No more vent!
Around 9:00 am, doctors took him off of the ventilator and there were no complications. I was in to see him at 11:00 am when the doctors came around on rounds. They are very pleased with how he looks and his response to coming off of the vent. It was great to see his face without this big tube obstructing the view and going down his throat. R was awake and responsive. He had been awake and free from medicine for quite some time, so he was pretty tired from the morning's activities. The nurse was going to give him some medication that would cause some sleepiness, so I did not stay long.
They hope to remove his ng tube tomorrow. It runs through his nose to his stomach. If they do, then his whole head and face would be tube free!
The next major milestone will be coming off of dialysis. This will happen only when he pees on a regular basis. As always, there remains a risk of infection.
We are so thankful for the great news today! We hope you are as encouraged as we are and will continue to pray through these other challenges he faces, altogether knowing God is in control and creating a magnificent testimony for His glory.
Wednesday, July 30, 2008
Tuesday, July 29, 2008
Day 56
Great news today! We were told that if R has a good night tonight, they are likely to extubate him in the morning. No more ventilator! If he is off the ventilator, it would also mean no more IV drips of versed and fentanyl - medications used for sedation and pain killers.
While we're optimistic, he still could have a setback, but as of this evening at 9:40 pm, all is well.
We'll be excited to update the blog tomorrow and let you know. As for prayer requests...
- that all goes well with coming off the ventilator
- that he will start to pee enough to come off of dialysis
- that his body will continue to get stronger even though there are some significant changes coming tomorrow
Thanks for praying! Blessings!
While we're optimistic, he still could have a setback, but as of this evening at 9:40 pm, all is well.
We'll be excited to update the blog tomorrow and let you know. As for prayer requests...
- that all goes well with coming off the ventilator
- that he will start to pee enough to come off of dialysis
- that his body will continue to get stronger even though there are some significant changes coming tomorrow
Thanks for praying! Blessings!
Monday, July 28, 2008
Day 55
R looks great! Rounds were brief today as the doctor said he looks great and hopes that the ventilator can be taken off on Wednesday. That was great news.
A wound nurse was working on R's wounds this morning. All of the bandaging was off and it was amazing to see the large incision (not closed all the way) with a portion of his intestine exposed; his ostomy site (pink as can be); his old ostomy site and the previous location of his g tube (waiting to heal). Each of these four sites has a bag attached to it that collects any stool or other fluids that manage to make their way out. If you recall, the portion of the exposed intestine is what was scheduled to be repaired in surgery a week ago last Saturday. The nurse explained that it is beginning to heal and will (hopefully) end up being another location for stool to be collected. The concern is if it does not heal (so far so good) or if stool leaks into his belly (has not happened yet).
A continued area of concern is his kidneys. R is peeing more, but not at the volume they would like to see. We are believing it will just take a little more time.
We are thankful for the progress he has made over the past 9 days. The rest has done him a great deal of good.
Join us and believe in faith that God will continue to do an amazing work in his little body - even to the amazement of the doctors and nurses that care for him. All a testimony to God's glory.
A wound nurse was working on R's wounds this morning. All of the bandaging was off and it was amazing to see the large incision (not closed all the way) with a portion of his intestine exposed; his ostomy site (pink as can be); his old ostomy site and the previous location of his g tube (waiting to heal). Each of these four sites has a bag attached to it that collects any stool or other fluids that manage to make their way out. If you recall, the portion of the exposed intestine is what was scheduled to be repaired in surgery a week ago last Saturday. The nurse explained that it is beginning to heal and will (hopefully) end up being another location for stool to be collected. The concern is if it does not heal (so far so good) or if stool leaks into his belly (has not happened yet).
A continued area of concern is his kidneys. R is peeing more, but not at the volume they would like to see. We are believing it will just take a little more time.
We are thankful for the progress he has made over the past 9 days. The rest has done him a great deal of good.
