air. Suspecting this, the doctors were on standby, ready to take him into surgery. The doctors had to reopen his belly and were able to relieve the pressure. The doctor said that it seemed some of the walls of the bowel were thinner, possibly indicating they had been irritated by the earlier procedure.
As of 11:00 pm, the nurse tells us that they are having a difficult time stabilizing his blood pressure and his oxygen saturation levels are in the low 80%. They should be at 100%.
He has had a difficult day today. We will pray that he stabilizes for the night.
The three tubes that R had taken out a few days ago were put back in. He is on a different ventilator because the previous ventilator was at it's highest level for assisting him to breathe. During rounds, the doctors were concerned because R's oxygen saturation levels kept dropping. He was given medication to keep him comfortable and to paralyze him. Keeping him still helped the new ventilator to be as effective as it could.
In the afternoon, a scope with a small camera was inserted into R's ostomy to see how it was doing and to take a biopsy. Along with seeing what is going on inside the organ, the biopsy will show whether or not the organ is showing rejection. The doctor stated that one side of the stoma had good blood flow and looked good. He had a difficult time penetrating the other side.
The doctor also ordered a CT scan this afternoon. Because R's condition had worsened, they wanted to see if there was any leaks of air or fluid into his belly area. The CT scan this afternoon confirmed what they had thought. There was some pressure in his belly from some air. Suspecting this, the doctors were on standby, ready to take him into surgery. The doctors had to reopen his belly and were able to relieve the pressure. The doctor said that it seemed some of the walls of the bowel were thinner, possibly indicating they had been irritated by the earlier procedure.
As of 11:00 pm, the nurse tells us that they are having a difficult time stabilizing his blood pressure and his oxygen saturation levels are in the low 80%. They should be at 100%.
He has had a difficult day today. We will pray that he stabilizes for the night.
Monday, June 9, 2008
Day 6
I started off yesterday by saying things can change day by day. What a difference a day makes. I made it in for rounds this morning. In the words of the surgeon, "the big picture is R is right at or a little ahead of where we would like to see him at this time in his recovery." That was music to my ears. Sometimes when you are in the midst of a process, you forget to take a step back and look at the big picture. That also serves as a spiritual reminder for me.
There was other great news today. R was breathing much better than he has been the last few days. The settings on his ventilator were down, meaning he was doing much of the work and doing it well. The tube that runs through his nose to his stomach was used to suction out his stomach. It was removed today. There was an arterial line in the artery in his groin that was used to measure blood pressure and draw blood. That was also removed. Lastly, R's catheter was removed as well. He still has the ventilator, two central lines (going into his heart), a G tube into his stomach and an ostomy site, but three less tubes is a great thing. The less tubes there are, the less chance for infection.
Another first today was Jen being able to give a sponge bath (for R that is). After the bath, she was able to hold him for the first time. R was uncomfortable with being held, but he settled down after a few minutes. The nurse was also able to suction a lot of mucous from his mouth that had come up from his lungs. Sounds gross, but it really helped clear up his lungs.
On another note, R's biological mother (knowing that I was a minister) asked if I would baptize R. Jen had the opportunity to briefly share about baptism and baby dedications to her. The mother seemed very open and interested. Also interested was the nurse. She asked some questions about baptism. As Jen and I debriefed tonight about the day's events, we felt God had opened a door.
Lastly, we are thankful for the great reports today. We hold on to these and optimistically look forward to the progress that tomorrow brings. Jen & I are being challenged. Not just with the obvious logistics of managing our family and a foster child in intensive care, but with maintaining our focus on providing as much love and care for R as we possibly can in the few hours a day we have with him while battling against the distractions that surround us, particularly in R's hospital room. We know God's grace is sufficient.
Thank you for your continued prayers. It is an amazing thought of the prayers of the saints that go before the Lord on behalf of R. Blessings!
There was other great news today. R was breathing much better than he has been the last few days. The settings on his ventilator were down, meaning he was doing much of the work and doing it well. The tube that runs through his nose to his stomach was used to suction out his stomach. It was removed today. There was an arterial line in the artery in his groin that was used to measure blood pressure and draw blood. That was also removed. Lastly, R's catheter was removed as well. He still has the ventilator, two central lines (going into his heart), a G tube into his stomach and an ostomy site, but three less tubes is a great thing. The less tubes there are, the less chance for infection.
