Madeleine continues to improve and we're hopeful that she will be released tomorrow. The pneumonia is close to being resolved and after a week's worth of tests and discussions with doctors, we've settled on the following course of action:
1) The doctors inserted a nasal "J" tube yesterday afternoon. The tube itself is exactly the same as her previous feeding tube but the major difference is that this tube extends through her stomach into her small intestines. We're going to feed Madeleine on a continuous feeding schedule for 16 hours every day and then will bottle feed her with thickened formual up to three times/day. By taking this approach, we hope to eliminate any reflux by bypassing the stomach and by thickening any bottle fed food, we decrease the risk of her aspirating when swallowing. By taking this approach, we hope that Madeleine will put on weight quickly and we believe that this growth will help her body deal with regular feedings once we switch back in a few months.
2) We are going home with a Pulse oximeter (more commonly referred to as a Pulsox.) The pulsox monitors blood saturation levels and is a good indicator of the relative efficiency/effectivness of one's lungs. We don't plan on keeping a monitor on Madeleine all the time-- this would be crazy as it would beep pretty much any time Madeleine moved-- but we will have it so that we can check to see how Madeleine is doing from time-to-time. Most importantly, when we are concerned with her health, Kirsten and I won't stand looking at Madeleine discussing how we think her coloring is and trying to determine if something is wrong. In short: this should help us monitor Madeleine's health and identify any potential problems early on.
Those are the major changes. We're going to work closely with Madeleiene's team of doctors and we're hoping that these changes will allow Madeleine to grow and avoid future pneumonia episodes. We're going to be home this weekend recuperating and we'll try to take pictures and post them. Take care,
Brent and Kirsten
Thursday, August 28, 2008
Tuesday, August 26, 2008
Slow Improvement
Madeleine spent the weekend in the PICU at Children's Hospital and is recovering well from her most recent bout with pneumonia. Given her progress, she was transferred Sunday night from the ICU to the general floor as she completes her recovery.
While we're very pleased with her recovery from pneumonia, we're focused on preventing future problems. There are four factors that play into Madeleine's pneumonia and past hospitalizations:
1) Pulmonary: As with all premature babies, Madeleine's lungs show some signs of prematurity making her more susceptible to infections, primarily pneumonia.
2) Cardiology: While Madeleine has had her major heart surgery, some doctors have expressed concern that her heart isn't performing at 100% and is potentially creating a fluid imbalance in her lungs. This is unlikely but until we rule it out, it is another potential reason for why she has had recurrent pneumonia.
3) GI issues: This is the most likely culprit (or the primary culprit) for the recurrent pneumonia as we believe that Madeleine's pneumonia is linked to micro-aspirations of fluid into her lungs. During Madeleine's previous stay in the hospital, the doctors conducted a swallow test and milk scan to determine if Madeleine was aspirating. The swallow test checks to see if any formula aspirates on the way down the esophagus whereas the milk scan looks to see if the food is refluxed back up from the stomach. Both tests were somewhat inconclusive as they showed potential for aspiration but didn't confirm it.
4) Down syndrome: This is the hardest factor to assess but it likely plays into Madeleine's health issues. Kids with Down syndrome usually get more than their fair share of respiratory infections and the cause isn't entirely clear. In the end, its possible that Madeleine's ability to fight infections is somewhat compromised and we just need to keep this in mind whenever she displays signs of an infection.
Taking all of these factors into account is a complicated business and we're working diligently with our team of doctors to ensure that we consider all aspects in treating and preventing future bouts with pneumonia. During Madeleine's previous two visits to the hospital, she was admitted to the respiratory/pulmonary floor but when she was transferred out of the ICU this time, she was moved to the gernal medicine floor. We were very pleased with this decision as the doctors have taken a much more wholistic approach in treating her pneumonia. To be certain, they're focused on resolving the acute pneumonia issues but they're spending a great deal of time on all of the four factors listed above and we feel much more confident in our ability to address the larger medical issues facing Madeleine in the future.
We don't have a final plan for future care but we've discused making the following changes:
1) Inserting a nasal "J" (NJ) tube. Madeleine currently has a nasal "G" (NG) tube that we use to put formula directly into her stomach. The NJ tube is the same type of tube and is also inserted through her nose but the tube extends past the stomach into the top of the small intestines. By using the NJ tube, it should ensure that Madeleine doesn't reflux and aspirate. If her main problem is aspiration caused by reflux (Kirsten and I believe this to be the case) then we would expect to see major improvement in her respirations (slower breathing and more relaxed in general). We'd also expect to see fairly aggressive weight gain and in theory as Madeleine grows, the valve that separates the stomach from the espophagus should strengthen thereby decreasing reflux in the future.
2) Thickened "PO" feeds: The doctors would still like us to do some feedings by mouth (PO) but given the concern over Madeleine aspirating formula when she swallows, we will need to thicken the formula with rice cereal. We tried this once before and Madeleine wasn't a huge fan. That being said, we didn't work at it too hard and given the importance of avoiding pneumonia, we're open to trying again.
These two changes are the major options that we are considering at this time. The doctors do have a number of other tests scheduled before we're released but these are primarily aimed at ruling out any other potential causes of aspiration and/or susceptibility for infection and we're not expecting any new findings. (We'll see how that statement is revised in the coming days.)
If all goes according to plan, we think we'll be released from the hospital on Wednesday or Thursday at the latest. I'll provide further updates in the next few days as we finalize the changes in Madeleine's care. Thanks again for everyone's support.
Brent
While we're very pleased with her recovery from pneumonia, we're focused on preventing future problems. There are four factors that play into Madeleine's pneumonia and past hospitalizations:
1) Pulmonary: As with all premature babies, Madeleine's lungs show some signs of prematurity making her more susceptible to infections, primarily pneumonia.
