Tuesday, June 30, 2009
Tuesday
Monday, June 29, 2009
Luke is Seven Weeks Old!
Hi everyone. I just can't believe that Luke is seven weeks old today! I'm so glad we've made it this far. Part of me though, is sad. Sad that I've missed 7 weeks of cuddling, holding, and feeding. Sad that I need to put away all his premie clothes, and probably most of his newborn clothes that he has never gotten to wear. Sad that his nursery has everything in it except a baby. Sad that we're 7 weeks into a hospital stay, having not been home, and there's really no end in sight yet.
We do have to count our blessings. The biggest, obviously, is that we've cleared the first surgery. He is still in the recovery period, but progressing nicely on most fronts. We're thankful that his right leg has healed completely now instead of being swollen and purple. He now has two chicken legs instead of one chicken leg and one elephant leg (or, one daddy leg and one mommy leg, if you will). His kidneys continue to improve. He is peeing so much now that they took out his Foley catheter because they haven't needed to keep track of his exact urine output. They now just weigh his whole diaper. They like for his creatinine level (measure of kidney function) to be below 1.0, 0.5 is normal. He's wavered between 0.8 and 1.1 for the past several days. We are hearing some rumors about stopping dialysis in the next few days to see how he does. Then if that goes well, they will take out the dialysis catheter and we'll be done with that. We are so happy that we're no longer waiting to see if he'll regain full kidney function again, waiting to see if we'll have to do dialysis permanently. We now know that Luke will be off dialysis at some point, we're just waiting for that day to come, and we think it will be soon.
Once Luke gets off dialysis, that will make his abdomen less full, which will give his lungs more room to expand, which will allow him to breathe better. Over the last week or two, the doctors have put him on what's called Pressure Support Trials. During these trials, Luke initiates all of his breaths, and then his ventilator gives him an extra amount of support and oxygen volume for each breath. This essentially teaches him incrementally how to breathe on his own, moving towards getting him completely off ventilator support. These trials last from 30 minutes to 1 hour multiple times a day to allow him to rest and rely more heavily on the ventilator in between trials. Once Luke is off dialysis, we're expecting for him to do better and better on these trials and get off the ventilator quickly. Luke also got his chest drainage tube out this week. This was the tube that allowed all of the blood and yucky stuff to drain out. A wound specialist is working with him to insure that the site will heal properly and reduce scarring. Luke also got his stitches out from his incision site this week. Now he has a pink line down the center of his chest instead of big ugly black stitches. His swelling has reduced significantly, though he still has a double chin. He is slowly but surely starting to look like a normal baby and not the torn apart and sewn back together baby he was three weeks ago.
Some not so good news now. The doctors confirmed yesterday that Luke has an infection. It's not surprising. His nurse told us that pretty much all babies in the hospital for as long as Luke has been get an infection at some point. Thankfully, they put him on antibiotics before the infection was confirmed, so we have a pretty good start on treating the infection. This infection has caused his belly to become quite swollen, and caused some problems with his small intestine. He stopped digesting his milk, so it was just sitting there in his intestines. He threw it all up, and they've stopped feeding him yesterday and today to give his digestive system a chance to heal. This means that the medications that they've worked so hard to switch over from IV form to oral form now have to be switched back, so we've taken a step backwards on that front as well. His swollen belly has also made it tougher for him to breathe. As with all the previous problems, everything in his system is dependent upon everything else, so it's very frustrating that lots of things go wrong when one little thing isn't working right. The doctors aren't going to be very aggressive with working with Luke to get off the ventilator until we get a handle on this infection.
Also, not so good, is that Luke's heart rate has slowly but steadily risen over the past 3-4 days. They have put him on the medication called Amioderone which is supposed to keep the electrical impulses in his heart that tell it to beat regular. The medication has been successful on that front, but it has not been successful at lowering his heart rate and maintaining that lower heart rate. It's lowest point since he started this arrhythmia problem was in the high 160s. Today he's in the high 180s and low 190s. The doctors tell us that Luke's blood system is tolerating this fast heart rate very well. They expect that his heart will eventually heal over a period of months and the heart rate will slow down. They are giving him another medication called Esmelol to help this along, though it hasn't seemed to have much effect so far.