Another first today was Jen being able to give a sponge bath (for R that is). After the bath, she was able to hold him for the first time. R was uncomfortable with being held, but he settled down after a few minutes. The nurse was also able to suction a lot of mucous from his mouth that had come up from his lungs. Sounds gross, but it really helped clear up his lungs.
On another note, R's biological mother (knowing that I was a minister) asked if I would baptize R. Jen had the opportunity to briefly share about baptism and baby dedications to her. The mother seemed very open and interested. Also interested was the nurse. She asked some questions about baptism. As Jen and I debriefed tonight about the day's events, we felt God had opened a door.
Lastly, we are thankful for the great reports today. We hold on to these and optimistically look forward to the progress that tomorrow brings. Jen & I are being challenged. Not just with the obvious logistics of managing our family and a foster child in intensive care, but with maintaining our focus on providing as much love and care for R as we possibly can in the few hours a day we have with him while battling against the distractions that surround us, particularly in R's hospital room. We know God's grace is sufficient.
Thank you for your continued prayers. It is an amazing thought of the prayers of the saints that go before the Lord on behalf of R. Blessings!
Sunday, June 8, 2008
Day 5
Jen & I have learned throughout this process that things can change day by day, hour by hour or minute by minute. I had the chance to spend a few hours with R this morning. I noticed when I first arrived that some of his vitals looked to be a little off from what they had been running, but with a little medicine and a treatment, they all came back to within good ranges. I was pleased to hear that his body was able to get rid of some of the fluid he had been retaining over the past few days. Not all of it is gone, but it is a good sign. The doctors mentioned during rounds that they believe the fluid loss has come from both some of the tissue in the body and some from the vascular system. This afternoon, R was given some blood to replenish any lost blood cells. They hoped that this would bring some of his vitals back to better levels.
Jen had the chance to spend some time this evening with R. She said that he looked better. All of his vitals looked good and his CO2 levels were much lower than they had been - he was breathing better. We are hoping that he continues to respond to the treatments on his lungs and that he could be taken off of the ventilator around mid-week.
There are a few things that we will be praying for until our next post:
- that R's vital signs continue to be stable
- that R's lungs will clear up, his body can get rid of retained fluids and he can come off of the ventilator
- that anything that might hinder, slow down or be a distraction to R's recovery would be eliminated
We count it a privilege to be a part of R's life and lift him up in our prayers. Thank you for joining us on this journey.
Jen had the chance to spend some time this evening with R. She said that he looked better. All of his vitals looked good and his CO2 levels were much lower than they had been - he was breathing better. We are hoping that he continues to respond to the treatments on his lungs and that he could be taken off of the ventilator around mid-week.
There are a few things that we will be praying for until our next post:
- that R's vital signs continue to be stable
- that R's lungs will clear up, his body can get rid of retained fluids and he can come off of the ventilator
- that anything that might hinder, slow down or be a distraction to R's recovery would be eliminated
We count it a privilege to be a part of R's life and lift him up in our prayers. Thank you for joining us on this journey.
Friday, June 6, 2008
Day 3
R has had a difficult day today. His body continues to retain fluid and his output is minimal. The respiratory nurse also needed to increase the help that the respirator is giving him to breathe. She said that his lungs are having a difficult time oxygenating the capillaries. The nurses seemed concerned this evening. I am so glad that the doctors and nurses have all the knowledge that they do. They have been wonderful. As wonderful as they are we know that it is God, and Him alone that sustains R's little body. We pray that God touches R's kidneys and lungs tonight and causes them to work as He has designed them to work.
To be truthful, we are a little anxious for R to respond well tonight. The respirator is no longer assisting him at a moderate level, but at a high level. We are praying specifically tonight that God will touch R's respiratory system and kidneys and make it so that they are doing their job well. Thank you for your continued prayers.
To be truthful, we are a little anxious for R to respond well tonight. The respirator is no longer assisting him at a moderate level, but at a high level. We are praying specifically tonight that God will touch R's respiratory system and kidneys and make it so that they are doing their job well. Thank you for your continued prayers.
Thursday, June 5, 2008
Day 2
R continues to be stable today, however the doctors are concerned about the amount of fluid that he is retaining. They commented that his kidneys are not functioning at a high enough level because some of the fluid is leaving the bloodstream and being absorbed into surrounding tissue. They have increased a medicine to help his body reabsorb the fluid from his tissues into his blood stream and allow the kidneys to do their job. R went through the same issues with his kidneys on previous surgeries he has had. If the medicines fail to do this, he may start to receive dialysis. Also, the doctors will leave him on the venilator as there was some fluid on his lungs. As soon as his lungs clear, they may attempt to take him off of the ventilator.