2) Cardiology: While Madeleine has had her major heart surgery, some doctors have expressed concern that her heart isn't performing at 100% and is potentially creating a fluid imbalance in her lungs. This is unlikely but until we rule it out, it is another potential reason for why she has had recurrent pneumonia.
3) GI issues: This is the most likely culprit (or the primary culprit) for the recurrent pneumonia as we believe that Madeleine's pneumonia is linked to micro-aspirations of fluid into her lungs. During Madeleine's previous stay in the hospital, the doctors conducted a swallow test and milk scan to determine if Madeleine was aspirating. The swallow test checks to see if any formula aspirates on the way down the esophagus whereas the milk scan looks to see if the food is refluxed back up from the stomach. Both tests were somewhat inconclusive as they showed potential for aspiration but didn't confirm it.
4) Down syndrome: This is the hardest factor to assess but it likely plays into Madeleine's health issues. Kids with Down syndrome usually get more than their fair share of respiratory infections and the cause isn't entirely clear. In the end, its possible that Madeleine's ability to fight infections is somewhat compromised and we just need to keep this in mind whenever she displays signs of an infection.
Taking all of these factors into account is a complicated business and we're working diligently with our team of doctors to ensure that we consider all aspects in treating and preventing future bouts with pneumonia. During Madeleine's previous two visits to the hospital, she was admitted to the respiratory/pulmonary floor but when she was transferred out of the ICU this time, she was moved to the gernal medicine floor. We were very pleased with this decision as the doctors have taken a much more wholistic approach in treating her pneumonia. To be certain, they're focused on resolving the acute pneumonia issues but they're spending a great deal of time on all of the four factors listed above and we feel much more confident in our ability to address the larger medical issues facing Madeleine in the future.
We don't have a final plan for future care but we've discused making the following changes:
1) Inserting a nasal "J" (NJ) tube. Madeleine currently has a nasal "G" (NG) tube that we use to put formula directly into her stomach. The NJ tube is the same type of tube and is also inserted through her nose but the tube extends past the stomach into the top of the small intestines. By using the NJ tube, it should ensure that Madeleine doesn't reflux and aspirate. If her main problem is aspiration caused by reflux (Kirsten and I believe this to be the case) then we would expect to see major improvement in her respirations (slower breathing and more relaxed in general). We'd also expect to see fairly aggressive weight gain and in theory as Madeleine grows, the valve that separates the stomach from the espophagus should strengthen thereby decreasing reflux in the future.
2) Thickened "PO" feeds: The doctors would still like us to do some feedings by mouth (PO) but given the concern over Madeleine aspirating formula when she swallows, we will need to thicken the formula with rice cereal. We tried this once before and Madeleine wasn't a huge fan. That being said, we didn't work at it too hard and given the importance of avoiding pneumonia, we're open to trying again.
These two changes are the major options that we are considering at this time. The doctors do have a number of other tests scheduled before we're released but these are primarily aimed at ruling out any other potential causes of aspiration and/or susceptibility for infection and we're not expecting any new findings. (We'll see how that statement is revised in the coming days.)
If all goes according to plan, we think we'll be released from the hospital on Wednesday or Thursday at the latest. I'll provide further updates in the next few days as we finalize the changes in Madeleine's care. Thanks again for everyone's support.
Brent
Friday, August 22, 2008
Another Bump In the Road
In my last message I admitted that Kirsten and I were probably setting ourselves for a fall from grace and unfortunately, my fears were confirmed today. Madeleine is being admitted to the hospital today with pneumonia, again. The assumption is that she refluxed and aspirated fluid into her lungs setting her up for infection. This hasn't been confirmed but that's what the doctors suspect. We went to the ER this morning as Madeleine was dependent on higher levels of oxygen and her coloring was very poor. Additionally, she refused to feed from a bottle and was very irritated all day yesterday-- suprisingly, she does not have a fever.
In any case, we don't think the infection is too bad-- probably similar to her last bout with pneumonia and our concern is more on why now. One possible explanation is that Madeleiene out grew her doses for the medicine treating her reflux. Kirsten spoke yesterday with our pediatrician and they increased the amount of Prevasid she gets on a daily basis. Its possible that this change alone will make the difference once the infection is under control. Still, we're going to meet with a GI specialist as well as a cardiologist and pulmonoligist to determine if we need to consider other alternatives to help resolve her reflux. If we don't make any major changes right now, at the very least, we hope to lay out various alternatives in the event that Madeleine continues to struggle with reflux in the future.
In any case, we're obviously disappointed and frustrated right now as we were fairly confident that we'd put the hospital in the rear view mirror for a while. We don't know how long we're going to be in the hospital but think its likely we'll be in through the weekend (getting sick on a Friday is a really bad way to start the weekend) and will probably be released early next week after all of the specialists have a had a chance to examine her and weigh in with their opinions.
That's all for now. I'll try to keep the blog posted though I'll have limited access as I'm likely going to spend the night at the hospital with Madeleine. Thanks again for everyone's support.
Brent
In any case, we don't think the infection is too bad-- probably similar to her last bout with pneumonia and our concern is more on why now. One possible explanation is that Madeleiene out grew her doses for the medicine treating her reflux. Kirsten spoke yesterday with our pediatrician and they increased the amount of Prevasid she gets on a daily basis. Its possible that this change alone will make the difference once the infection is under control. Still, we're going to meet with a GI specialist as well as a cardiologist and pulmonoligist to determine if we need to consider other alternatives to help resolve her reflux. If we don't make any major changes right now, at the very least, we hope to lay out various alternatives in the event that Madeleine continues to struggle with reflux in the future.
