We don't have any details now, other than R made it through surgery and was able to rest well over the course of the night. He received quite a bit of fluid that they are working now to take off of him. We will update this later on in the day.
Thank you for praying.
Sunday, July 20, 2008
Saturday, July 19, 2008
Day 46
R has been struggling the past few days. He has not been able to process anything that goes into his stomach. It usually drains out his ng tube (through the nose). Another concern is that he has been vomiting the past few days. Today, the doctors noticed some redness around his incision site. They decided to send him down for a CT scan. While I don't know the specific results, we are told that he will be going in for surgery around midnight tonight.
We will update when we hear the results. Thank you for your continued prayers.
We will update when we hear the results. Thank you for your continued prayers.
Thursday, July 17, 2008
Day 44
Our apologies for the lack of updates over the past few days. Life happens.
The challenging part about giving updates on R is that he can make progress for a day or two or a week, but have a bad hour and then be back to square one. What's even more challenging is when you can't give a good explanation as to why a setback occurs. As for today, we're thankful that he's still with us. I am reminded as I write that he is still fragile, not nearly out of the woods.
He remains in intensive care on a ventilator, several medications and dialysis. New news of the day is that he's got a bladder infection. Hopefully the antibiotics can clear it up quickly. We were told that he threw up for a few hours this evening. For some reason, his stomach just wasn't tolerating much in it. The nurse ended up putting in an ng tube (through his nose into his stomach) to help relieve some of the pressure.
We continue to pray for his kidneys to start working, his lungs to get stronger and his heart rate to remain stable. We are also praying for the bladder infection to go away quickly. Thank you for continuing to pray with us.
The challenging part about giving updates on R is that he can make progress for a day or two or a week, but have a bad hour and then be back to square one. What's even more challenging is when you can't give a good explanation as to why a setback occurs. As for today, we're thankful that he's still with us. I am reminded as I write that he is still fragile, not nearly out of the woods.
He remains in intensive care on a ventilator, several medications and dialysis. New news of the day is that he's got a bladder infection. Hopefully the antibiotics can clear it up quickly. We were told that he threw up for a few hours this evening. For some reason, his stomach just wasn't tolerating much in it. The nurse ended up putting in an ng tube (through his nose into his stomach) to help relieve some of the pressure.
We continue to pray for his kidneys to start working, his lungs to get stronger and his heart rate to remain stable. We are also praying for the bladder infection to go away quickly. Thank you for continuing to pray with us.
Sunday, July 13, 2008
Day 40
Jen & I had the opportunity to spend a few hours with R this afternoon. The past week had shown a great deal of progress and improvement, but today was a reminder that he still is a very sick boy.
We were enjoying our time in the room with R when, during a breathing treatment, his heart rate suddenly shot up to 220 beats per minute. Soon after, his blood pressure began to fall. There was no obvious reason for this to be happening, but the staff (God bless them all) went to work. Within a few minutes, the room began to fill with people - the nurse, respiratory therapist, resident, fellow (on the phone), lead nurse, someone charting all that was going on, EKG technician, x-ray technician, surgery transplant liaison and attending physician - Dr. Grant (she is awesome) all working, diagnosing and praying (Jen & I did the last part). For the next 15 - 20 minutes, R's heart rate continued to be well over 200+ beats per minute and his blood pressure struggled to stay above 60's/40's. During this time, R stayed awake, alert, responsive and pink - obviously all good signs.
After about 30 minutes, some fluids and medication, R began to stabilize and the attending explained to us that all of the excitement was attributed to a combination of factors: an albuterol treatment for breathing, perhaps a bit dehydrated and low levels of amiodarone (which keeps his heart rate in check).
Keep in mind that just prior to this 30 minutes of excitement, Jen & I had been having a nice quiet time in the room. As the commotion began, we held our ground in the corner of the room with a look of "what in the world is going on" on our faces. The nurse was good to encourage us a few times during this ordeal that all was under control and not to get too worried. I am quite certain that our "deer in the headlights" look on our face (with a mask on no less) told her that we were beyond worried. After everything calmed down at 4 pm, R had stabilized, most people had left and Jen & I were ready for another valium prescription and, once again, we didn't get one.
On a serious note, we are thankful for all of the progress R has shown for the past week. Today is not a setback, just a reminder of how fragile he is. His biggest challenge right now is his kidneys. It is difficult to balance his fluids when his kidneys do not work and he is on dialysis. He will spend the night off of dialysis, so we are going to pray tonight for his kidneys to begin working and pee!
Thank you for joining with us this evening and praying for him. We will update you tomorrow.