Join us and believe in faith that God will continue to do an amazing work in his little body - even to the amazement of the doctors and nurses that care for him. All a testimony to God's glory.
Friday, July 25, 2008
Day 52
I was able to be at rounds this morning for the first time all week. Our other 3 kids are taking swimming lessons in the mornings and having a great time! I was extremely pleased when I walked in and saw how beautiful R's blood pressure and heart rate were. The nurse on duty said he has been doing great all morning and he even had 20cc's of urine output! Not a lot, but enough to smile about.
Tim and I returned later in the afternoon and saw that he again was resting very comfortably and his vitals looked great. The nurse told us that this was probably his best day yet. I know that most of you cannot imagine what his belly looks like, but it is even crazier now. He has 4 ostomy bags on his gut. These are plastic appliances that adhere to the skin and collect stool. Well, remember when he kept pulling his g-tube out? It will not stay in now, so they have a bag covering the site. Then the new and old stoma's (part of the intestine) have a bag, and lastly there is an area on his incision that is leaking stool. And this area has a bag. The nurses work so hard to keep him clean and comfortable. They are the best.
The doctors are hoping that the area leaking stool will eventually heal on its own. They do not want to go in surgically, as it may cause more damage than good. The prognosis is that it may take months for it to heal on its own. We pray that our Healer will speed up the process and continue to keep his body free from infection as it heals.
We thank God for this day, as He is the only One who is in charge. It is so wonderful to watch His goodness. We have learned to give R to the Lord, and now the surgeons are leaving it to Him also by not operating again at this time. What an amazing testimony of God's hand. Sometimes life's circumstances cause us to have no control just so we can watch and witness the One who Truly IS.
God Bless you all. God is good...all the time.
Tim and I returned later in the afternoon and saw that he again was resting very comfortably and his vitals looked great. The nurse told us that this was probably his best day yet. I know that most of you cannot imagine what his belly looks like, but it is even crazier now. He has 4 ostomy bags on his gut. These are plastic appliances that adhere to the skin and collect stool. Well, remember when he kept pulling his g-tube out? It will not stay in now, so they have a bag covering the site. Then the new and old stoma's (part of the intestine) have a bag, and lastly there is an area on his incision that is leaking stool. And this area has a bag. The nurses work so hard to keep him clean and comfortable. They are the best.
The doctors are hoping that the area leaking stool will eventually heal on its own. They do not want to go in surgically, as it may cause more damage than good. The prognosis is that it may take months for it to heal on its own. We pray that our Healer will speed up the process and continue to keep his body free from infection as it heals.
We thank God for this day, as He is the only One who is in charge. It is so wonderful to watch His goodness. We have learned to give R to the Lord, and now the surgeons are leaving it to Him also by not operating again at this time. What an amazing testimony of God's hand. Sometimes life's circumstances cause us to have no control just so we can watch and witness the One who Truly IS.
God Bless you all. God is good...all the time.
Wednesday, July 23, 2008
Day 50
Jen & I cannot thank everyone enough for your prayers for Robert - and us. I know that God has sustained R and us over the past 50+ days of this journey. I'm sure you have noticed that the frequency of our updates has diminished the past week or so. I don't know that I ever imagined how much energy this would take out of us. We sometimes feel weak, but know that the Lord will show Himself faithful and strong in the midst of our weakness. Lastly, we plan to take a break from August 1 -7. We'll be taking some time as a family to get away and recharge.
On to the little man...
For the past few days, R has remained relatively stable. He has an occasional leap of heart rate or blood pressure, but a quick drink of something in his IV usually fixes it. Issues with his heart seem better - not nearly the irregularities that have been present in the past. His lungs seem to be doing very well. Even today during rounds, there was some discussion of taking him off of the ventilator, when the rest of his body is ready. His kidneys continue to be on vacation. Again, doctors say they will start when they are ready. We hope it is soon.