In any case, we're obviously disappointed and frustrated right now as we were fairly confident that we'd put the hospital in the rear view mirror for a while. We don't know how long we're going to be in the hospital but think its likely we'll be in through the weekend (getting sick on a Friday is a really bad way to start the weekend) and will probably be released early next week after all of the specialists have a had a chance to examine her and weigh in with their opinions.
That's all for now. I'll try to keep the blog posted though I'll have limited access as I'm likely going to spend the night at the hospital with Madeleine. Thanks again for everyone's support.
Brent
Tuesday, August 19, 2008
7 lbs 11.5 oz!
That's right-- Madeleine gained over 1 oz/day over the past 5 days. Yes-- we're excited and probably running the risk of basing too much on one weigh-in. Still, we're confident that the new feeding routine is working and we think Madeleine is on the fast track for gaining weight (don't we all wish this was a good thing!).
That's all for now. Enjoy the new August pictures-- we need to take more.
Brent
That's all for now. Enjoy the new August pictures-- we need to take more.
Brent
Great Weekend
Madeleine just continues to chug along. I'm really delinquent on posting pictures and will do my best to get new pictures up today/tonight. Additionally, we're hoping that home nursing comes today as we're expecting a pretty major weight gain. Madeleine weighed 7lbs 6 oz last Thursday and we're hoping that she comes close to the goal of 1 oz/day gained. If that's the case, she should weigh in around 7lbs 11oz today.
With the new feeding approach, Madeleine continues to sleep well and she's pretty much in a happy disposition most of the day (except when she gets hungry). She's smiling a lot more, she's perfected the art of sucking her thumb (we have some good pictures), and she's really improving her head control-- she can lift her entire head up when we place her on her belly. These things aren't all that impressive to most-- I know they wouldn't have meant much to me prior to becoming a dad-- but they're major developmental milestones and Kirsten and I are ecstatic with Madeleine's progress. Whenever she clears one "hurdle" we go running for the camera so that we have a record of her progress.
That's all on our end. We don't have any plans set for the weekend-- we'd love to go out to our cabin in West Virginia but we're a little leery of making any major changes with Madeleine as we're really enjoying her progress right now. I guess there is something to be said for slowing down life every once in a while. :)
Thanks again for everyone's interest and support.
Brent and Kirsten
With the new feeding approach, Madeleine continues to sleep well and she's pretty much in a happy disposition most of the day (except when she gets hungry). She's smiling a lot more, she's perfected the art of sucking her thumb (we have some good pictures), and she's really improving her head control-- she can lift her entire head up when we place her on her belly. These things aren't all that impressive to most-- I know they wouldn't have meant much to me prior to becoming a dad-- but they're major developmental milestones and Kirsten and I are ecstatic with Madeleine's progress. Whenever she clears one "hurdle" we go running for the camera so that we have a record of her progress.
That's all on our end. We don't have any plans set for the weekend-- we'd love to go out to our cabin in West Virginia but we're a little leery of making any major changes with Madeleine as we're really enjoying her progress right now. I guess there is something to be said for slowing down life every once in a while. :)
Thanks again for everyone's interest and support.
Brent and Kirsten
Thursday, August 14, 2008
Still Going Strong
Madeleine has had a really good week. The change in feeding seems to be making a huge difference as her breathing appears to be slowing down and she's also improving at bottle feeding. She actually gets hungry during the day and we've learned that hungry babies are not happy babies. On the flip side, she's still sleeping through the night once we hook her up to the pump. All in all, its just a pretty boring, straightforward week.
Madeleiene's appointments on Monday went great-- the pediatrician and surgeon are both pleased with her progress. The best sign of progress is that we don't have another doctor's appointment until August 28th. That's an eternity for Madeleine. We're hopeful that in the next two weeks, we'll see significant weight gain. At that point, we'll have a better idea of the date for her re-attachment surgery-- we're still a long ways off-- and can also start to think about possible modifications to her care. Our goal remains to be cord free (no oxygen, feeding tube, monitors, etc) by Christmas and we think this is still possible.
In any case, we have more pictures and I'll try to post sometime tonight or over the weekend. Thanks again for everyone's support.
Brent
Madeleiene's appointments on Monday went great-- the pediatrician and surgeon are both pleased with her progress. The best sign of progress is that we don't have another doctor's appointment until August 28th. That's an eternity for Madeleine. We're hopeful that in the next two weeks, we'll see significant weight gain. At that point, we'll have a better idea of the date for her re-attachment surgery-- we're still a long ways off-- and can also start to think about possible modifications to her care. Our goal remains to be cord free (no oxygen, feeding tube, monitors, etc) by Christmas and we think this is still possible.
In any case, we have more pictures and I'll try to post sometime tonight or over the weekend. Thanks again for everyone's support.
Brent
Monday, August 11, 2008
A Very Good Weekend
Sorry for not updating the blog over the weekend. Madeleine was finally released late on Friday night-- we're not sure why it took them so long on Friday. Regardless, we had a very good weekend and we feel like we're making some fairly significant progress with Madeleine. The change in feeding approach has really seemed to help reduce the amount of reflux and associated negative events that have plagued Madeleine since her release from the hospital. By reducing the amount of food that we give her at any one time, she doesn't struggle too much during the day. Additionally, since we're not making her full, she is getting hungry during the day and she's getting much better at bottle feeding-- at most feeds she's taking well over 40cc's-- over double her standard amount prior to the change. One final benefit of this new approach is that when we feed her via the pump, she gets a steady amount of food for 12 hours and she sleeps through most of this period. We do have to get up two times each night to change her and add additional food to the pump (formula can only sit out for four hours, so you have to add extra formula every four hours) but Madeleine generally sleeps right through these different events. If she does wake up, its usually only one eye and she usually has a sleepy/drowsy look that says, "I'm fat and happy right now!"
