Since learning on Tuesday that Madeleine had an infection, we've seen steady progress in the right direction and we're fairly confident that Madeleine is overcoming this infection successfully. We've obviously pleased and we're simply chalking this episode up to a fact of life-- it seems like everyone we know in the DC area is fighting a cold right now. The doctors haven't gotten anything in the cultures-- that is not uncommon-- but they'll likely keep the antibiotics going for a few more days just to be safe.
In terms of impacting the date for Madeleine coming home, we're still not able to predict how long this will delay us. In a perfect world, Madeleine would be coming home today or Monday-- neither date is a possibility as Madeleine is still being weaned from the ventilator-- she's come down on her oxygen levels to 35% (very good) but still needs to come down on the breathing rate and amount of pressure support provided by the vent. Additionally, the doctors are going to closely monitor Madeleine to make sure that she's stable and able to be successful at the lower vent settings.
All in all, we're in a good state in the long-term and we're dealing with the frustrating short-term issues. On the bright side, this delay gives us time to resolve some lingering insurance questions, lets us get our house fully prepared for having nursing care in our home, and also allows us to get trained and more comfortable with the trach.
That's all for now-- we'll keep you posted as we learn more.
Brent and Kirsten
Thursday, October 30, 2008
Tuesday, October 28, 2008
Not a Huge Deal
Hey folks-- I've gotten a few worried phone calls and emails and I feel the need to clarify my last post. Madeleine is doing fine-- the doctors are already coming down on her oxygen support and they're pretty convinced that this is a minor virus infection. We're still awaiting results from the cultures (they typically take around 24 hours) so right now, they are administering general antibiotics to address any possible bacterial infections and are also protecting against secondary infections (pneumonia being the biggest concern.)
All that being said, this isn't a big deal. Madeleine's come through 5 surgeries and a ton of other much worse things. That being said, it was and is frustrating to accept that our time frame is being delayed again. I was very prepared for Madeleine to be home soon and this is going to delay us. It could be just a few days and while not a big deal in the grand scheme of things, every day/hour/minute/second delay in the hospital is one too long for me. Simply put: I want my kid home and she will get home, just not in the timeframe we expected...
Thanks for your concern and support.
Brent
All that being said, this isn't a big deal. Madeleine's come through 5 surgeries and a ton of other much worse things. That being said, it was and is frustrating to accept that our time frame is being delayed again. I was very prepared for Madeleine to be home soon and this is going to delay us. It could be just a few days and while not a big deal in the grand scheme of things, every day/hour/minute/second delay in the hospital is one too long for me. Simply put: I want my kid home and she will get home, just not in the timeframe we expected...
Thanks for your concern and support.
Brent
Banging My Head Against My Desk
I just got off the phone with the hospital and they're starting antibiotics under the suspicion that Madeleine has an infection. She has a low grade fever, has increased output in her colostomy bag, and the mucus secretions from the trach are thicker. Additionally, they did a scan of her blood (CBC) and it revealed an elevated white blood cell count. All in all, its pretty textbook signs that Madeleine has some type of infection.
There's nothing particularly alarming or terrible but they've sent off cultures and have started general antibiotics (Venc and mirapenum) to treat any possible bacterial infection. We don't know much else but its likely this will delay her return home-- they've gone up on her vent settings to keep her comfortable. In the grand scheme of things, is this a big deal? Likely not. Its just frustrating/agonizing/unfair and lots of other much more inappropriate words all tied together. (I don't have it in me right now to be positive/upbeat.)
I'll post more once we hear back-- its likely we won't know much for the first 24-48 hours...
There's nothing particularly alarming or terrible but they've sent off cultures and have started general antibiotics (Venc and mirapenum) to treat any possible bacterial infection. We don't know much else but its likely this will delay her return home-- they've gone up on her vent settings to keep her comfortable. In the grand scheme of things, is this a big deal? Likely not. Its just frustrating/agonizing/unfair and lots of other much more inappropriate words all tied together. (I don't have it in me right now to be positive/upbeat.)
I'll post more once we hear back-- its likely we won't know much for the first 24-48 hours...
Monday, October 27, 2008
Close to Going Home
All,
Sorry for the lack of posts in the past week-- I've been busy, tired, and just didn't feel like blogging. Despite my lack of energy, Madeleine continues to do very well. The surgery went great last week and she's recovering very well. Today was the week anniversary of the surgery and the original trach was replaced today and the surgical sutures were removed. The trach surgeon was happy with how it looks and has cleared her for normal maintenance procedures. With that in mind, here's a recap of everything we've learned about the trach and the medical plan going forward:
- The trach sits at the base of Madeleine's throat (if you want to know exactly where, follow your sternum up with your index finger until you get to the end in between your collarbones-- there should be a semi-circle opening. )
- The trach is easily removed and has to be changed on a weekly basis. The most frequent question I've gotten so far is "what if she pulls it out?" The answer is that we just put it back in. The trach is held in place by velcro straps that make it look like a tight necklace. (I'll take pictures soon so you can see what it looks like.)
- Madeleine has been weaned to very low levels of ventilator support (for those that care, she's on a rate of 8 breaths/minute and 12 on pressure.) She doesn't have to have this support all of the time but it ensures that her lungs don't collapse and also allows her to breathe more easily, thereby conserving calories for growth. She is also getting 30% oxygen support-- normal air is 21%. This low level of oxygen support is given to help her lungs develop and should also help prevent increases in Madeleine's pulmonary hypertension.