The biggest area of concern is his gut. He has a perforation in his bowel. The normal remedy would be surgery, however, because he is so fragile in there, the doctors fear that any surgery might do more damage than good. There is pressure in R's gut that is pushing the stool out of his intestine and through the incision that was made for his surgery. This sounds rather gross and looks even worse, but the doctor is pleased that the body is getting it out, one way or another. As long as he can stay stable and infection free, they will be pleased and see if the body can remedy the problem on it's own.
Thank you for continuing to pray with us. Each day that goes by, our anticipation grows for the days that are coming where he makes great strides toward a full recovery!
On to the little man...
For the past few days, R has remained relatively stable. He has an occasional leap of heart rate or blood pressure, but a quick drink of something in his IV usually fixes it. Issues with his heart seem better - not nearly the irregularities that have been present in the past. His lungs seem to be doing very well. Even today during rounds, there was some discussion of taking him off of the ventilator, when the rest of his body is ready. His kidneys continue to be on vacation. Again, doctors say they will start when they are ready. We hope it is soon.
The biggest area of concern is his gut. He has a perforation in his bowel. The normal remedy would be surgery, however, because he is so fragile in there, the doctors fear that any surgery might do more damage than good. There is pressure in R's gut that is pushing the stool out of his intestine and through the incision that was made for his surgery. This sounds rather gross and looks even worse, but the doctor is pleased that the body is getting it out, one way or another. As long as he can stay stable and infection free, they will be pleased and see if the body can remedy the problem on it's own.
Thank you for continuing to pray with us. Each day that goes by, our anticipation grows for the days that are coming where he makes great strides toward a full recovery!
Monday, July 21, 2008
Day 48 - Part II
I arrived at the hospital about 10 minutes before they took R down for surgery. The nurse told me that she noticed stool coming from the middle of his incision around 3:00 in the morning - a clear sign of a perforation. Over the next few hours, staff prepared to take him down to fix the perforation. They eventually brought him down to the operating room around 6:45 am.
Around 8:00 this morning, the surgeon came out and told us that they had changed his central line, but did not go through with the surgery. She felt that there was a greater risk for causing more damage to his fragile bowel than the benefit of trying to fix the perforation. She said a surgical procedure could produce a lot more perforations in the bowel, causing it to almost crumble. She said at this point, we are going to let the body try to heal itself. We are told this could take weeks or months to happen. They will continue to watch him closely and, if necessary, have the surgery.
Keep in mind that the surgeon is one of the few in the world that performs these types of procedures. While R is in a very fragile state right now, I am reminded that now he really is in the hands of the Lord. My prayer focus for the next few days will be this...
Lord, let Your will be done in his life. He truly is in Your hands. Whether You take him home or heal him, it is my desire for You to get the glory in all of this. I am your vessel to be used as you see fit. Whatever the outcome, it will be well my soul.
Blessings!
Around 8:00 this morning, the surgeon came out and told us that they had changed his central line, but did not go through with the surgery. She felt that there was a greater risk for causing more damage to his fragile bowel than the benefit of trying to fix the perforation. She said a surgical procedure could produce a lot more perforations in the bowel, causing it to almost crumble. She said at this point, we are going to let the body try to heal itself. We are told this could take weeks or months to happen. They will continue to watch him closely and, if necessary, have the surgery.
Keep in mind that the surgeon is one of the few in the world that performs these types of procedures. While R is in a very fragile state right now, I am reminded that now he really is in the hands of the Lord. My prayer focus for the next few days will be this...
Lord, let Your will be done in his life. He truly is in Your hands. Whether You take him home or heal him, it is my desire for You to get the glory in all of this. I am your vessel to be used as you see fit. Whatever the outcome, it will be well my soul.
Blessings!
Day 48
We received a call around 5:00 am Monday morning that R had a perforation in his bowel and he is going in this morning for emergency surgery.