That's pretty much the update on our homefront right now. Kirsten and Madeleine have appointments today with the pediatrician and the surgeon-- just standard check-ups and we hope that we can continue to report good news. Thanks,
Brent
That's pretty much the update on our homefront right now. Kirsten and Madeleine have appointments today with the pediatrician and the surgeon-- just standard check-ups and we hope that we can continue to report good news. Thanks,
Brent
Friday, August 8, 2008
Possilbe Breakthrough
We're still awaiting final word on whether Madeleine will be released from the hospital today. She's doing find-- the doctors just wanted to discuss amongst themselves and also wanted to review some data from her monitors before releasing us. They said there is a chance that they'll ask to keep her one more night-- just for observation.
Regardless, we think that we've learned a lot about Madeleine's health issues and are hopeful that we may have figured out a breakthrough solution. Here's our thinking:
- Madeleine's largest goal is still weight gain. As she gains weight all of her other issues should resolve themselves.
- The biggest inhibitor to weight gain is Madeleine's tachypnia (fast breathing) as this burns calories. Madeleine is always tachypnic and therefore, she isn't gaining weight as effectively as possible.
- There are three potential reasons for her tachypnia: heart problems, chronic lung problems, and other factors that affect the lungs. They don't think the heart is causing any problems as the surgery correction appears to be working great. It is possible that the lungs have some prematurity problems but alone, this doesn't seem to be enough to cause her constant tachypnia. Adding further credence to this belief is that Madeleine gets medical treatment for her breathing via a nebulizer every 4-6 hours. When the treatment is administered, it is reasonable to assume that the chronic lung symptoms would be relieved for at least a short amount of time. (If you're asthmatic and you use your inhaler, it calms your breathing down-- same line of thinking applies with Madeleine.) However, Madeleine doesn't appear to get much, if any, relief from her treatments. While we can't fully rule out chronic lung problems, it is increasingly likely to suspect other factors affecting the lungs. In Madeleine's case, it is entirely possible if not probable that her reflux is causing fluid to irritate the opening to her lungs. Additionally, the doctors believe that Madeleine has "micro-aspirations" that have leached into her lungs-- the likely culprits of her current bout with pneumonia.
So-- what does this all mean? Well, it means that it is possible that if we solve her reflux problems, her tachypnia will subside and she'll likely put on weight much faster. In other words, solving the reflux is potentially the way to break out of the vicious cycle of health issues she's fighting and could puth er on a fast track for growth.
Here's the current plan for solving the reflux:
- During the day, we are going to feed her three times: at 11AM, 2PM, and 5PM. We are going to give her a bottle for feeding and will let her take as much as she can for 30 minutes. At 8PM, we are going to add up the totals from the three feeds and then substract this amount from her full day amount of 490 cc's. We'll then add this remaining amount into a bag and will hook the bag up to a pump that will slowly feed Madeleine the remaining formula over a 12 hour period. By taking this approach and maintaining her dosages of prevasid and reglan, we're hoping to minimize the frequency and incidents of reflux. This is the approach we've taken for a day in the hospital and it already appears to be helping Madeleine's breathing relax. Its still too early to draw any significant conclusions but we're pretty hopeful.
In any case, that's pretty much everything for us. I'll report back once Madeleine gets released and will let you know how she's doing with this new feeding approach. We're going to have a low key weekend at home-- hoping that by taking it slower, Madeleine can benefit as well. Kirsten and I don't do a slow life pace very well-- we're hoping it isn't necessary for too long.
Take care,
Brent
Regardless, we think that we've learned a lot about Madeleine's health issues and are hopeful that we may have figured out a breakthrough solution. Here's our thinking:
- Madeleine's largest goal is still weight gain. As she gains weight all of her other issues should resolve themselves.
- The biggest inhibitor to weight gain is Madeleine's tachypnia (fast breathing) as this burns calories. Madeleine is always tachypnic and therefore, she isn't gaining weight as effectively as possible.
- There are three potential reasons for her tachypnia: heart problems, chronic lung problems, and other factors that affect the lungs. They don't think the heart is causing any problems as the surgery correction appears to be working great. It is possible that the lungs have some prematurity problems but alone, this doesn't seem to be enough to cause her constant tachypnia. Adding further credence to this belief is that Madeleine gets medical treatment for her breathing via a nebulizer every 4-6 hours. When the treatment is administered, it is reasonable to assume that the chronic lung symptoms would be relieved for at least a short amount of time. (If you're asthmatic and you use your inhaler, it calms your breathing down-- same line of thinking applies with Madeleine.) However, Madeleine doesn't appear to get much, if any, relief from her treatments. While we can't fully rule out chronic lung problems, it is increasingly likely to suspect other factors affecting the lungs. In Madeleine's case, it is entirely possible if not probable that her reflux is causing fluid to irritate the opening to her lungs. Additionally, the doctors believe that Madeleine has "micro-aspirations" that have leached into her lungs-- the likely culprits of her current bout with pneumonia.
So-- what does this all mean? Well, it means that it is possible that if we solve her reflux problems, her tachypnia will subside and she'll likely put on weight much faster. In other words, solving the reflux is potentially the way to break out of the vicious cycle of health issues she's fighting and could puth er on a fast track for growth.