- Madeleine is going to be on 24 hour ventilator support until at least April of next year. This isn't typical and isn't absolutely required for Madeleine but the doctors have set this expectation as they want to maximize her growth and also want to protect her in the event that she gets sick this winter. Since her lungs are extremely compromised and her pulmonary hypertension can get drastically worse during an infection, they want to have the ventilator providing support throughout the winter. This sounds pretty bad but the vent came last week and it is small-- about the size of an old laptop. Its heavy but its size makes it fairly easy to maneuver.
- In April, we'll determine the path going forward. A lot will depend on how her lungs are performing and how much weight she gains. In the spring, they'll re-assess her pulmonary hypertension with the expectation that with her growing, the PH will be lower. Additionally, they'll re-conduct tests on her GI tract (swallow study, sleep study, milk scan, etc.) to determine if Madeleine can begin feeding via her mouth again. (she's going to be on tube feeding via the NJ tube throughout the winter.)
- In the next few months, we're going to spend a lot of time at home as we've been warned to limit Madeleine's interactions with others given the concern surrounding infection. We hope folks can visit (sans children) and hope that you'll understand our hyper-vigilance regarding infection. (prepare to be inundated with Purel when you stop by.) We hate the concept of keeping Madeleine isolated but since any infection can be life threatening, we've accepted that as a fact.
- In short- the plan for the next four months is to keep Madeleine at home as much as possible, to keep her happy and stable, to see significant gain in weight, and-- most importantly-- outside of a few checkups, to AVOID THE HOSPITAL AS MUCH AS POSSIBLE. (We love the foks at Children's but I think they understand the necessity for capital letters.)
- Given Madeleine's medical needs, we're going to have nursing care in our house for 18 hours/day. This care will allow us to go to work knowing that a nurse is caring for Madeleine. Additionally, we'll have a nurse at home when we're asleep so that we don't have to worry about Madeleine. The big concern is that Madeleine must be suctioned when she is on the ventilator and we can't worry about that and sleep soundly. This requires some major life changes for Kirsten and I and we've already taken one step by moving Madeleine's nursery onto the ground floor office. (My parents have done the Lion's share of moving and painting and we can't thank them enough.) Again, these were changes we didn't want nor anticipate but by moving the nursery to the ground floor, we limit the amount of lifting and moving of all of Madeleine's medical equipment and we also limit the intrusion of a nurse when we're sleeping (and I am snoring.)
That's the major changes that we've learned/made in the past week. We're also still getting used to the cosmetic nature of the trach. I'm now getting to the point where it doesn't bother me but the first few times I saw it, it was definitely difficult to see. (Its hard to explain.) I understand why Madeleine needs it and I think it was the absolute best decision we could have made as she looks much happier and more comfortable. Still, its difficult to see something like that on your child. Kirsten and I recognize that others may have a difficult time the first time they see it and that's just something we'll have to get used to. It isn't a permanent fixture on Madeleine-- its just medical support that she needs so that she can grow and develop.
That's all for now. We're hoping to get Madeleine home soon as she'll be medically cleared on Wednesday or Thursday. The logistics of identifying nursing and getting the insurance and other stuff resolved is slowing us down right now but I'm sure we'll get all of that figured out in the next few days. Thanks again for your support!
Brent and Kirsten
Sorry for the lack of posts in the past week-- I've been busy, tired, and just didn't feel like blogging. Despite my lack of energy, Madeleine continues to do very well. The surgery went great last week and she's recovering very well. Today was the week anniversary of the surgery and the original trach was replaced today and the surgical sutures were removed. The trach surgeon was happy with how it looks and has cleared her for normal maintenance procedures. With that in mind, here's a recap of everything we've learned about the trach and the medical plan going forward:
- The trach sits at the base of Madeleine's throat (if you want to know exactly where, follow your sternum up with your index finger until you get to the end in between your collarbones-- there should be a semi-circle opening. )
- The trach is easily removed and has to be changed on a weekly basis. The most frequent question I've gotten so far is "what if she pulls it out?" The answer is that we just put it back in. The trach is held in place by velcro straps that make it look like a tight necklace. (I'll take pictures soon so you can see what it looks like.)
- Madeleine has been weaned to very low levels of ventilator support (for those that care, she's on a rate of 8 breaths/minute and 12 on pressure.) She doesn't have to have this support all of the time but it ensures that her lungs don't collapse and also allows her to breathe more easily, thereby conserving calories for growth. She is also getting 30% oxygen support-- normal air is 21%. This low level of oxygen support is given to help her lungs develop and should also help prevent increases in Madeleine's pulmonary hypertension.
- Madeleine is going to be on 24 hour ventilator support until at least April of next year. This isn't typical and isn't absolutely required for Madeleine but the doctors have set this expectation as they want to maximize her growth and also want to protect her in the event that she gets sick this winter. Since her lungs are extremely compromised and her pulmonary hypertension can get drastically worse during an infection, they want to have the ventilator providing support throughout the winter. This sounds pretty bad but the vent came last week and it is small-- about the size of an old laptop. Its heavy but its size makes it fairly easy to maneuver.
- In April, we'll determine the path going forward. A lot will depend on how her lungs are performing and how much weight she gains. In the spring, they'll re-assess her pulmonary hypertension with the expectation that with her growing, the PH will be lower. Additionally, they'll re-conduct tests on her GI tract (swallow study, sleep study, milk scan, etc.) to determine if Madeleine can begin feeding via her mouth again. (she's going to be on tube feeding via the NJ tube throughout the winter.)