On Sunday, Jen & I spent a few hours with him and he did not seem to be his normal self. We had a feeling that something was not right. While I am anxious about another surgery, I am thankful that the problem has been found and hopefully can be corrected.
This has been a long journey - for R, for us and for you. Thank you for your faithfulness in checking the blog for updates on his progress. We heard a good word yesterday on prayer and perseverance. Are we going to pray everyday for R even though we don't know the outcome or how long the journey will last? Thank you for your faithful prayers. If you don't do so already, I would encourage you to take some time during your prayer time to listen to the Lord.
Blessings!
On Sunday, Jen & I spent a few hours with him and he did not seem to be his normal self. We had a feeling that something was not right. While I am anxious about another surgery, I am thankful that the problem has been found and hopefully can be corrected.
This has been a long journey - for R, for us and for you. Thank you for your faithfulness in checking the blog for updates on his progress. We heard a good word yesterday on prayer and perseverance. Are we going to pray everyday for R even though we don't know the outcome or how long the journey will last? Thank you for your faithful prayers. If you don't do so already, I would encourage you to take some time during your prayer time to listen to the Lord.
Blessings!
Sunday, July 20, 2008
Day 47 - Part I
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.
Thank you for praying.
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.
Monday, July 7, 2008
Day 34
R looks so wonderful today. All his vitals are looking great. His gas scores are so good that they are taking them once every 8 hours. It used to be every two. While I was there today, he opened his eyes, moved his arms and legs, and tried to pull at his lines with his fingers! This is all so exciting to us. We have not seen him awake and moving around since we handed him off to the nurse for his transplant surgery on June 2. We thank God for touching his body!!
R continues to be on the ventilator and dialysis. They are starting to wean some of his pain medicines. He is also being weaned from his sedatives. This is allowing him to wake up for a few minutes at a time.
The doctor's told Tim this morning that the piece of intestine that they removed on Saturday during surgery will be examined by the lab to see if R's body is rejecting it. We pray for the precious organs to work and work miraculously well. Also, R's kidneys need to start working. They probably will not take him off the ventilator until his kidneys show signs that they are starting again. Pray for him to pee! :)
They are also starting the process of clamping his tubes to his stomach in hopes that his stomach will tolerate having fluids in it. This is the first step towards feedings. We pray that he tolerates this process well and can begin receiving feedings soon!
We continue to be amazed at God's precious little boy. We continue to stand amazed of our Sovereign God. This has been and still is a difficult journey. There are times of sorrow and set backs and times of healing and rejoicing. However, R is worth every moment of it. I am so excited about the past two days. R is looking like himself again, and he is doing some of the same movements that he did prior to the transplant. We love him so much. Thank you for loving him with us. I pray that your time talking with the Lord on R's behalf has blessed you and your relationship with your Father God. God bless you.
R continues to be on the ventilator and dialysis. They are starting to wean some of his pain medicines. He is also being weaned from his sedatives. This is allowing him to wake up for a few minutes at a time.
The doctor's told Tim this morning that the piece of intestine that they removed on Saturday during surgery will be examined by the lab to see if R's body is rejecting it. We pray for the precious organs to work and work miraculously well. Also, R's kidneys need to start working. They probably will not take him off the ventilator until his kidneys show signs that they are starting again. Pray for him to pee! :)
They are also starting the process of clamping his tubes to his stomach in hopes that his stomach will tolerate having fluids in it. This is the first step towards feedings. We pray that he tolerates this process well and can begin receiving feedings soon!
We continue to be amazed at God's precious little boy. We continue to stand amazed of our Sovereign God. This has been and still is a difficult journey. There are times of sorrow and set backs and times of healing and rejoicing. However, R is worth every moment of it. I am so excited about the past two days. R is looking like himself again, and he is doing some of the same movements that he did prior to the transplant. We love him so much. Thank you for loving him with us. I pray that your time talking with the Lord on R's behalf has blessed you and your relationship with your Father God. God bless you.