Here's the current plan for solving the reflux:
- During the day, we are going to feed her three times: at 11AM, 2PM, and 5PM. We are going to give her a bottle for feeding and will let her take as much as she can for 30 minutes. At 8PM, we are going to add up the totals from the three feeds and then substract this amount from her full day amount of 490 cc's. We'll then add this remaining amount into a bag and will hook the bag up to a pump that will slowly feed Madeleine the remaining formula over a 12 hour period. By taking this approach and maintaining her dosages of prevasid and reglan, we're hoping to minimize the frequency and incidents of reflux. This is the approach we've taken for a day in the hospital and it already appears to be helping Madeleine's breathing relax. Its still too early to draw any significant conclusions but we're pretty hopeful.
In any case, that's pretty much everything for us. I'll report back once Madeleine gets released and will let you know how she's doing with this new feeding approach. We're going to have a low key weekend at home-- hoping that by taking it slower, Madeleine can benefit as well. Kirsten and I don't do a slow life pace very well-- we're hoping it isn't necessary for too long.
Take care,
Brent
Thursday, August 7, 2008
Likely to be Released Tomorrow
Madeleine is still doing well and the doctors simply want to observe her for another night before releasing her. The medical plan laid out in the previous post is still valid. That's all for now-- hope to report further good news tomorrow. Take care,
Brent
Brent
Continued Progress
Madeleine had another good night in the hospital and we believe that we're getting closer to being discharged-- we'll know more early this afternoon as the doctors wanted to discuss her case on rounds to ensure full agreement on her medical plan. Kirsten and I believe the plan will be as follows:
1) Discharge: Madeleine will likely be released tomorrow-- allowing them another day to monitor her recovery from the pneumonia and for her to be fully weaned from the short term steroids that she has received in the hospital. She will continue on antibiotics for another week or so.
2) Feeding: We'll likely go home with a pump that we'll use to feed Madeleine throughout the night. Rather than feeding every three hours, we'll set it up to feed her small amounts of food on a constant basis. During the day, we'll feed her some via bottle but we won't push her. Our rationale is that we think she is refluxing after eating and her current pneumonia was potentially caused by "microaspirations" in the lungs. We need to conduct a sleep study to learn more about Madeleine's reflux and how best to treat it.
3) Sleep study: We'll schedule the sleep study for a few weeks from now. It would be nice to schedule it sooner but given Madeleine's infection, they don't think they'll get an accurate read on her long-term reflux issues.
That's about it for right now. We feel like we've made a little progress-- albeit very slow-- and we're hopeful that this medical plan will allow Madeleine to better control her reflux thereby enabling her growth. Thanks again for everyone's support.
Brent and Kirsten
1) Discharge: Madeleine will likely be released tomorrow-- allowing them another day to monitor her recovery from the pneumonia and for her to be fully weaned from the short term steroids that she has received in the hospital. She will continue on antibiotics for another week or so.
2) Feeding: We'll likely go home with a pump that we'll use to feed Madeleine throughout the night. Rather than feeding every three hours, we'll set it up to feed her small amounts of food on a constant basis. During the day, we'll feed her some via bottle but we won't push her. Our rationale is that we think she is refluxing after eating and her current pneumonia was potentially caused by "microaspirations" in the lungs. We need to conduct a sleep study to learn more about Madeleine's reflux and how best to treat it.
3) Sleep study: We'll schedule the sleep study for a few weeks from now. It would be nice to schedule it sooner but given Madeleine's infection, they don't think they'll get an accurate read on her long-term reflux issues.
That's about it for right now. We feel like we've made a little progress-- albeit very slow-- and we're hopeful that this medical plan will allow Madeleine to better control her reflux thereby enabling her growth. Thanks again for everyone's support.
Brent and Kirsten
Wednesday, August 6, 2008
Some Improvement
I spoke with Kirsten and she has some good news to report from the hospital: it looks like the infection is under control. Madeleine has been weaned off the additional oxygen support that she received yesterday and is back to the home settings of .5 liters of oxygen. She is still receiving additional support via IV steroids and the doctors haven't determined how they want to wean. Still, they are encouraged that she's responded so positively to the antibiotics.
This is our current plan:
1) We're planning on being in the hospital for at least a few more days. While the infection is in retreat, any lung infection is potentially serious so we need to play it safe. We'll continue with the current regimen of antibiotics until/unless a the blood or mucus cultures grow something that requires a change.
2) We'll continue with the continuous feeds via a pump as this approach seems to limit Madeleine's reflux.
3) We're unsure when the sleep study will be scheduled. There is some thought that the sleep study may be unnecessary as the change in feeding could be a short-term solution for Madeleine's reflux. Kirsten and I think that the feeding change is a good one but we also think that the sleep study is necessary and could shed further light on the situation. Kirsten is planning on speaking further with the attending doctor about this issue.
That's all for now. We're hoping that the major drama has passed and that we're on the road to recovery. Thanks,
Brent
This is our current plan:
1) We're planning on being in the hospital for at least a few more days. While the infection is in retreat, any lung infection is potentially serious so we need to play it safe. We'll continue with the current regimen of antibiotics until/unless a the blood or mucus cultures grow something that requires a change.
2) We'll continue with the continuous feeds via a pump as this approach seems to limit Madeleine's reflux.
3) We're unsure when the sleep study will be scheduled. There is some thought that the sleep study may be unnecessary as the change in feeding could be a short-term solution for Madeleine's reflux. Kirsten and I think that the feeding change is a good one but we also think that the sleep study is necessary and could shed further light on the situation. Kirsten is planning on speaking further with the attending doctor about this issue.
That's all for now. We're hoping that the major drama has passed and that we're on the road to recovery. Thanks,
Brent
An Additional Complication
The doctors ordered a chest X-Ray yesterday as part of the standard baselining done when a patient is admitted. The results came back last evening demonstrating that Madeleine is fighting an infection in her lungs. The infection doesn't appear to be major-- no one can hear anything in her lungs and they've started her on a round of general antibiotics. They've also taken blood and mucus cultures and hope that these cultures will allow them to determine the specific infection that they are fighting. If it is bacterial, they will adjust the antibiotics she's on if necessary to target the bug. If its viral, they're not able to treat with antibiotics and we'll likely just monitor the infection.