So we've had some good and some bad this week. This road we're on has smoothed out quite a bit, what's hard right now is just the length of the road. Most difficult for me I think are the nights. During pregnancy, the nighttime was when I would feel him kick the most. It was the time when I felt the most aware and the closest to him. Now the nights are when we're the farthest away from him, and I feel so bereft and lonely that it's hard to fall asleep. It's difficult to go in his room to put something away because it's just an strong reminder that he's not home. Highlight of the week though came on Saturday. We haven't gotten to hold him because he's connected with too many tubes and wires to move him out of bed. Saturday though, David and I got to take turns standing right against his bed and cradling Luke in our arms. It's was really close to holding him. Not the same, but really close.
We thank you to continue praying for us. Please pray for Luke's infection to heal quickly, and for his swollen belly to go down so he can breathe better and continue eating. Please pray that the medication will lower his heart rate, or that his heart will begin to heal on its own and his heart rate will lower. 190 is a scary number to see on that monitor. It makes my heart jump whenever I see it. Pray for David and I. We're extremely weary. It's very easy to get discouraged and to fall into despair. I'm not sleeping well. Thank you all for you concern, your prayers, and your words of encouragement. We love you, and hope that God blesses you as he has blessed us.
Rachael & David
We do have to count our blessings. The biggest, obviously, is that we've cleared the first surgery. He is still in the recovery period, but progressing nicely on most fronts. We're thankful that his right leg has healed completely now instead of being swollen and purple. He now has two chicken legs instead of one chicken leg and one elephant leg (or, one daddy leg and one mommy leg, if you will). His kidneys continue to improve. He is peeing so much now that they took out his Foley catheter because they haven't needed to keep track of his exact urine output. They now just weigh his whole diaper. They like for his creatinine level (measure of kidney function) to be below 1.0, 0.5 is normal. He's wavered between 0.8 and 1.1 for the past several days. We are hearing some rumors about stopping dialysis in the next few days to see how he does. Then if that goes well, they will take out the dialysis catheter and we'll be done with that. We are so happy that we're no longer waiting to see if he'll regain full kidney function again, waiting to see if we'll have to do dialysis permanently. We now know that Luke will be off dialysis at some point, we're just waiting for that day to come, and we think it will be soon.
Once Luke gets off dialysis, that will make his abdomen less full, which will give his lungs more room to expand, which will allow him to breathe better. Over the last week or two, the doctors have put him on what's called Pressure Support Trials. During these trials, Luke initiates all of his breaths, and then his ventilator gives him an extra amount of support and oxygen volume for each breath. This essentially teaches him incrementally how to breathe on his own, moving towards getting him completely off ventilator support. These trials last from 30 minutes to 1 hour multiple times a day to allow him to rest and rely more heavily on the ventilator in between trials. Once Luke is off dialysis, we're expecting for him to do better and better on these trials and get off the ventilator quickly. Luke also got his chest drainage tube out this week. This was the tube that allowed all of the blood and yucky stuff to drain out. A wound specialist is working with him to insure that the site will heal properly and reduce scarring. Luke also got his stitches out from his incision site this week. Now he has a pink line down the center of his chest instead of big ugly black stitches. His swelling has reduced significantly, though he still has a double chin. He is slowly but surely starting to look like a normal baby and not the torn apart and sewn back together baby he was three weeks ago.