We were enjoying our time in the room with R when, during a breathing treatment, his heart rate suddenly shot up to 220 beats per minute. Soon after, his blood pressure began to fall. There was no obvious reason for this to be happening, but the staff (God bless them all) went to work. Within a few minutes, the room began to fill with people - the nurse, respiratory therapist, resident, fellow (on the phone), lead nurse, someone charting all that was going on, EKG technician, x-ray technician, surgery transplant liaison and attending physician - Dr. Grant (she is awesome) all working, diagnosing and praying (Jen & I did the last part). For the next 15 - 20 minutes, R's heart rate continued to be well over 200+ beats per minute and his blood pressure struggled to stay above 60's/40's. During this time, R stayed awake, alert, responsive and pink - obviously all good signs.
After about 30 minutes, some fluids and medication, R began to stabilize and the attending explained to us that all of the excitement was attributed to a combination of factors: an albuterol treatment for breathing, perhaps a bit dehydrated and low levels of amiodarone (which keeps his heart rate in check).
Keep in mind that just prior to this 30 minutes of excitement, Jen & I had been having a nice quiet time in the room. As the commotion began, we held our ground in the corner of the room with a look of "what in the world is going on" on our faces. The nurse was good to encourage us a few times during this ordeal that all was under control and not to get too worried. I am quite certain that our "deer in the headlights" look on our face (with a mask on no less) told her that we were beyond worried. After everything calmed down at 4 pm, R had stabilized, most people had left and Jen & I were ready for another valium prescription and, once again, we didn't get one.
On a serious note, we are thankful for all of the progress R has shown for the past week. Today is not a setback, just a reminder of how fragile he is. His biggest challenge right now is his kidneys. It is difficult to balance his fluids when his kidneys do not work and he is on dialysis. He will spend the night off of dialysis, so we are going to pray tonight for his kidneys to begin working and pee!
Thank you for joining with us this evening and praying for him. We will update you tomorrow.
Friday, July 11, 2008
Day 38
R has had a very good week. The settings on his ventilator are very low and they are doing sprints with him now. This is when they turn the machine's work down to 0 for an hour and give him the opportunity to do all of the work. This will hopefully strengthen his respiratory system for the day that they decide to take him off the ventilator. Some of the doctors talked about taking him off on Sunday. We will see as the weekend progresses.
Another new area for us is his feedings. They have hooked him up to a slow drip of a low fat/high protein substance that goes into his stomach. He tolerated this extremely well for 24 hours so they increased the dosage. At 7:00pm tonight, he became sick and vomited. The formula was also draining from his g tube. They are going to stop the feeding line until 10:00pm tonight and then resume at the lower dosage. This is brand new stuff for his body, so we are thrilled that he has tolerated any of the feeds.
Did you ever think a group of people would be cheering for someone to pee? At rounds today when the nurse told the group of transplant doctors and nurses that he had a wet diaper, everyone was excited. Even though R wet a little last night, it was not enough for the doctor to be satisfied. She wants to see more output, so they are continuing the dialysis machine for 12 hours on and then 12 hours off.
R has his little hands in restraints now. The nurses are amazed at how quickly he can go for one of his lines and tug. Our favorite nurse was laughing today saying that he is so used to hospital life that he knows exactly how to maneuver his fingers and hands to rip off tape and try to get the lines off of him and out of his nose. It was great to see him so awake, yet I am so looking forward to the day that he is free from the ventilator and all of these tubes. What a blessing it will be for R to be able to play with toys and be able to move around on his own! We give God the praise for all He has done in R's body and all He will do. R is nothing short of many miracles. Thank you for your prayers.
Another new area for us is his feedings. They have hooked him up to a slow drip of a low fat/high protein substance that goes into his stomach. He tolerated this extremely well for 24 hours so they increased the dosage. At 7:00pm tonight, he became sick and vomited. The formula was also draining from his g tube. They are going to stop the feeding line until 10:00pm tonight and then resume at the lower dosage. This is brand new stuff for his body, so we are thrilled that he has tolerated any of the feeds.
Did you ever think a group of people would be cheering for someone to pee? At rounds today when the nurse told the group of transplant doctors and nurses that he had a wet diaper, everyone was excited. Even though R wet a little last night, it was not enough for the doctor to be satisfied. She wants to see more output, so they are continuing the dialysis machine for 12 hours on and then 12 hours off.
R has his little hands in restraints now. The nurses are amazed at how quickly he can go for one of his lines and tug. Our favorite nurse was laughing today saying that he is so used to hospital life that he knows exactly how to maneuver his fingers and hands to rip off tape and try to get the lines off of him and out of his nose. It was great to see him so awake, yet I am so looking forward to the day that he is free from the ventilator and all of these tubes. What a blessing it will be for R to be able to play with toys and be able to move around on his own! We give God the praise for all He has done in R's body and all He will do. R is nothing short of many miracles. Thank you for your prayers.
