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.
Monday, July 7, 2008
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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