This is definitely a downturn for Madeleine and we're simply hopeful that they caught it early and she's able to rebound quickly. The good news is that so far, she's shown no further signs of infection: She is alert and looks good, she does not have a fever, and other than reliance on a higher amount of oxygen, she is not displaying any other signs of infection. The doctors did wean her a bit this morning from 2 liters to 1.5 liters and they'll monitor Madeleine's status before weaning further.
Assuming that the infection is under control and dissipates in the next few days, the remaining question is when it makes sense to schedule Madeleine's sleep study. We all still agree that it is likely that Madeleine struggles with blocked apnea resulting in bradycardia episodes but a sleep study may not be useful when Madeleine is on a higher flow of oxygen. After all, the oxygen flow may be a solution to the blockage so they may not diagnose any blockage if they conduct the sleep study while she's on a higher flow. Madeleine is reliant on the higher flow right now so it isn't possible for them to simply drop the flow for the study. Kirsten is at the hospital today and she's going to talk with the doctors about the timeframe and approach for treating the infection while also determining a plan for conducting the sleep study.
That's all for now. I'll provide further updates regarding the medical plan and any other changes in Madeleine's condition. Thanks again for your interest and support.
Brent
This is definitely a downturn for Madeleine and we're simply hopeful that they caught it early and she's able to rebound quickly. The good news is that so far, she's shown no further signs of infection: She is alert and looks good, she does not have a fever, and other than reliance on a higher amount of oxygen, she is not displaying any other signs of infection. The doctors did wean her a bit this morning from 2 liters to 1.5 liters and they'll monitor Madeleine's status before weaning further.
Assuming that the infection is under control and dissipates in the next few days, the remaining question is when it makes sense to schedule Madeleine's sleep study. We all still agree that it is likely that Madeleine struggles with blocked apnea resulting in bradycardia episodes but a sleep study may not be useful when Madeleine is on a higher flow of oxygen. After all, the oxygen flow may be a solution to the blockage so they may not diagnose any blockage if they conduct the sleep study while she's on a higher flow. Madeleine is reliant on the higher flow right now so it isn't possible for them to simply drop the flow for the study. Kirsten is at the hospital today and she's going to talk with the doctors about the timeframe and approach for treating the infection while also determining a plan for conducting the sleep study.
That's all for now. I'll provide further updates regarding the medical plan and any other changes in Madeleine's condition. Thanks again for your interest and support.
Brent
Tuesday, August 5, 2008
Bittersweet News
Before getting to the medical updates, make sure to check out the picasa site for pictures of Madeleine and the Bushey clan taken at her open house. We hired a photographer and there are tons of pictures. See the link at the top of the page and look for the folder entitled "July Party for Madeleine."
Okay, with that out of the way, here's the skinny on Madeleine. Kirsten and I took her to the hospital today for a check up with the pulmonary office and after much debate and discussion, we mutually agreed to admit her to the hospital. We're obviously disappointed that she's back in the hospital but we're also hopeful as we think we're getting closer to getting a grasp on all of her challenges. Here are the specific plans and reasoning for re-admitting her:
1) Determining cause and solution for bradycardia and tachypnia: Despite some limited progress, Madeleine continues to struggle with bradycardia (low heart rate) episodes and is also constantly tachypnic (she breathes too fast). Together, these issues pose some serious consequences: its never good when your heart rate drops and when she breathes too fast, she burns calories, thereby limiting her ability to gain weight. We talked at length about the cause of the bradycardia and tachypnia and all agreed that the primary culprit is reflux (i.e., food coming back up out of her stomach.) The unanswered question is why this is occuring. There are three possible problems: she has trouble swallowing, she has trouble processing food (slow motility), or something is pulling the food back up. The swallow issue is most dangerous as this can lead to aspiration of milk into the lungs and thankfully, the swallow study done a few weeks ago indicates that this isn't an issue. Furthermore, the milk scan done a few weeks ago shows that her motility is good indicating that food isn't sitting in her stomach too long. Therefore, it is likely that something is causing the food to come back up and the test that is needed to confirm this issue is a sleep test. Our nurse practitioner is fairly certain that Madeleine has an obstructed breathing passage and when it becomes obstructed, it creates a pocket of negative pressure, thereby pulling food up out of the stomach, causing her to cough and possibly block her breathing passage and causing bradycardia episodes. Additionally, since this food comes up with stomach fluid and it burns the esophagus causing pain and increased breathing. (As an example, think about when you burp and stuff comes up-- it hurts.) The sleep test will do three things: First, it will confrim that Madeleine does indeed have a blockage. Second, it will then determine the cause/location of the blockage. Its likely that the combination of her feeding tube and low muscle tone of the esophagus is causing the blockage. Finally, the sleep study will allow them to test out different solutions for the blockage. The two likely solutions are increased oxygen flow or increased flow via vapotherm, a high flow nasal canula that would blow room air that is very humid.
This may seem like a lot of information but it is actually very hopeful and helpful for Kirsten and I as we finally think we've found the cause and potential solution to the reflux challenges that Madeleine is struggling with. We're hopeful that the sleep test will be scheduled in one of the next few nights and we will provide the results as soon as they are available. Assuming we end up with increasing the oxygen and/or using the vapo-therm, the expectation is that as Madeleine grows, the muscles surrounding her esophagus will develop further and coupled with her overall growth, the incidence of reflux will greatly decrease, thereby allowing them to wean Madeleine. If this turns out to be the approach, its likely that Madeleine will be on an increased flow for at least a few months.