Sunday, July 6, 2008
Day 33
After a very busy last few days, it was a relief for everyone to have a quiet day. R was switched to the conventional ventilator today. As of this evening, he continues to do well with relatively low settings. He has been on two medications to make sure his blood pressure stays up. One of those medications has been cut by half throughout the day and his pressures have done well.
The primary goal for today was rest. That will continue through the night. I will be curious to see what the doctors will order after rounds tomorrow.
During her visit this afternoon, Jen was there when R woke up. She was excited to be able to talk to him for a few minutes and let him hold her finger. He still is medicated quite a bit, but it was good to see him open his eyes and move his arms around a bit.
Thank you for your continued prayers. We will be praying for his kidneys to begin to work and that he can be weaned from the ventilator.
The primary goal for today was rest. That will continue through the night. I will be curious to see what the doctors will order after rounds tomorrow.
During her visit this afternoon, Jen was there when R woke up. She was excited to be able to talk to him for a few minutes and let him hold her finger. He still is medicated quite a bit, but it was good to see him open his eyes and move his arms around a bit.
Thank you for your continued prayers. We will be praying for his kidneys to begin to work and that he can be weaned from the ventilator.
Saturday, July 5, 2008
Day 32
I received a call at 8:40 this morning from R's nurse. She told me that they were sending him to the OR for surgery. I arrived in his room at 9:00 am. He had not left yet. The nurse showed me quite a bit of fluid that had leaked out of his gut and run down his side and even on to the floor. There was a perforation that caused the fluid to mass in his gut. Eventually, the pressure became so great that it forced it's way out. He was a mess and did not look very good.
A few hours later, the surgeon told us he was able to repair two large perforations in the bowel. He also removed a segment of the bowel because it did not look healthy. After a washing, they sewed him up and back up to the room he went. His vitals were stable throughout the surgery. The doctor said he is hoping that this will address some of the up and down issues R has been having the past few days.
As of this evening, R is stable. They are checking his blood gas levels on a regular basis and are weaning him on the vent and trying to pull as much fluid as they can out of him (a lot had been given to him during surgery). The goal for the remainder of the weekend is rest.
Thank you for your continued prayers.
A few hours later, the surgeon told us he was able to repair two large perforations in the bowel. He also removed a segment of the bowel because it did not look healthy. After a washing, they sewed him up and back up to the room he went. His vitals were stable throughout the surgery. The doctor said he is hoping that this will address some of the up and down issues R has been having the past few days.
As of this evening, R is stable. They are checking his blood gas levels on a regular basis and are weaning him on the vent and trying to pull as much fluid as they can out of him (a lot had been given to him during surgery). The goal for the remainder of the weekend is rest.
Thank you for your continued prayers.
Friday, July 4, 2008
Day 31
In light of yesterday's events, the goal for today was rest and peace and that is just what happened. The doctors this morning decided to switch R from the conventional ventilator to the oscillating ventilator. Not necessarily a step backward, according to the doctor, but a step sideways. R had not been able to blow off as much CO2 as he needed to, so the doctor decided to make the switch. The oscillating vent should be able to assist his little body in getting back to where he was a few days back. In addition to the vent change, they changed the medication they had been giving him to keep his pressure up. In doing so, they hope to get out of this "cycle" that R seems to be in with his fluids and his pressure.
As of this evening, everything is stable and he is resting comfortably. We are hoping for a quiet weekend with minor adjustments to the oscillator. If all goes well, they may try to switch him back to the conventional ventilator on Monday.
In light of all of the events from yesterday, I did not share something on yesterday's post. When you see R, it is easy to get caught up with all of the machines around him or the monitor that displays his vitals. Even when you look at him, you see his surgical site, ostomy site, drainage tube from his belly, IV lines going in his chest and leg and more. It is easy to get lost and forget about him as a baby boy. Prior to all of the chaos yesterday, Jen & I were bedside, the lights were off and it was quiet. We looked down and saw a single tear coming from his eye.