Some not so good news now. The doctors confirmed yesterday that Luke has an infection. It's not surprising. His nurse told us that pretty much all babies in the hospital for as long as Luke has been get an infection at some point. Thankfully, they put him on antibiotics before the infection was confirmed, so we have a pretty good start on treating the infection. This infection has caused his belly to become quite swollen, and caused some problems with his small intestine. He stopped digesting his milk, so it was just sitting there in his intestines. He threw it all up, and they've stopped feeding him yesterday and today to give his digestive system a chance to heal. This means that the medications that they've worked so hard to switch over from IV form to oral form now have to be switched back, so we've taken a step backwards on that front as well. His swollen belly has also made it tougher for him to breathe. As with all the previous problems, everything in his system is dependent upon everything else, so it's very frustrating that lots of things go wrong when one little thing isn't working right. The doctors aren't going to be very aggressive with working with Luke to get off the ventilator until we get a handle on this infection.
Also, not so good, is that Luke's heart rate has slowly but steadily risen over the past 3-4 days. They have put him on the medication called Amioderone which is supposed to keep the electrical impulses in his heart that tell it to beat regular. The medication has been successful on that front, but it has not been successful at lowering his heart rate and maintaining that lower heart rate. It's lowest point since he started this arrhythmia problem was in the high 160s. Today he's in the high 180s and low 190s. The doctors tell us that Luke's blood system is tolerating this fast heart rate very well. They expect that his heart will eventually heal over a period of months and the heart rate will slow down. They are giving him another medication called Esmelol to help this along, though it hasn't seemed to have much effect so far.
So we've had some good and some bad this week. This road we're on has smoothed out quite a bit, what's hard right now is just the length of the road. Most difficult for me I think are the nights. During pregnancy, the nighttime was when I would feel him kick the most. It was the time when I felt the most aware and the closest to him. Now the nights are when we're the farthest away from him, and I feel so bereft and lonely that it's hard to fall asleep. It's difficult to go in his room to put something away because it's just an strong reminder that he's not home. Highlight of the week though came on Saturday. We haven't gotten to hold him because he's connected with too many tubes and wires to move him out of bed. Saturday though, David and I got to take turns standing right against his bed and cradling Luke in our arms. It's was really close to holding him. Not the same, but really close.
We thank you to continue praying for us. Please pray for Luke's infection to heal quickly, and for his swollen belly to go down so he can breathe better and continue eating. Please pray that the medication will lower his heart rate, or that his heart will begin to heal on its own and his heart rate will lower. 190 is a scary number to see on that monitor. It makes my heart jump whenever I see it. Pray for David and I. We're extremely weary. It's very easy to get discouraged and to fall into despair. I'm not sleeping well. Thank you all for you concern, your prayers, and your words of encouragement. We love you, and hope that God blesses you as he has blessed us.
Rachael & David
Friday, June 26, 2009
Friday
Luke's heart rate is in the mid-high 160s today, it appears his medication cocktail might be working. The docs are afraid though that he might have an infection because his belly is swollen and his skin is blotchy. They've done cultures at all his tube sites to check for infection. We'll know in 24-48 hours. And Luke's taken a step backwards from getting off dialysis. His creatanin level moved from 0.9 to 1.1.
Wednesday, June 24, 2009
Wednesday
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Monday, June 22, 2009
Luke is Six Weeks Old!
We've made it six weeks. We've had some adventures with heart rate this week.
It was about Wednesday or Thrusday, I don't remember exactly (all the days run together!) when Luke's heart rate went suddenly from the 130s to the 170s. The change took place in less than a minute, and we are both glad that David was standing close by with his eyes on the monitors and noticed this change. After a lot of humming and hawing, the doctors, including his cardiologist, Dr. Kao, decided to put him on a drug called amioderone. She told us that Amioderone is a slow acting drug and would take at least 4 hours to start working. We had to leave then for shift change, and when we came back, the night Doc, Dr. Stromberg had taken him off the drug because he thought it was causing Luke's heart to "drop" or "skip" beats and jump all over-- one moment in the 170s, then next in the 110s, the next somewhere in the 130's, etc.