2) Test out alternative feeding plan: Given the number of bradycardia episodes and the belief that reflux is the culprit, the doctors want to put Madeleine on a continuous feeding pump that will replace bottle feeding in the short term. The thinking behind this approach is that a slow drip of food into the stomach will limit the volume of food in her stomach at any given time thereby decreasing the severity of any reflux episodes. Since any feeding change can pose challenges, the doctors would prefer to monitor Madeleine in the hospital for a few days.
3) Address oxygen saturation concerns: Madeleine was having a little difficulty keeping her saturation levels up. The doctors believe that the combination of her tachypnia and bradycardia events is the culprit and they think that the solution identified via the sleep study should help resolve this issue. Still, they want to resolve the issue sooner and expect to give her a steroid while she's in the hospital. They also will increase her nebulizer (breathing medicine) to every four hours just to make sure that her lungs are as open as possible.
4) Consult with a GI specialist: The doctors were convinced that once the isses listed above are addressed, we'll see a marked improvement with Madeleine. That being said, they agreed with us that it makes sense to work in consult with a GI specialist to ensure that our approach in feeding Madeleine makes sense and that they're doing everything they can to control the reflux.
Madeleine's time in the hospital shouldn't be too long: we're hoping that she is out by Friday and there is a silver lining in all of these details: Despite breathing too hard and having lots of trouble with bradycardia and reflux, Madeleine is still gaining weight: she weighed in at 7 lbs 4 oz. Assuming we can get the breathing and bradycardia episodes under control, it is entirely realistic that Madeleine's growth will take off.
That's all for now. We'll keep everyone informed as we learn more. We fully expect to report much better news in the coming days and weeks. Take care,
Brent
Okay, with that out of the way, here's the skinny on Madeleine. Kirsten and I took her to the hospital today for a check up with the pulmonary office and after much debate and discussion, we mutually agreed to admit her to the hospital. We're obviously disappointed that she's back in the hospital but we're also hopeful as we think we're getting closer to getting a grasp on all of her challenges. Here are the specific plans and reasoning for re-admitting her:
1) Determining cause and solution for bradycardia and tachypnia: Despite some limited progress, Madeleine continues to struggle with bradycardia (low heart rate) episodes and is also constantly tachypnic (she breathes too fast). Together, these issues pose some serious consequences: its never good when your heart rate drops and when she breathes too fast, she burns calories, thereby limiting her ability to gain weight. We talked at length about the cause of the bradycardia and tachypnia and all agreed that the primary culprit is reflux (i.e., food coming back up out of her stomach.) The unanswered question is why this is occuring. There are three possible problems: she has trouble swallowing, she has trouble processing food (slow motility), or something is pulling the food back up. The swallow issue is most dangerous as this can lead to aspiration of milk into the lungs and thankfully, the swallow study done a few weeks ago indicates that this isn't an issue. Furthermore, the milk scan done a few weeks ago shows that her motility is good indicating that food isn't sitting in her stomach too long. Therefore, it is likely that something is causing the food to come back up and the test that is needed to confirm this issue is a sleep test. Our nurse practitioner is fairly certain that Madeleine has an obstructed breathing passage and when it becomes obstructed, it creates a pocket of negative pressure, thereby pulling food up out of the stomach, causing her to cough and possibly block her breathing passage and causing bradycardia episodes. Additionally, since this food comes up with stomach fluid and it burns the esophagus causing pain and increased breathing. (As an example, think about when you burp and stuff comes up-- it hurts.) The sleep test will do three things: First, it will confrim that Madeleine does indeed have a blockage. Second, it will then determine the cause/location of the blockage. Its likely that the combination of her feeding tube and low muscle tone of the esophagus is causing the blockage. Finally, the sleep study will allow them to test out different solutions for the blockage. The two likely solutions are increased oxygen flow or increased flow via vapotherm, a high flow nasal canula that would blow room air that is very humid.
This may seem like a lot of information but it is actually very hopeful and helpful for Kirsten and I as we finally think we've found the cause and potential solution to the reflux challenges that Madeleine is struggling with. We're hopeful that the sleep test will be scheduled in one of the next few nights and we will provide the results as soon as they are available. Assuming we end up with increasing the oxygen and/or using the vapo-therm, the expectation is that as Madeleine grows, the muscles surrounding her esophagus will develop further and coupled with her overall growth, the incidence of reflux will greatly decrease, thereby allowing them to wean Madeleine. If this turns out to be the approach, its likely that Madeleine will be on an increased flow for at least a few months.
2) Test out alternative feeding plan: Given the number of bradycardia episodes and the belief that reflux is the culprit, the doctors want to put Madeleine on a continuous feeding pump that will replace bottle feeding in the short term. The thinking behind this approach is that a slow drip of food into the stomach will limit the volume of food in her stomach at any given time thereby decreasing the severity of any reflux episodes. Since any feeding change can pose challenges, the doctors would prefer to monitor Madeleine in the hospital for a few days.
3) Address oxygen saturation concerns: Madeleine was having a little difficulty keeping her saturation levels up. The doctors believe that the combination of her tachypnia and bradycardia events is the culprit and they think that the solution identified via the sleep study should help resolve this issue. Still, they want to resolve the issue sooner and expect to give her a steroid while she's in the hospital. They also will increase her nebulizer (breathing medicine) to every four hours just to make sure that her lungs are as open as possible.
4) Consult with a GI specialist: The doctors were convinced that once the isses listed above are addressed, we'll see a marked improvement with Madeleine. That being said, they agreed with us that it makes sense to work in consult with a GI specialist to ensure that our approach in feeding Madeleine makes sense and that they're doing everything they can to control the reflux.