There are some remarkable things that are occurring already. His skin is losing the yellowish tint and turning a lovely pink/tan. And the most joyous moment of the day was when I was reading to him and he began to move about, fluttered his eyes open and they were bright and white! If you have seen previous pictures of him, you may have noticed that the whites of his eyes had turned yellow from the advanced liver disease. The doctors told us today that his new liver is doing its job! I was so excited and just commented how beautiful he is and how well he is doing and I felt him squeeze my finger in his little hand. He then closed his eyes and went back to sleep.
The kids came up today to get their first peek at R. They seemed to be a little nervous at first, but then started to move closer, ask questions, and talk to him. We are so proud of how our children are sacrificing some of their summer time with us and are loving R as their sibling. God has surely prepared their hearts as He has ours.
Thank you for your continued prayers. We are taking things one day at a time. Your comments are an encouragement to us. Blessings!
There are some remarkable things that are occurring already. His skin is losing the yellowish tint and turning a lovely pink/tan. And the most joyous moment of the day was when I was reading to him and he began to move about, fluttered his eyes open and they were bright and white! If you have seen previous pictures of him, you may have noticed that the whites of his eyes had turned yellow from the advanced liver disease. The doctors told us today that his new liver is doing its job! I was so excited and just commented how beautiful he is and how well he is doing and I felt him squeeze my finger in his little hand. He then closed his eyes and went back to sleep.
The kids came up today to get their first peek at R. They seemed to be a little nervous at first, but then started to move closer, ask questions, and talk to him. We are so proud of how our children are sacrificing some of their summer time with us and are loving R as their sibling. God has surely prepared their hearts as He has ours.
Thank you for your continued prayers. We are taking things one day at a time. Your comments are an encouragement to us. Blessings!
Wednesday, June 4, 2008
Welcome to Bowes Believe!
We would like to share our journey with you, our friends and family, as we walk through this transplant recovery. In addition to providing updates, we will use this site as a place to share how we got started in foster care. It has been an amazing journey.
Please note that we need to keep our pumpkin's identity confidential, so please do not use his name in any of the posts. We will refer to him as R.
Post Transplant
Day 1
After being awake for close to 24 hours, we were exhausted, yet relieved that he did so well. R is stable, and is still on the ventilator and sedation meds. The dr. took him off the vent., but he did not breathe well enough on his own, so they put him back on it. They will try again tomorrow. His vitals continue to look good. We know that it will be one day at a time. Thank you for your prayers. We are believing for a full recovery!
As you probably have noticed, the title of our blog is Hebrews 11:1. A dear friend was praying for us and was led to this verse in the Bible, "Now faith is being sure of what we hope for and certain of what we do not see." By faith we are believing that God is moving in mighty ways in our lives and in R's. Our hope is that R will have a full and speedy recovery. Although we see obstacles and a long road ahead, we are certain of God's hand in all of it. He has already accomplished the miracle of putting R on the active transplant list, He provided a donor, and He brought R through a very complicated and difficult transplant. Oh, how HE loves HIS children!
Please note that we need to keep our pumpkin's identity confidential, so please do not use his name in any of the posts. We will refer to him as R.
Post Transplant
Day 1
After being awake for close to 24 hours, we were exhausted, yet relieved that he did so well. R is stable, and is still on the ventilator and sedation meds. The dr. took him off the vent., but he did not breathe well enough on his own, so they put him back on it. They will try again tomorrow. His vitals continue to look good. We know that it will be one day at a time. Thank you for your prayers. We are believing for a full recovery!
As you probably have noticed, the title of our blog is Hebrews 11:1. A dear friend was praying for us and was led to this verse in the Bible, "Now faith is being sure of what we hope for and certain of what we do not see." By faith we are believing that God is moving in mighty ways in our lives and in R's. Our hope is that R will have a full and speedy recovery. Although we see obstacles and a long road ahead, we are certain of God's hand in all of it. He has already accomplished the miracle of putting R on the active transplant list, He provided a donor, and He brought R through a very complicated and difficult transplant. Oh, how HE loves HIS children!
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