The next morning Dr. Kao and the day doctor, Dr. Meyer, did some experiments with a different drug and his pacemaker and ruled out a certain type of arrhythmia. They have been talking to a specialist from Austin who is a heart rate specialist named Dr. Fenrich. Dr. Fenrich has seen all of Luke's EKGs from this week. Over the past week the doctors have been trying a few different drugs and different things. The problem with the drugs they have been using have been that they will slow his heart rate down, but then his heart rate will begin to drop beats or jump all around, and his blood pressure will also drop, which is bad for his whole system.
As we left yesterday evening, we were distraught because we felt that his doctors have basically hit a wall. The treatments they have been using haven't been very effective. They had warned us that while his fast heart rate is not putting him in immediate danger (as long as his heart rate is steady, the rest of his system is working well, though fast), they aren't sure how long Luke's heart can beat that fast before tiring out. So the doctors had no solution to offer us yesterday to slow his heart rate down and keep it regular. We didn't know if we were facing Luke going into arrest again, or heart failure, or what. With no answers, we were pretty distraught.
This morning I walked into his room and nearly panicked to see four nurses, an EKG tech, and Dr. Stromberg standing around Luke's bed. It turned out that Luke's atrial heart rate (the beat rate for the top half of Luke's heart) went to about 240. Dr. Stromberg explained to me that only about 2/3 of these beats were "getting through" to the bottom half of his heart, so his true HR was only about 170. Still fast, but that helped me not to panic. Basically the top half of his heart was not talking to the bottom half, his blood pressure was dropping, and it was overall not good for his system. Dr. S used Luke's pacemaker to outpace his heart and basically hit the reset button on the node that was sending the bad impulses to shoot his heart rate up. Dr. S was able to use the pacemaker to get Luke's heart on a regular rhythm and get both halves of t he heart to communicate well together again. Luke's heart settled into a regular "sinus" rhythm of 190's. He explained to me that this type of thing is common in babies who have had Luke's surgery. Since they reduced the size of his atrium during surgery, he has some scar tissue on his right atrium. Basically one of the nodes that send electrical signals to the bottom half of the heart is right next to some scar tissue. The node would send an impulse, but the signal would go round and round the scar tissue and work itself up into a very fast rhythm. Kind of like a broken record or a skipping CD. I know that's really confusing, and I'm not sure that I understand it well. The good thing is that Dr. Stromberg understands what is going on, and has a plan to fix it.
After talking with Dr. Fenrich, Dr. Stromberg decided that Amioderone is again the correct drug to give Luke. Dr. S explained to me that the Amioderone would keep the broken record thing from reoccuring. He said that in the process, it should slow Luke's heart rate down a little maybe 160s or 170s, though the full effects of the drug will not be seen for 2-3 days because it is so slow acting.
Dr. Fenrich will come on Thursday and visit Luke. In the meantime, we think they'll keep him on Amioderone. Dr. Stromberg says that Luke's heart rate being in the 190s is not concerning to him at all. He believes that the problem is temporary, "post-op", and that while we may need to have Luke on Amioderone for a few months after we take him home, he won't need it indefinitely. He believes that this problem with the arrhythmia will work itself out in a little while. This is a relief to hear, but David and I are still nervous about the problem until we can see the effects of the drug start working and we go a couple of days without any crazy episodes.
Meanwhile, they are getting more aggressive with Luke's dialasis to try and get more fluid/swelling/adema off of Luke's body. This will enable Luke's lungs to expand more, allowing him to breathe more effectively, and hopefully in a few days get him of the ventilator. His night doctor last night had his foley catheter (for his urine) reinserted to keep better track of his urine output. His kidneys continue to improve a little each day based on the chemistry levels shown by his blood work. We don't have an idea when they might take Luke off of dialysis. Luke's leg looks almost back to normal, which we are really happy about. We haven't had any more seizures or any other reason to worry abou this brain any further. Luke's gotten up to full feeds - he gets 18 mL of breatmilk every hour continuously. We've begun something called pressure support trials with his ventilator. This means that for one hour, every four hours, the ventilator stops giving Luke breaths. Luke initiates every breath on his own, and the ventilotr gives him a little extra volume of Oxygen and a little extra pressure. In doing this we are teaching Luke to breathe on his own. So far Luke has done very well with most of his pressure trials. We haven't done one this morning because of his heart rate episode, but I believe they'll resume this afternoon.