- In the next few months, we're going to spend a lot of time at home as we've been warned to limit Madeleine's interactions with others given the concern surrounding infection. We hope folks can visit (sans children) and hope that you'll understand our hyper-vigilance regarding infection. (prepare to be inundated with Purel when you stop by.) We hate the concept of keeping Madeleine isolated but since any infection can be life threatening, we've accepted that as a fact.
- In short- the plan for the next four months is to keep Madeleine at home as much as possible, to keep her happy and stable, to see significant gain in weight, and-- most importantly-- outside of a few checkups, to AVOID THE HOSPITAL AS MUCH AS POSSIBLE. (We love the foks at Children's but I think they understand the necessity for capital letters.)
- Given Madeleine's medical needs, we're going to have nursing care in our house for 18 hours/day. This care will allow us to go to work knowing that a nurse is caring for Madeleine. Additionally, we'll have a nurse at home when we're asleep so that we don't have to worry about Madeleine. The big concern is that Madeleine must be suctioned when she is on the ventilator and we can't worry about that and sleep soundly. This requires some major life changes for Kirsten and I and we've already taken one step by moving Madeleine's nursery onto the ground floor office. (My parents have done the Lion's share of moving and painting and we can't thank them enough.) Again, these were changes we didn't want nor anticipate but by moving the nursery to the ground floor, we limit the amount of lifting and moving of all of Madeleine's medical equipment and we also limit the intrusion of a nurse when we're sleeping (and I am snoring.)
That's the major changes that we've learned/made in the past week. We're also still getting used to the cosmetic nature of the trach. I'm now getting to the point where it doesn't bother me but the first few times I saw it, it was definitely difficult to see. (Its hard to explain.) I understand why Madeleine needs it and I think it was the absolute best decision we could have made as she looks much happier and more comfortable. Still, its difficult to see something like that on your child. Kirsten and I recognize that others may have a difficult time the first time they see it and that's just something we'll have to get used to. It isn't a permanent fixture on Madeleine-- its just medical support that she needs so that she can grow and develop.
That's all for now. We're hoping to get Madeleine home soon as she'll be medically cleared on Wednesday or Thursday. The logistics of identifying nursing and getting the insurance and other stuff resolved is slowing us down right now but I'm sure we'll get all of that figured out in the next few days. Thanks again for your support!
Brent and Kirsten
Tuesday, October 21, 2008
Successful Surgery
Madeleine's tracheostomy was successfully inserted yesterday and she is recovering very well. The surgeon was extremely pleased with the procedure. In addition to inserting the trach, they took a "look" with cameras to assess the extent of any damage done by the previous ventilation tubes as this is a risk whenever you are intubated. There was some swelling in the airway that could be attributed to the presence of the prior intubations. They can re-assess later once the swelling from surgery has decreased and the hope and expectation is that this will go away.
In terms of immediate recovery, we've been told to expect Madeleine to experience some pain adn discomfort for the next 5-7 days. They're giving her medication to keep her comfortable so we hope the pain she feels is minimal. Once past that timeframe, we expect her to be much more comfortable.
The hardest part about the tracheostomy so far is the cosmetic nature. In some ways, it is much better as she has far less tape on her face-- only the feeding tube's tape remains. On the flip side, it is hard to see another "medical apparatus" on Madeleine. I know rationally that she needed it and that it will go away once its no longer needed but it is still tough to accept. I'll get over it-- just being honest about the frustrating aspect of the surgery.
In terms of plans moving forward, we're meeting with Madeleine's whole team of doctors and caregivers today and will lay out the plan going forward. We have tons of questions including:
- Expected time remaining in the hospital?
- Expected time in a rehabilitation hospital (if any)?
- Medical supplies we'll need once she gets home?
- Nursing care we'll need at home?
- The impact on lifestyle when Madeleine is on the ventilator.
- The impact on lifestyle as Madeleine is weaned from the ventilator and then breathes through the tracheostomy?
- When can we start to wean off the ventilator? What evidence do we need to look for?
- How long do we expect her to need the ventilator? What milestones will indicate that she won't need it?
- How long do we expect the trach to remain? What milestones will indicate that it can be removed?
- What other procedures may be necessary to ensure that Madeleine's airway is protected? This includes any surgeries to strengthen the valve at the top of her stomach to prevent reflux and posible aspirations. How do we make such decisions?
We've had preliminary discusions on all of these issues but we want to raise these questions in the family meeting so that we reach a consensus with her medical team. The folks at Children's have been great-- especially the CICU folks during our stay-- but getting everyone on the same page is difficult and the family meeting should help facilitate such communication.
We'll post the results of the meeting when we get some time following the meeting. Thanks again for your support.
Brent and Kirsten
In terms of immediate recovery, we've been told to expect Madeleine to experience some pain adn discomfort for the next 5-7 days. They're giving her medication to keep her comfortable so we hope the pain she feels is minimal. Once past that timeframe, we expect her to be much more comfortable.
The hardest part about the tracheostomy so far is the cosmetic nature. In some ways, it is much better as she has far less tape on her face-- only the feeding tube's tape remains. On the flip side, it is hard to see another "medical apparatus" on Madeleine. I know rationally that she needed it and that it will go away once its no longer needed but it is still tough to accept. I'll get over it-- just being honest about the frustrating aspect of the surgery.
In terms of plans moving forward, we're meeting with Madeleine's whole team of doctors and caregivers today and will lay out the plan going forward. We have tons of questions including:
- Expected time remaining in the hospital?
- Expected time in a rehabilitation hospital (if any)?
- Medical supplies we'll need once she gets home?