Thank you for praying for R.
As of this evening, everything is stable and he is resting comfortably. We are hoping for a quiet weekend with minor adjustments to the oscillator. If all goes well, they may try to switch him back to the conventional ventilator on Monday.
In light of all of the events from yesterday, I did not share something on yesterday's post. When you see R, it is easy to get caught up with all of the machines around him or the monitor that displays his vitals. Even when you look at him, you see his surgical site, ostomy site, drainage tube from his belly, IV lines going in his chest and leg and more. It is easy to get lost and forget about him as a baby boy. Prior to all of the chaos yesterday, Jen & I were bedside, the lights were off and it was quiet. We looked down and saw a single tear coming from his eye.
Thank you for praying for R.
Thursday, July 3, 2008
Day 30
At the end of rounds today, the doctor said she was pleased with the progress R was making. And then things went haywire...
The only concern the doctors had was with a high white blood cell count. They suspected something was going on internally, and opted to send him down for a CT scan. Jen & I decided to stay through the CT scan so we knew the outcome. As a part of preparing for the scan, the nurse administered a contrast - a fluid designed to go into his gut to help give better pictures. Administering the contrast took about an hour. With about 30 minutes left, Jen & I decided to get a quick bite to eat. On the way back from lunch, we were passed by a nurse practitioner we knew running down the hall. Thinking it was a bit odd, we rounded the corner by R's room to hear alarms going off and an entire team of people standing around his bed working feverishly. I cannot tell you what a blow that was.
We took a quick peak in the room at him. He was blue. We could hear them speaking out his oxygen saturation levels - it had dropped below 40%. It should be at 100%. Soon more people came around the corner to help. I can't tell you how many people were inside and outside of the room working on him and providing support. If I actually took the time to think about it, I would have to say it was an amazing sight. Again, I can't say enough about the team of people that care for him. Within a few minutes, they had brought his oxygen saturation level back up to a decent level and they made a quick decision to get him to the OR to see what was going on.
Jen and I were a bit shell shocked. The staff were good to give us an explanation of what was going on, but they really did not know why he crashed like he did. We were just thankful that he made it.
The surgery did not take long. They call it a "wash out". He is opened up and they literally wash out his insides to make sure there is no leaking, no perforations or anything out of the norm. While they did not find any blatant problems like they did on Sunday night, they were able to relieve a great deal of pressure internally. The nurse explained to us that it might have been compartment syndrome - a situation where there is a dangerous amount of pressure internally. Needless to say, we were relieved that he made it and that he appeared to be much more stable than he was a few hours ago.
Prior to getting him settled, the doctor ordered a bronchoscopy. They wanted to take a look in his lungs and give them a "wash out" as well. The wash out can be done through the device inserted through his breathing tube. The danger is that when inserting the saline, oxygen levels can drop dangerously low. In some cases, the patient crashes and they have to administer CPR.
As they prepared for the bronchoscopy, a crash cart was brought outside the room and "code" procedures were put on the counter as a precautionary measure. By this time, I think Jen & I were both ready to ask for a valium prescription and call it a day. Jen & I actually got to watch the bronchoscopy and see R's little lungs working. It was amazing to see the camera go through the breathing tube and into his lungs. We even saw where the lungs branch into each lobe. The doctor flushed some saline solution into his lungs and then quickly sucked it all up. This was done a few times. Each time, R's oxygen levels dropped, but he quickly recovered each time. Whew!
Words cannot express all that happened today. We almost lost him. Today was a reminder of just how sick and fragile he is. We will chose to believe that today is one more day in what will be an amazing testimony.
Prior to all of the days events, a mom of another transplant patient on the floor was beaming. She had just taken her precious little one year old out on a walk - for the third time ever. As of today, R has been alive for 402 days. He has been in the hospital for about all but 2 weeks or so. Jen & I can't wait until we can take him for a walk.