One final thing, since Luke's ventilator and feeding tubes are now through his nose, he has room in his mouth to take a pacifier. Yesterday Luke went to town on his passifier two seperate times for about an hour each time. David and I are encouraged, thinking that if he can suck for that long, he should be able to take a full feeding. If we can get his heart under control, maybe we won't be in NICU for too long teaching Luke how to eat.
I think that's all the news. Thanks for bearing with me through all of this confusing information.
Thank you for your continued prayers. Please pray for Luke's arrhythmia to work itself out with the help of this medication. Please pray that the doctors gain full understanding and insight into this problem so they know the best way to treat it. Pray that we get to hold him soon.
We love you.
Blessings,
Rachael & David
It was about Wednesday or Thrusday, I don't remember exactly (all the days run together!) when Luke's heart rate went suddenly from the 130s to the 170s. The change took place in less than a minute, and we are both glad that David was standing close by with his eyes on the monitors and noticed this change. After a lot of humming and hawing, the doctors, including his cardiologist, Dr. Kao, decided to put him on a drug called amioderone. She told us that Amioderone is a slow acting drug and would take at least 4 hours to start working. We had to leave then for shift change, and when we came back, the night Doc, Dr. Stromberg had taken him off the drug because he thought it was causing Luke's heart to "drop" or "skip" beats and jump all over-- one moment in the 170s, then next in the 110s, the next somewhere in the 130's, etc.
The next morning Dr. Kao and the day doctor, Dr. Meyer, did some experiments with a different drug and his pacemaker and ruled out a certain type of arrhythmia. They have been talking to a specialist from Austin who is a heart rate specialist named Dr. Fenrich. Dr. Fenrich has seen all of Luke's EKGs from this week. Over the past week the doctors have been trying a few different drugs and different things. The problem with the drugs they have been using have been that they will slow his heart rate down, but then his heart rate will begin to drop beats or jump all around, and his blood pressure will also drop, which is bad for his whole system.
As we left yesterday evening, we were distraught because we felt that his doctors have basically hit a wall. The treatments they have been using haven't been very effective. They had warned us that while his fast heart rate is not putting him in immediate danger (as long as his heart rate is steady, the rest of his system is working well, though fast), they aren't sure how long Luke's heart can beat that fast before tiring out. So the doctors had no solution to offer us yesterday to slow his heart rate down and keep it regular. We didn't know if we were facing Luke going into arrest again, or heart failure, or what. With no answers, we were pretty distraught.
This morning I walked into his room and nearly panicked to see four nurses, an EKG tech, and Dr. Stromberg standing around Luke's bed. It turned out that Luke's atrial heart rate (the beat rate for the top half of Luke's heart) went to about 240. Dr. Stromberg explained to me that only about 2/3 of these beats were "getting through" to the bottom half of his heart, so his true HR was only about 170. Still fast, but that helped me not to panic. Basically the top half of his heart was not talking to the bottom half, his blood pressure was dropping, and it was overall not good for his system. Dr. S used Luke's pacemaker to outpace his heart and basically hit the reset button on the node that was sending the bad impulses to shoot his heart rate up. Dr. S was able to use the pacemaker to get Luke's heart on a regular rhythm and get both halves of t he heart to communicate well together again. Luke's heart settled into a regular "sinus" rhythm of 190's. He explained to me that this type of thing is common in babies who have had Luke's surgery. Since they reduced the size of his atrium during surgery, he has some scar tissue on his right atrium. Basically one of the nodes that send electrical signals to the bottom half of the heart is right next to some scar tissue. The node would send an impulse, but the signal would go round and round the scar tissue and work itself up into a very fast rhythm. Kind of like a broken record or a skipping CD. I know that's really confusing, and I'm not sure that I understand it well. The good thing is that Dr. Stromberg understands what is going on, and has a plan to fix it.