- Nursing care we'll need at home?
- The impact on lifestyle when Madeleine is on the ventilator.
- The impact on lifestyle as Madeleine is weaned from the ventilator and then breathes through the tracheostomy?
- When can we start to wean off the ventilator? What evidence do we need to look for?
- How long do we expect her to need the ventilator? What milestones will indicate that she won't need it?
- How long do we expect the trach to remain? What milestones will indicate that it can be removed?
- What other procedures may be necessary to ensure that Madeleine's airway is protected? This includes any surgeries to strengthen the valve at the top of her stomach to prevent reflux and posible aspirations. How do we make such decisions?
We've had preliminary discusions on all of these issues but we want to raise these questions in the family meeting so that we reach a consensus with her medical team. The folks at Children's have been great-- especially the CICU folks during our stay-- but getting everyone on the same page is difficult and the family meeting should help facilitate such communication.
We'll post the results of the meeting when we get some time following the meeting. Thanks again for your support.
Brent and Kirsten
Monday, October 20, 2008
Surgery Today
If you haven't seen the posting from yesterday, please read below as it explains the tracheostomy surgery/procedure. We met with Madeleine's doctors yesterday and agreed that the tracheostomy is needed and there is an opening for today (Monday to do the procedure). We're the "add-on" case for the day so we don't have a specific time. Its likely that the procedure will take place in the afternoon but if they have a change in schedule this morning, they will take her in. As I said in my post yesterday, we're disappointed to reach the point where Madeleine is dependent on the vent for the next few months but we've accepted that as fact and are looking forward to seeing Madeleine make progress in the weeks and months to come. We've grilled her team of doctors and they're quite confident that this is the step that will get us over the hump.
In any case, I don't have much else to report right now. I'll definitely send up a post to let everyone know once the procedure is completed. We also have a team meeting with all of Madeleine's doctors (I hope they have a large room) so that we can discuss the short and long-term ramifications of the tracheostomy. The meeting usually takes place before the procedure but we realized that we're doing the procedure anyway so there was no need to wait. Instead, we hope to use the meeting as a way to lay out medical milestones for Madeleine (at this weight, we'll decide to try this... etc.). We will also discuss the lifestyle impact of the trach procedure and how Kirsten and I will need to adjust our lifestyle to meet Madeleine's needs. That's all important information and I'm sure will be included in the posts this week.
Thanks all. Keep the prayers/thoughts coming. This surgery/procedure is pretty routine but with Madeleine, routine seems to be anything but....
Brent and Kirsten
In any case, I don't have much else to report right now. I'll definitely send up a post to let everyone know once the procedure is completed. We also have a team meeting with all of Madeleine's doctors (I hope they have a large room) so that we can discuss the short and long-term ramifications of the tracheostomy. The meeting usually takes place before the procedure but we realized that we're doing the procedure anyway so there was no need to wait. Instead, we hope to use the meeting as a way to lay out medical milestones for Madeleine (at this weight, we'll decide to try this... etc.). We will also discuss the lifestyle impact of the trach procedure and how Kirsten and I will need to adjust our lifestyle to meet Madeleine's needs. That's all important information and I'm sure will be included in the posts this week.
Thanks all. Keep the prayers/thoughts coming. This surgery/procedure is pretty routine but with Madeleine, routine seems to be anything but....
Brent and Kirsten
Sunday, October 19, 2008
Up and Down Week
Up and Down Week
Its been a long and busy week, thus the lack of posts. This will likely be a long post so if you’re looking for the quick status: Madeleine is currently on a ventilator and is stable. Read on for the details and the plan moving forward.
My last post indicated that Madeleine was intubated and was stable. The following day, Madeleine continued her slow wean from the ventilator and the plan was to extubate Madeleine by the end of the week. Of course, Madeleine—true to form—decided to shake up the plans on Tuesday night when she extubated herself by pulling out her breathing tube. The nurse was shocked that Madeleine was able to do it as the tube was connected very well and Madeleine was sleeping. The nurse stepped out for a moment and when she came back in Madeleine was still sleeping but the ventilator was making noise. The nurse went to turn off the buzzer on the ventilator and then realized that Madeleine had pulled her tube out. Kirsten and I have seen babies in the NICU extubate themselves and it is usually very scary as the baby can struggle due to the traumatic nature of such a drastic change. Not my daughter... Luckily for Madeleine, she was fine and didn’t even need to be re-intubated. Yes—we’ve just added this event to the ever growing pile of crazy events that Madeleine has encountered.
Unfortunately, after a few good days off the ventilator, Madeleine’s lung performance went down hill on Friday and she was re-intubated on Friday afternoon. Right now, Madeleine is doing well on the ventilator and we’re faced with some difficult decisions. The doctors are concerned that Madeleine needs long-term (likely months) ventilator support until she will be able to breathe effectively. They believe that the repeated bouts with pneumonia, her prematurity, her pulmonary hypertension, and her inability to grow have caused her lungs to be underdeveloped and unable to breathe without the support of a ventilator. Furthermore, they believe that while she can do well for a few days off the ventilator, her repeated steps back makes it difficult for her to gain weight and develop. Recognizing that Madeleine can’t continue to wean off the ventilator only to be re-intubated a week later, they are recommending that Madeleine receive a tracheostomy—a surgically placed ventilator tube. Their reasoning is as follows:
- A tracheostomy (trach) is recommended whenever someone will knowingly be on a ventilator longer than a few weeks.
- The trach is better for someone with Madeleine's medical picture as it is easier for the nurses to suction and clear out the gunk (that's a technical term) in her lungs.