The only concern the doctors had was with a high white blood cell count. They suspected something was going on internally, and opted to send him down for a CT scan. Jen & I decided to stay through the CT scan so we knew the outcome. As a part of preparing for the scan, the nurse administered a contrast - a fluid designed to go into his gut to help give better pictures. Administering the contrast took about an hour. With about 30 minutes left, Jen & I decided to get a quick bite to eat. On the way back from lunch, we were passed by a nurse practitioner we knew running down the hall. Thinking it was a bit odd, we rounded the corner by R's room to hear alarms going off and an entire team of people standing around his bed working feverishly. I cannot tell you what a blow that was.
We took a quick peak in the room at him. He was blue. We could hear them speaking out his oxygen saturation levels - it had dropped below 40%. It should be at 100%. Soon more people came around the corner to help. I can't tell you how many people were inside and outside of the room working on him and providing support. If I actually took the time to think about it, I would have to say it was an amazing sight. Again, I can't say enough about the team of people that care for him. Within a few minutes, they had brought his oxygen saturation level back up to a decent level and they made a quick decision to get him to the OR to see what was going on.
Jen and I were a bit shell shocked. The staff were good to give us an explanation of what was going on, but they really did not know why he crashed like he did. We were just thankful that he made it.
The surgery did not take long. They call it a "wash out". He is opened up and they literally wash out his insides to make sure there is no leaking, no perforations or anything out of the norm. While they did not find any blatant problems like they did on Sunday night, they were able to relieve a great deal of pressure internally. The nurse explained to us that it might have been compartment syndrome - a situation where there is a dangerous amount of pressure internally. Needless to say, we were relieved that he made it and that he appeared to be much more stable than he was a few hours ago.
Prior to getting him settled, the doctor ordered a bronchoscopy. They wanted to take a look in his lungs and give them a "wash out" as well. The wash out can be done through the device inserted through his breathing tube. The danger is that when inserting the saline, oxygen levels can drop dangerously low. In some cases, the patient crashes and they have to administer CPR.
As they prepared for the bronchoscopy, a crash cart was brought outside the room and "code" procedures were put on the counter as a precautionary measure. By this time, I think Jen & I were both ready to ask for a valium prescription and call it a day. Jen & I actually got to watch the bronchoscopy and see R's little lungs working. It was amazing to see the camera go through the breathing tube and into his lungs. We even saw where the lungs branch into each lobe. The doctor flushed some saline solution into his lungs and then quickly sucked it all up. This was done a few times. Each time, R's oxygen levels dropped, but he quickly recovered each time. Whew!
Words cannot express all that happened today. We almost lost him. Today was a reminder of just how sick and fragile he is. We will chose to believe that today is one more day in what will be an amazing testimony.
Prior to all of the days events, a mom of another transplant patient on the floor was beaming. She had just taken her precious little one year old out on a walk - for the third time ever. As of today, R has been alive for 402 days. He has been in the hospital for about all but 2 weeks or so. Jen & I can't wait until we can take him for a walk.
Wednesday, July 2, 2008
Day 29
R continues to do well with his recovery. Here is the latest news on a number of fronts...
He continues to do well with his new ventilator. The settings on the vent will change over the course of the day. Lately, they seem to be making changes in a positive direction. This would indicate his lungs are getting stronger and he is able to breathe more on his own without assistance from the vent. There are plans to take his chest tube out today - another good sign.
As of late Tuesday evening, R was taken off of the IV medication for his heart (amiodarone) and moved to an oral dose. So far so good. If you recall, he did not tolerate this well the last time it was tried. This would be a focus of prayer for the next 24 hours.
When Jen & I went in for rounds this morning, R was not on dialysis. My excitement was short lived as he was scheduled to go back on it today. His kidneys are not working. The doctors say that they will begin working when they are ready. Perhaps they will begin working as he gets stronger and further along in his recovery. Again, another prayer emphasis for the next few days.