After talking with Dr. Fenrich, Dr. Stromberg decided that Amioderone is again the correct drug to give Luke. Dr. S explained to me that the Amioderone would keep the broken record thing from reoccuring. He said that in the process, it should slow Luke's heart rate down a little maybe 160s or 170s, though the full effects of the drug will not be seen for 2-3 days because it is so slow acting.
Dr. Fenrich will come on Thursday and visit Luke. In the meantime, we think they'll keep him on Amioderone. Dr. Stromberg says that Luke's heart rate being in the 190s is not concerning to him at all. He believes that the problem is temporary, "post-op", and that while we may need to have Luke on Amioderone for a few months after we take him home, he won't need it indefinitely. He believes that this problem with the arrhythmia will work itself out in a little while. This is a relief to hear, but David and I are still nervous about the problem until we can see the effects of the drug start working and we go a couple of days without any crazy episodes.
Meanwhile, they are getting more aggressive with Luke's dialasis to try and get more fluid/swelling/adema off of Luke's body. This will enable Luke's lungs to expand more, allowing him to breathe more effectively, and hopefully in a few days get him of the ventilator. His night doctor last night had his foley catheter (for his urine) reinserted to keep better track of his urine output. His kidneys continue to improve a little each day based on the chemistry levels shown by his blood work. We don't have an idea when they might take Luke off of dialysis. Luke's leg looks almost back to normal, which we are really happy about. We haven't had any more seizures or any other reason to worry abou this brain any further. Luke's gotten up to full feeds - he gets 18 mL of breatmilk every hour continuously. We've begun something called pressure support trials with his ventilator. This means that for one hour, every four hours, the ventilator stops giving Luke breaths. Luke initiates every breath on his own, and the ventilotr gives him a little extra volume of Oxygen and a little extra pressure. In doing this we are teaching Luke to breathe on his own. So far Luke has done very well with most of his pressure trials. We haven't done one this morning because of his heart rate episode, but I believe they'll resume this afternoon.
One final thing, since Luke's ventilator and feeding tubes are now through his nose, he has room in his mouth to take a pacifier. Yesterday Luke went to town on his passifier two seperate times for about an hour each time. David and I are encouraged, thinking that if he can suck for that long, he should be able to take a full feeding. If we can get his heart under control, maybe we won't be in NICU for too long teaching Luke how to eat.
I think that's all the news. Thanks for bearing with me through all of this confusing information.
Thank you for your continued prayers. Please pray for Luke's arrhythmia to work itself out with the help of this medication. Please pray that the doctors gain full understanding and insight into this problem so they know the best way to treat it. Pray that we get to hold him soon.
We love you.
Blessings,
Rachael & David
Sunday, June 21, 2009
Sunday
Doctors still can't get a handle on Luke's arrhythmia. Heart rate's up to the 190's. Everything else is going pretty well. Luke might be able to get off the ventilator soon and get his chest tube and right atrium lines out within the next couple of days. Please pray for Luke's doctors to have wisdom and insight in treating his arrhythmia. Dave and I are getting pretty antsy with this problem.
Saturday, June 20, 2009
Thursday
Originally posted June 18, 2009
Fast Heart rate is being treated with medication (this is actually a medication we can give at home). Docs say he'll need it indefinitely. They say it's because of having to reduce the size of his atrium and the top half of his heart isn't communicating well with the bottom half. We had to bring in the heart beat specialist from Austin to make this diagnosis. HR should be slowing down in the next 24-48 hours.
Fast Heart rate is being treated with medication (this is actually a medication we can give at home). Docs say he'll need it indefinitely. They say it's because of having to reduce the size of his atrium and the top half of his heart isn't communicating well with the bottom half. We had to bring in the heart beat specialist from Austin to make this diagnosis. HR should be slowing down in the next 24-48 hours.
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