Wednesday, July 9, 2008
Day 36
R is making some great strides. Here is the news of the day...
He had been off of dialysis for 24 hours and did very well - no complications. As he can tolerate it, the doctors plan is to alternate on/off of dialysis until his kidneys start working. This could be a few hours or a few weeks - it all depends on him.
R is having his blood gas checked every six hours. Every result has shown improvement. The settings on his ventilator are as low as they can get. He is doing most, if not all of the work.
He continues to have his g tube clamped all the time and ng tube clamped for periods of time to see how his stomach and intestines tolerate things going through them. So far so good. There is a great deal more output in his ostomy bag, indicating things are making their way through his little system.
We also heard the results of the biopsy on the section of his bowel that was removed during last Saturday's surgery. The results were negative - meaning the body is not rejecting the organ!
A tube that was in his abdominal area to drain fluids from the surgery has been removed.
The last news of the day is that he is starting to be weaned on his medications for pain and sedation. The process started last night and as long as he does well, they will continue to bring those medications down.
It seems as though he has turned the corner, but we will continue to pray. Most importantly right now, his kidneys need to start working so he can pee!
He had been off of dialysis for 24 hours and did very well - no complications. As he can tolerate it, the doctors plan is to alternate on/off of dialysis until his kidneys start working. This could be a few hours or a few weeks - it all depends on him.
R is having his blood gas checked every six hours. Every result has shown improvement. The settings on his ventilator are as low as they can get. He is doing most, if not all of the work.
He continues to have his g tube clamped all the time and ng tube clamped for periods of time to see how his stomach and intestines tolerate things going through them. So far so good. There is a great deal more output in his ostomy bag, indicating things are making their way through his little system.
We also heard the results of the biopsy on the section of his bowel that was removed during last Saturday's surgery. The results were negative - meaning the body is not rejecting the organ!
A tube that was in his abdominal area to drain fluids from the surgery has been removed.
The last news of the day is that he is starting to be weaned on his medications for pain and sedation. The process started last night and as long as he does well, they will continue to bring those medications down.
It seems as though he has turned the corner, but we will continue to pray. Most importantly right now, his kidneys need to start working so he can pee!
Tuesday, July 8, 2008
Day 35
R continues to improve! He was taken off of dialysis today at 1:30 and so far his vitals still look really good. He has not urinated as of 10:35pm, but the nurse said that it may take him several days. The team will evaluate him again tomorrow morning about when and how often to put him on dialysis.
R's ventilator settings continue to be dropped as well. He is breathing much more on his own with the machine doing only a little of the work.
He is tolerating his ng and g tubes (to the stomach) being clamped for longer periods than yesterday and his output in his ostomy was the best it had been since the transplant! (This means that fluid is moving through his intestines.)
We still have not heard the reports from the pathology lab, but will be asking about that tomorrow morning.
The kids and I were able to attend a meeting about g-tube feedings and the typical course a child who has received this type of transplant will go through when learning to take in nutrition orally. It was very good information for all of us. The kids learned that they will have a very important role. R will probably want to put food in his mouth when he sees them eating. She called that "positive peer pressure." The nurse giving the lecture also said that siblings are perhaps the biggest influence on positive oral experiences (eating by mouth) for these transplant babies.
Although this is some time away, it was exciting to talk about it with the kids and imagine what it will be like when R comes home.
I don't want to get ahead of things here. R still needs his lungs to heal completely, his kidneys to function, and his vitals to remain stable. We continue to pray that his new liver and bowel work perfectly and for God to continue the healing process in his other organs. Thank you for your continued prayers.
R's ventilator settings continue to be dropped as well. He is breathing much more on his own with the machine doing only a little of the work.
He is tolerating his ng and g tubes (to the stomach) being clamped for longer periods than yesterday and his output in his ostomy was the best it had been since the transplant! (This means that fluid is moving through his intestines.)
We still have not heard the reports from the pathology lab, but will be asking about that tomorrow morning.
The kids and I were able to attend a meeting about g-tube feedings and the typical course a child who has received this type of transplant will go through when learning to take in nutrition orally. It was very good information for all of us. The kids learned that they will have a very important role. R will probably want to put food in his mouth when he sees them eating. She called that "positive peer pressure." The nurse giving the lecture also said that siblings are perhaps the biggest influence on positive oral experiences (eating by mouth) for these transplant babies.
Although this is some time away, it was exciting to talk about it with the kids and imagine what it will be like when R comes home.
I don't want to get ahead of things here. R still needs his lungs to heal completely, his kidneys to function, and his vitals to remain stable. We continue to pray that his new liver and bowel work perfectly and for God to continue the healing process in his other organs. Thank you for your continued prayers.
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