R's surgical site still had some oozing (medical term) blood today. The doctor ordered some platelets, thinking that should solve the problem.
R is now about 36 (or so) hours off of the paralytic drug. As I mentioned yesterday, he is more aware of his surroundings and responds to stimulus. We were told not to make too much noise today so he could get some rest. Jen and the nurse were able to give R a bath in his bed today. His blood pressure would climb as they moved him around - a sign that he is responding to what is going on. Because of all that he has gone through recently, we fully understand the importance of R getting all of the rest he can get.
Thank you for your continued prayers!
He continues to do well with his new ventilator. The settings on the vent will change over the course of the day. Lately, they seem to be making changes in a positive direction. This would indicate his lungs are getting stronger and he is able to breathe more on his own without assistance from the vent. There are plans to take his chest tube out today - another good sign.
As of late Tuesday evening, R was taken off of the IV medication for his heart (amiodarone) and moved to an oral dose. So far so good. If you recall, he did not tolerate this well the last time it was tried. This would be a focus of prayer for the next 24 hours.
When Jen & I went in for rounds this morning, R was not on dialysis. My excitement was short lived as he was scheduled to go back on it today. His kidneys are not working. The doctors say that they will begin working when they are ready. Perhaps they will begin working as he gets stronger and further along in his recovery. Again, another prayer emphasis for the next few days.
R's surgical site still had some oozing (medical term) blood today. The doctor ordered some platelets, thinking that should solve the problem.
R is now about 36 (or so) hours off of the paralytic drug. As I mentioned yesterday, he is more aware of his surroundings and responds to stimulus. We were told not to make too much noise today so he could get some rest. Jen and the nurse were able to give R a bath in his bed today. His blood pressure would climb as they moved him around - a sign that he is responding to what is going on. Because of all that he has gone through recently, we fully understand the importance of R getting all of the rest he can get.
Thank you for your continued prayers!
Tuesday, July 1, 2008
Day 28
Today we are four weeks post transplant. Once again, every day we have with R is a blessing.
He has made some remarkable strides the past several days and continues to do so today. Today, he continued to show improvements with his blood gas values. With each test (about every four hours), they will adjust the settings on the ventilator. He currently gets about 36% oxygen from the ventilator - room air is about 26%. From the settings on the ventilator, we can see that he is also breathing more on his own. The other big change of the day is that the doctors took him off of the paralytic drug. It may take a day or two for it to work itself out of his system, but once it does, he should be a little more alert and aware of his surroundings.
R continues to be on some strong antibiotics. We are hoping that his recent surgery will be his last and that no infection sets in. He continues to be on dialysis and amiodarone - the cardiac drug. There was no word today about changes to either of those. That's alright with us - slow and steady progress. No more emergency surgeries!
We are excited about his progress and the great news today! We are giving thanks for the progress he has made and, in faith, giving thanks for the progress he has yet to make. Thank you for praying with us.
He has made some remarkable strides the past several days and continues to do so today. Today, he continued to show improvements with his blood gas values. With each test (about every four hours), they will adjust the settings on the ventilator. He currently gets about 36% oxygen from the ventilator - room air is about 26%. From the settings on the ventilator, we can see that he is also breathing more on his own. The other big change of the day is that the doctors took him off of the paralytic drug. It may take a day or two for it to work itself out of his system, but once it does, he should be a little more alert and aware of his surroundings.
R continues to be on some strong antibiotics. We are hoping that his recent surgery will be his last and that no infection sets in. He continues to be on dialysis and amiodarone - the cardiac drug. There was no word today about changes to either of those. That's alright with us - slow and steady progress. No more emergency surgeries!
We are excited about his progress and the great news today! We are giving thanks for the progress he has made and, in faith, giving thanks for the progress he has yet to make. Thank you for praying with us.
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