- The trach is less intrusive than a normal ventilator tube as it doesn't impact her sinuses and some of her throat/airway. Repeated on/off intubation can cause scarring and other problems.
As with any medical procedure/treatment, there are some negatives as well. While there is some medical risk with the trach, the negatives are more lifestyle issues as there will be additional burden on maintaining and monitoring Madeleine with a trach. I'll go into detail on these issues in a future posting and while they could be significant, they're somewhat inconsequential as we agree with the doctors that from a medical standpoint, Madeleine needs to have a trach. We're obviously disappointed that we have to take this step and admit that Madeleine needs to have medical support for an extended period of time. At the same time, we're comfortable with the fact that this step should be the one that helps get us over the hump and will allow Madeleine to grow and develop. That's essentially the most important thing for Madeleine right now. As she grows and develops, the doctors expect her lung functioning to improve and they expect her hypertension to improve/decrease. Eventually, they will be able to re-attach Madeleine's intestines, thereby eliminating the colostomy bag and she'll also develop to the point where we can begin feeding her without a feeding tube. These goals are all a bit down the line and we can't even begin to put a time frame around them. However, I've listed them to reiterate that the goal of the trach for Madeleine is to allow her to develop so that all of her other issues can be addressed. Furthermore, the trach itself is a temporary step as it will be removed when the doctors determine that she's able to breather on her own. In short: its a step we would prefer to avoid but recognizing the necessity, we're moving forward and expect this to be the step that allows Madeleine to recover and move forward effectively.
I'm sure you may have questions about a trach as it is a fairly uncommon procedure. I'll do my best to post information about how they do the procedure, what it entails, and how long we'll have it as we learn more about it. If you have questions, feel free to research online and/or give us a call. Thanks again for your support. I'm headed to the hospital and I plan on posting additional information later tonight.
Brent
Its been a long and busy week, thus the lack of posts. This will likely be a long post so if you’re looking for the quick status: Madeleine is currently on a ventilator and is stable. Read on for the details and the plan moving forward.
My last post indicated that Madeleine was intubated and was stable. The following day, Madeleine continued her slow wean from the ventilator and the plan was to extubate Madeleine by the end of the week. Of course, Madeleine—true to form—decided to shake up the plans on Tuesday night when she extubated herself by pulling out her breathing tube. The nurse was shocked that Madeleine was able to do it as the tube was connected very well and Madeleine was sleeping. The nurse stepped out for a moment and when she came back in Madeleine was still sleeping but the ventilator was making noise. The nurse went to turn off the buzzer on the ventilator and then realized that Madeleine had pulled her tube out. Kirsten and I have seen babies in the NICU extubate themselves and it is usually very scary as the baby can struggle due to the traumatic nature of such a drastic change. Not my daughter... Luckily for Madeleine, she was fine and didn’t even need to be re-intubated. Yes—we’ve just added this event to the ever growing pile of crazy events that Madeleine has encountered.
Unfortunately, after a few good days off the ventilator, Madeleine’s lung performance went down hill on Friday and she was re-intubated on Friday afternoon. Right now, Madeleine is doing well on the ventilator and we’re faced with some difficult decisions. The doctors are concerned that Madeleine needs long-term (likely months) ventilator support until she will be able to breathe effectively. They believe that the repeated bouts with pneumonia, her prematurity, her pulmonary hypertension, and her inability to grow have caused her lungs to be underdeveloped and unable to breathe without the support of a ventilator. Furthermore, they believe that while she can do well for a few days off the ventilator, her repeated steps back makes it difficult for her to gain weight and develop. Recognizing that Madeleine can’t continue to wean off the ventilator only to be re-intubated a week later, they are recommending that Madeleine receive a tracheostomy—a surgically placed ventilator tube. Their reasoning is as follows:
- A tracheostomy (trach) is recommended whenever someone will knowingly be on a ventilator longer than a few weeks.
- The trach is better for someone with Madeleine's medical picture as it is easier for the nurses to suction and clear out the gunk (that's a technical term) in her lungs.
- The trach is less intrusive than a normal ventilator tube as it doesn't impact her sinuses and some of her throat/airway. Repeated on/off intubation can cause scarring and other problems.
As with any medical procedure/treatment, there are some negatives as well. While there is some medical risk with the trach, the negatives are more lifestyle issues as there will be additional burden on maintaining and monitoring Madeleine with a trach. I'll go into detail on these issues in a future posting and while they could be significant, they're somewhat inconsequential as we agree with the doctors that from a medical standpoint, Madeleine needs to have a trach. We're obviously disappointed that we have to take this step and admit that Madeleine needs to have medical support for an extended period of time. At the same time, we're comfortable with the fact that this step should be the one that helps get us over the hump and will allow Madeleine to grow and develop. That's essentially the most important thing for Madeleine right now. As she grows and develops, the doctors expect her lung functioning to improve and they expect her hypertension to improve/decrease. Eventually, they will be able to re-attach Madeleine's intestines, thereby eliminating the colostomy bag and she'll also develop to the point where we can begin feeding her without a feeding tube. These goals are all a bit down the line and we can't even begin to put a time frame around them. However, I've listed them to reiterate that the goal of the trach for Madeleine is to allow her to develop so that all of her other issues can be addressed. Furthermore, the trach itself is a temporary step as it will be removed when the doctors determine that she's able to breather on her own. In short: its a step we would prefer to avoid but recognizing the necessity, we're moving forward and expect this to be the step that allows Madeleine to recover and move forward effectively.