Madeleine's time in the hospital shouldn't be too long: we're hoping that she is out by Friday and there is a silver lining in all of these details: Despite breathing too hard and having lots of trouble with bradycardia and reflux, Madeleine is still gaining weight: she weighed in at 7 lbs 4 oz. Assuming we can get the breathing and bradycardia episodes under control, it is entirely realistic that Madeleine's growth will take off.
That's all for now. We'll keep everyone informed as we learn more. We fully expect to report much better news in the coming days and weeks. Take care,
Brent
Friday, August 1, 2008
Making Great Strides in Michigan
I apologize for the long break in posts-- we've been busy visiting family in Michigan and I just haven't made time to type. However, I've posted some pictures of Madeleine today-- see the July album. We'll post additional pictures on Sunday or early next week-- I don't have the disk with me right now and the internet connection at my parent's condo isn't very fast.
As you can probably see from some of the photos, Madeleine continues to progress and we feel like she's making major progress. Our primary focus remains on her weight gain and we think she's starting to take off. On this past Monday, we took her to the hospital in Flint (our friend Kelly is a NICU nurse at Hurley Hospital) to weigh her and she was up to 6 lbs 14 oz. Based on her previous weight when she was last admitted to the hospital (6 lbs 4 oz), she had put on over 1/2 ounce/day. Our goal is to get her to gain up to 1 oz per day, so we're fairly pleased with the progress. Since weighing her, Kirsten and I are convinced that she has continued to grow-- we don't have any empirical evidence as we haven't weighed her again but she just looks bigger and her clothes are fitting tighter.
In addition to getting bigger, Madeleine is much more alert and has improved her muscle coordination a great deal in the past two weeks. I was away for four days on a baseball trip and I was amazed by Madeleine's progress in that short timeframe. Before I left, she didn't really react to outside stimuli but now she is reaching out for toys, she is reacting when the dogs walk by, and she has even followed a Baby Einstein show that Kirsten and my mom purchased. In short, she's making great progress and we couldn't be happier.
Next week promises to be a big week for Madeleine. She has a follow-up appointment with the pulmonologist and they will download data from her apnea monitor. We have had some bradycardia events (low heartrate) and we're interested to get the pulmonologist's reaction. The episodes have greatly decreased in frequency and duration and we're hopeful that the data will agree with our belief that Madeleine is slowly resolving this issue. Kirsten and Madeleine will also continue working with home nursing care as well as with physical and occupational therapists as we continue to push Madeleine's development as we push her to gain weight. IN short-- we feel like we're on the road to recovery and hope that we can begin making up ground.
In terms of future goals, we've backed off our timeframes on resolving Madeleine's medical issues. We're still confident that Madeleine will overcome all of her medical challenges including: reflux, bradycardia, dependence on oxygen, and her ileostomy. Instead of placing aggressive goals, we've just said that we hope to get her instestines reattached some time this fall (shooting for October) and we hope that by the New Year, she is "cord free" meaning she'll be off of oxygen support, will be feeding on her own, and will no longer need the apnea monitor. The important factor is that all of her major medical issues should be resolved-- we're just going to need a bit more patience.
That's all for now. Again-- I will post a ton more pictures in the next few days. Thanks again for everyone's support and interest.
As you can probably see from some of the photos, Madeleine continues to progress and we feel like she's making major progress. Our primary focus remains on her weight gain and we think she's starting to take off. On this past Monday, we took her to the hospital in Flint (our friend Kelly is a NICU nurse at Hurley Hospital) to weigh her and she was up to 6 lbs 14 oz. Based on her previous weight when she was last admitted to the hospital (6 lbs 4 oz), she had put on over 1/2 ounce/day. Our goal is to get her to gain up to 1 oz per day, so we're fairly pleased with the progress. Since weighing her, Kirsten and I are convinced that she has continued to grow-- we don't have any empirical evidence as we haven't weighed her again but she just looks bigger and her clothes are fitting tighter.
In addition to getting bigger, Madeleine is much more alert and has improved her muscle coordination a great deal in the past two weeks. I was away for four days on a baseball trip and I was amazed by Madeleine's progress in that short timeframe. Before I left, she didn't really react to outside stimuli but now she is reaching out for toys, she is reacting when the dogs walk by, and she has even followed a Baby Einstein show that Kirsten and my mom purchased. In short, she's making great progress and we couldn't be happier.
Next week promises to be a big week for Madeleine. She has a follow-up appointment with the pulmonologist and they will download data from her apnea monitor. We have had some bradycardia events (low heartrate) and we're interested to get the pulmonologist's reaction. The episodes have greatly decreased in frequency and duration and we're hopeful that the data will agree with our belief that Madeleine is slowly resolving this issue. Kirsten and Madeleine will also continue working with home nursing care as well as with physical and occupational therapists as we continue to push Madeleine's development as we push her to gain weight. IN short-- we feel like we're on the road to recovery and hope that we can begin making up ground.
In terms of future goals, we've backed off our timeframes on resolving Madeleine's medical issues. We're still confident that Madeleine will overcome all of her medical challenges including: reflux, bradycardia, dependence on oxygen, and her ileostomy. Instead of placing aggressive goals, we've just said that we hope to get her instestines reattached some time this fall (shooting for October) and we hope that by the New Year, she is "cord free" meaning she'll be off of oxygen support, will be feeding on her own, and will no longer need the apnea monitor. The important factor is that all of her major medical issues should be resolved-- we're just going to need a bit more patience.
That's all for now. Again-- I will post a ton more pictures in the next few days. Thanks again for everyone's support and interest.
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