I'm sure you may have questions about a trach as it is a fairly uncommon procedure. I'll do my best to post information about how they do the procedure, what it entails, and how long we'll have it as we learn more about it. If you have questions, feel free to research online and/or give us a call. Thanks again for your support. I'm headed to the hospital and I plan on posting additional information later tonight.
Brent
Monday, October 13, 2008
The Roller Coaster Continues
This was supposed to be a positive post about all of the progress that Madeleine has made since being weaned last week. Unfortunately, after a great day two days ago on Saturday, Madeleine took a turn for the worse yesterday. She's stable and okay right now but she had to be intubated (placed on a ventilator) yesterday after struggling most of the day with her oxygen saturation levels. The doctors aren't entirely convinced they know what is going on but they believe the culprit is her lungs and not her pulmonary hypertension. Here's what happened yesterday:
- Madeleine was breathing great all day Saturday and looked great-- we held her and played with her and talked with the doctors about when she could be moved off the ICU floor. The only factor holding Madeleine back was that she was still on high flow nasal canula. Additionally, Madeleine's X-Rays indicated that her left lung was collapsed/obstructed and the assumption was that she had a mucus plug (the technical term I believe is a snot ball or lugie) that was blocking her ability to move air in and out of the left lung. This sounds bad but while it isn't good, its fairly common when coming off a ventilator and the assumption was that it would slowly resolve as Madeleine's health improved.
- On Sunday, the doctors weaned the high flow from 7 liters to 8 liters and a little while later, the nurse noticed that Madeleine's oxygen saturation level was dropping.
- The doctors ordered an X-Ray at noon (the morning X ray was taken at 6AM) and were astonished with the results as the midday X-Ray showed that the left lung was fully ventilated but the right lung was collapsed. It isn't uncommon for different areas of the lung to collapse at different periods but this shift was extremely dramatic and shocking. In fact, the first assumption was that the X-Ray technician had flipped Madeleine over.
- The doctors and nurses began chest percussions (they use little rubber mallets and "pound" on Madeleine's chest and back trying to loosen up the mucus plugs. (It sounds harsh but Madeleine really likes it.) Unfortunately, this didn't work.
- They tried lots of other interventions-- they "tented" her with oxygen and even added nitric oxide to the high flow nasal canula. In the end, nothing could pull her saturation rates up so they made the decision to intubate Madeleine again.
Since she's been intubated, Madeleine has done much better. Both of her lungs are inflated and she's responded to the Chest PT (percussions) very well. Additionally, they've been able to wean some of her vent settings and support. In short: its going much better this time than the last time she was intubated. That being said, this is still a major step back and its going to be at least a few days before we will consider extubation.
Kirsten and I are obviously frustrated and disappointed in this additional setback. At the same time, we're encouraged by Madeleine's will to fight and we're fully expecting her to come back from this setback. (I sound like a broken record, don't I?)
That's all for now. I'll provide further updates tomorrow. Thanks again to everyone.
Brent and Kirsten
PS-- A belated congratulations to Rebecca and Lauren on completing the Chicago marathon on Sunday. Despite a persistent leg injury, Lauren was able to cover 21 miles before wisely dropping our (her knee pain was shooting into her hip.) Rebecca finished in 4:24, beating her target goal by six minutes! They're both an inspiration to Kirsten and I!
- Madeleine was breathing great all day Saturday and looked great-- we held her and played with her and talked with the doctors about when she could be moved off the ICU floor. The only factor holding Madeleine back was that she was still on high flow nasal canula. Additionally, Madeleine's X-Rays indicated that her left lung was collapsed/obstructed and the assumption was that she had a mucus plug (the technical term I believe is a snot ball or lugie) that was blocking her ability to move air in and out of the left lung. This sounds bad but while it isn't good, its fairly common when coming off a ventilator and the assumption was that it would slowly resolve as Madeleine's health improved.
- On Sunday, the doctors weaned the high flow from 7 liters to 8 liters and a little while later, the nurse noticed that Madeleine's oxygen saturation level was dropping.
- The doctors ordered an X-Ray at noon (the morning X ray was taken at 6AM) and were astonished with the results as the midday X-Ray showed that the left lung was fully ventilated but the right lung was collapsed. It isn't uncommon for different areas of the lung to collapse at different periods but this shift was extremely dramatic and shocking. In fact, the first assumption was that the X-Ray technician had flipped Madeleine over.
- The doctors and nurses began chest percussions (they use little rubber mallets and "pound" on Madeleine's chest and back trying to loosen up the mucus plugs. (It sounds harsh but Madeleine really likes it.) Unfortunately, this didn't work.
- They tried lots of other interventions-- they "tented" her with oxygen and even added nitric oxide to the high flow nasal canula. In the end, nothing could pull her saturation rates up so they made the decision to intubate Madeleine again.
Since she's been intubated, Madeleine has done much better. Both of her lungs are inflated and she's responded to the Chest PT (percussions) very well. Additionally, they've been able to wean some of her vent settings and support. In short: its going much better this time than the last time she was intubated. That being said, this is still a major step back and its going to be at least a few days before we will consider extubation.
Kirsten and I are obviously frustrated and disappointed in this additional setback. At the same time, we're encouraged by Madeleine's will to fight and we're fully expecting her to come back from this setback. (I sound like a broken record, don't I?)
That's all for now. I'll provide further updates tomorrow. Thanks again to everyone.
Brent and Kirsten
PS-- A belated congratulations to Rebecca and Lauren on completing the Chicago marathon on Sunday. Despite a persistent leg injury, Lauren was able to cover 21 miles before wisely dropping our (her knee pain was shooting into her hip.) Rebecca finished in 4:24, beating her target goal by six minutes! They're both an inspiration to Kirsten and I!
Thursday, October 9, 2008
As Lee Corso Says...
Not so fast my friend... Madeleine is doing fine but she's not able to be weaned in the aggressive manner that I laid out this morning. They tried weaning her every 8 hours but this morning's X-Ray revealed some collapsed areas in the lung. That's nothing new for Madeleine and it was easily corrected by increasing her flow back to 10 liters. She's now down to 9 liters and is doing fine and the new schedule is to wean 1 liter every 24 hours. That's excruciatingly slow but Madeleine's still moving in the right direction and that's all that matters. (I'll keep repeating that to myself when I get frustrated.)
That's all for now. I do have a very cool picture to post with a neat story-- but I can't post right now. Check back later tonight for some cool stuff.
Brent
That's all for now. I do have a very cool picture to post with a neat story-- but I can't post right now. Check back later tonight for some cool stuff.
Brent
Steady Progress
Last evening, the doctors decided that Madeleine is stable and they're moving rather quickly to get her weaned from the breathing support so that she can be moved out of the CICU. Starting last night at 10PM, the nurses began decreasing the flow (rate of air) that Madeleine is receiving via the high flow nasal canula. She was turned down to 8 liters at 10PM and then went down to 7 liters at 6AM this morning. We're scheduled to go to 6 liters at 2PM and 5liters at 10PM. If all goes well, she'll be at 4 liters tomorrow morning at which point they will likely discuss making the transition from the high flow canula to the traditional nasal canula. If this change is made tomorrow, we think its likely she'll move off the CICU by tomorrow evening and/or Saturday morning. As you might expect, we're cautiously optimistic as we know that Madeleine could have a set back-- no one is immune to setbacks when in an ICU setting. That being said-- Madeleine is really doing great.
That's all for now. Check back for an afternoon update of pictures. Thanks,
Brent
That's all for now. Check back for an afternoon update of pictures. Thanks,
Brent
Wednesday, October 8, 2008
Successful Extubation
Madeleine was extubated last evening and is doing very well breathing without the ventilator. She's still on a high flow nasal canula but all reports this morning are that she's doing well and will be slowly weaned. We're trying not to look too far ahead as we know that Madeleine can always fall backwards, but if all goes according to plan, its possible that Madeleine's stay in the CICU will be coming to an end. (We're likely still days away.) We expect to move from the CICU once she's stable and has been taken off the high flow nasal canula. Rather than go home, we'll likely go the Heart and Kidney Floor-- just down the hallway-- and will then determine a plan to get her home. Again, that's down the road a bit but that's where we're focused.
That's all for now-- all good news. Thanks again for your support.
Brent and Kirsten
That's all for now-- all good news. Thanks again for your support.
Brent and Kirsten
Monday, October 6, 2008
Slight Delay
You didn't really expect Madeleine to make it easy did you? This delay doesn't appear to be a big deal but the doctors are playing it safe after Madeleine spiked a temperature yesterday. We're not exactly sure what happened but yesterday, the nurse noticed she was running a temperature (around 101F/38C). The standard response to a fever in the ICU is to take blood, urine, and respiratory cultures and start a round of IV antibiotics. Madeleine received two antibiotics yesterday and within 6 hours, the fever was gone. The cultures are negative so far and assuming they stay this way, the doctors will discontinue the antibiotics tomorrow (after 48 hours). We're not exactly sure what happened and honestly, as long as it doesn't come back, don't really care.
We're particularly encouraged that this isn't a big deal as there was never a need to increase Madeleine's medical support. In fact, they've continued to slowly wean her off her support. She's close to being off all sedation and the vent settings are nearly weaned to extubation levels. They'll likely test her tonight for her extubation readiness and then will extubate tomorrow. Its not the schedule we were hoping for, but in the grand scheme of things, its not a big setback.
That's all on the medical front. On a related issue, Kirsten has started back at work today-- she was on maternity leave for 12 weeks. I know she's disappointed about going back to work with Madeleine still in the hospital as its not exactly a dream scenario that a new mother envisions. That being said, I just wanted to publicly post my admiration for Kirsten. If you know me, you're fully aware that I'm not the easiest guy to live with-- especially when my routines are thrown out of whack. Despite all of Madeleine's ups and downs, Kirsten has been there as my partner and best friend, keeping me centered and ensuring that our life continues moving forward. She's amazing and I definitely don't say thank you enough. Thanks babe.
Alright, that's all for now. Thanks again for your support. Ideally, you'll see a post tomorrow trumpeting Madeleine's progress.
Brent
We're particularly encouraged that this isn't a big deal as there was never a need to increase Madeleine's medical support. In fact, they've continued to slowly wean her off her support. She's close to being off all sedation and the vent settings are nearly weaned to extubation levels. They'll likely test her tonight for her extubation readiness and then will extubate tomorrow. Its not the schedule we were hoping for, but in the grand scheme of things, its not a big setback.
That's all on the medical front. On a related issue, Kirsten has started back at work today-- she was on maternity leave for 12 weeks. I know she's disappointed about going back to work with Madeleine still in the hospital as its not exactly a dream scenario that a new mother envisions. That being said, I just wanted to publicly post my admiration for Kirsten. If you know me, you're fully aware that I'm not the easiest guy to live with-- especially when my routines are thrown out of whack. Despite all of Madeleine's ups and downs, Kirsten has been there as my partner and best friend, keeping me centered and ensuring that our life continues moving forward. She's amazing and I definitely don't say thank you enough. Thanks babe.
Alright, that's all for now. Thanks again for your support. Ideally, you'll see a post tomorrow trumpeting Madeleine's progress.
Brent
Sunday, October 5, 2008
Still on Target
I'm just posting a quick update to say that Madeleine is still on target for tomorrow morning as she's done very well being weaned from her sedatives as well as from the nitric oxide and vent settings. She's completely off nitric oxide and her vent settings are very close to wean levels. We're not too focused on tomorrow as its completely possible that they'll decide that Madeleine is doing well but could use an extra day of rest before extubation. Still, we're extremely pleased with her progress and look forward to playing with her soon.
Have a good weekend-- wherever you are, we hope the weather is as perfect as it is here in DC. Get out and enjoy it-- it won't last forever. (Unless you live in Hawaii or SoCal-- not cool.)
Brent and Kirsten
PS-- A big shout out to our friends Steve and Becky for their first 10 mile run this morning. Also for my co-worker James-- he made Treasury proud. Last but not least, Rebecca and Lauren-- our two former PAs from the NICU that are running the Chicago Marathon next weekend-- also ran the Army Ten Miler this morning. As soon as I can find the camera cord (a constant struggle in my life), we'll have pictures posted to the blog of everyone!
Have a good weekend-- wherever you are, we hope the weather is as perfect as it is here in DC. Get out and enjoy it-- it won't last forever. (Unless you live in Hawaii or SoCal-- not cool.)
Brent and Kirsten
PS-- A big shout out to our friends Steve and Becky for their first 10 mile run this morning. Also for my co-worker James-- he made Treasury proud. Last but not least, Rebecca and Lauren-- our two former PAs from the NICU that are running the Chicago Marathon next weekend-- also ran the Army Ten Miler this morning. As soon as I can find the camera cord (a constant struggle in my life), we'll have pictures posted to the blog of everyone!
Friday, October 3, 2008
Monday's the Target date
For extubating Madeleine from the ventilator. This is the plan that was laid out this morning during rounds in the CICU. We all know that the adage "the best laid plans of men and mice..." applies to Madeleine wholeheartedly so we're not getting to excited. That being said, she's doing really great. They continue to slowly turn down the nitric oxide and the ventilator settings and she is satting very well. They've discontinued the antibiotics and over the weekend, they hope to get rid of the nitric oxide and sedation. Once that is all gone, the final step is to get her ventilator settings down and ensure that she's able to handle the extubation process. There are tons of issues that could delay us, so we're prepared for delays. However, we are extremely encouraged that the doctors were willing to even discuss dates.
That's all for now. I'll provide daily updates over the weekend. Thanks again for everyone's support.
Brent
That's all for now. I'll provide daily updates over the weekend. Thanks again for everyone's support.
Brent
Thursday, October 2, 2008
Continued Progress
Sorry for the lack of posts-- for the first time in a while, I just didn't have much to report and work took precedence-- the Federal fiscal year ends on 9/30 and things get a little hectic in my office. It was actually nice to be distracted.
In any case, Madeleine has really made a dramatic turn around in the past week. We're still being very cautious as we know that she can turn on a dime but she's done great the past few days. Here are her current settings:
- Dopamine (blood pressure): Was completely weaned yesterday.
- Vecuronium (VEC- the paralytic drug): Was completely weaned two days ago.
- Oxygen: She's down to 50%.
- Nitric Oxide: She's down to 10 mcgs.
- She's still on low doses of Fentanyl and Versed (two sedatives) to ensure she remains calm while on the vent but she's awake portions of the day and calm.
That's pretty much it. Over the next few days, we hope to continue weaning the nitric oxide and we've been warned that the last 5 mcgs can be excruciatingly slow and difficults-- big surprise, eh? Once the nitric is weaned, they'll have to tweak the oxygen a bit further down as well as some of her other vent settings and then we'll discuss extubation. (All of this presupposes that there are no setbacks.) We still haven't talked timeframes with the doctors but Kirsten and I think its possible that she could be extubated early next week. We're not getting our hopes up and honestly don't care how long it takes, but we can't help but start thinking that things are going well.
That's all for now. We'll keep you posted as things continue to progress.
Brent and Kirsten
In any case, Madeleine has really made a dramatic turn around in the past week. We're still being very cautious as we know that she can turn on a dime but she's done great the past few days. Here are her current settings:
- Dopamine (blood pressure): Was completely weaned yesterday.
- Vecuronium (VEC- the paralytic drug): Was completely weaned two days ago.
- Oxygen: She's down to 50%.
- Nitric Oxide: She's down to 10 mcgs.
- She's still on low doses of Fentanyl and Versed (two sedatives) to ensure she remains calm while on the vent but she's awake portions of the day and calm.
That's pretty much it. Over the next few days, we hope to continue weaning the nitric oxide and we've been warned that the last 5 mcgs can be excruciatingly slow and difficults-- big surprise, eh? Once the nitric is weaned, they'll have to tweak the oxygen a bit further down as well as some of her other vent settings and then we'll discuss extubation. (All of this presupposes that there are no setbacks.) We still haven't talked timeframes with the doctors but Kirsten and I think its possible that she could be extubated early next week. We're not getting our hopes up and honestly don't care how long it takes, but we can't help but start thinking that things are going well.
That's all for now. We'll keep you posted as things continue to progress.
Brent and Kirsten
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