Sunday, September 30, 2007
Quick One
We just got the news that Andrew had his eyes open and was looking around....we're headed in shortly to see if we can catch him awake.
Saturday, September 29, 2007
Delayed a Bit
I'm guessing people might be anxious for an update, so I'll post this earlier than normal. The day didn't go quite as expected, because the unit was quite busy with other new and sick babies. The doctors didn't get around to ordering the changes in Andrew's medication until 6pm, so he spent the entire day exactly like he's spent the last month...asleep and paralyzed.
At 6, they finally turned off the paralytic. They left the sedation going, which kept him asleep, but now he can move. He's been moving slightly....mostly his fingers. We're not sure what the plan is for lessening the sedation or letting him wake up entirely. We'll definitely try to be there if they tell us before it happens.
The next few days might be volatile, as we don't know how he's going to react to waking up, so we'll also be calling in to check on him more often. I don't know that I'll be posting any more frequently, since things likely won't change very quickly, but I'll make sure to write something when we see how he's going to behave.
That's it for now. More tomorrow, then more when he's awake and alert.
At 6, they finally turned off the paralytic. They left the sedation going, which kept him asleep, but now he can move. He's been moving slightly....mostly his fingers. We're not sure what the plan is for lessening the sedation or letting him wake up entirely. We'll definitely try to be there if they tell us before it happens.
The next few days might be volatile, as we don't know how he's going to react to waking up, so we'll also be calling in to check on him more often. I don't know that I'll be posting any more frequently, since things likely won't change very quickly, but I'll make sure to write something when we see how he's going to behave.
That's it for now. More tomorrow, then more when he's awake and alert.
Liking the Tummy
Andrew's doing well so far in his new position. According to the x-rays, his left lung has inflated more, but isn't yet over-inflated. The right lung also seems to still be an appropriate size, and his numbers (volume, CO2, and oxygen saturation) have all been good. Now that his left lung is nearing normal size, it's time for the second part of the plan. They're going to try and let him wake up tomorrow (Saturday) morning. They'll definitely do it slowly and keep a close eye on him, as he's likely to be groggy and maybe even grumpy after being sedated for so long. They'll reduce the paralytic first, so he'll be able to move in his sleep, then start turning back the sedation until he wakes up.
Tomorrow is a relatively important day for him, as the next steps will depend on how he reacts to waking up. There are really three options that I can think of:
Tomorrow is a relatively important day for him, as the next steps will depend on how he reacts to waking up. There are really three options that I can think of:
- He wakes up and eventually calms down and does well (both emotionally and physically), and his lung stays a normal size. He's definitely allowed to be a bit grumpy, but can't stay that way long-term. In this case, they would start to wean the ventilator back to minimal settings over the next few days.
- He wakes up and the additional force of breathing on his own causes the left lung to hyper-inflate. In this case, they would almost definitely sedate him again, then probably move him back onto his left side until the lung collapsed again. Then they'd try to schedule a lobectomy to remove the upper portion of his left lung.
- He wakes up and simply isn't able to be awake and relaxed at all. If his lungs cause problems in a way that isn't expected, if the right lung collapses as soon as he wakes up, or if that constricted bronchus generates significant difficulty for him, he will likely be behaviorally difficult and medically unstable. This would include any bad diagnosis other than a hyper-inflated left lung, for which they have a solution....if it's a problem without a solution, then we'll be very close to running out of options entirely. He needs to be able to be awake and stable...keeping him sedated and paralyzed long-term isn't really an option.
Friday, September 28, 2007
A New Position!
Here's the most obvious evidence of the new plan...a new position for Andrew.
The swelling in his face will start to subside when they let him wake up.
Mostly covered, but still cute.
Thursday Wrap-Up
Sorry for the uninformative post last night. I don't really like to write anything unless I'm awake and alert enough to give a relatively good summary of the days events, but there's also some pressure to get something posted every night....I certainly don't want to make anyone worry unnecessarily.
Andrew's doing pretty well with the new plan. They moved him onto his stomach and are letting the lung slowly reinflate. We saw an x-ray from yesterday morning and it had already expanded a bit. One indicator of how well his lungs are working is the total volume of air that he inhales and exhales with each breath...low volumes mean congestion or "air trapping," which can cause hyperinflation. His volumes have been good and his CO2 levels have been better than the last couple of weeks. They turned down his breathing rate slightly (to 30 from 32 breaths per minute) and will be able to come down further with additional positive test results. They'll also be getting x-rays to follow the progress of the left lung.
One of the other issues that cropped up on Wednesday was a blood test that showed some signs of infection. He hasn't really had any infections that have gotten to his blood before, so they put him back on antibiotics and took various cultures (mucus, blood, urine, etc.) to see where the infection was developing. So far the only positive culture has been in his urine, so he might have a little urinary tract infection. Hopefully the antibiotics will nip it in the bud.
The doctors had another discussion about additional procedures/techniques that may solve the problem with his bronchus, and nobody had any new ideas. That means we're moving forward with the current plan, and we'll see how he does with it. If his lung inflates (fully, but not too much) in the next few days, they'll most likely let him wake up and see if he can continue that stability.
Andrew's doing pretty well with the new plan. They moved him onto his stomach and are letting the lung slowly reinflate. We saw an x-ray from yesterday morning and it had already expanded a bit. One indicator of how well his lungs are working is the total volume of air that he inhales and exhales with each breath...low volumes mean congestion or "air trapping," which can cause hyperinflation. His volumes have been good and his CO2 levels have been better than the last couple of weeks. They turned down his breathing rate slightly (to 30 from 32 breaths per minute) and will be able to come down further with additional positive test results. They'll also be getting x-rays to follow the progress of the left lung.
One of the other issues that cropped up on Wednesday was a blood test that showed some signs of infection. He hasn't really had any infections that have gotten to his blood before, so they put him back on antibiotics and took various cultures (mucus, blood, urine, etc.) to see where the infection was developing. So far the only positive culture has been in his urine, so he might have a little urinary tract infection. Hopefully the antibiotics will nip it in the bud.
The doctors had another discussion about additional procedures/techniques that may solve the problem with his bronchus, and nobody had any new ideas. That means we're moving forward with the current plan, and we'll see how he does with it. If his lung inflates (fully, but not too much) in the next few days, they'll most likely let him wake up and see if he can continue that stability.
Begging Off
Forgive me again for the delay, but I'll get to posting tomorrow morning. Andrew's doing fine and is behaving very well on his stomach.
Thursday, September 27, 2007
CAT Scan:The Results Show
Yesterday I described the ideal CT results. Today we got those results, and they were somewhat less than ideal. On the good side, all the major anatomical moves happened as expected....his left lung has collapsed, his heart has moved toward the midline, and his right lung has inflated well. However, his right bronchus is still being compressed by the pulmonary artery. We took a look at the scan results with a doctor, and the compression is quite obvious.
So.....our options are dwindling a bit. Some of the procedures that have been considered and discarded include inserting a stent (rigid tube) into the airway and/or physically lifting and moving the heart by attaching it to the chest wall. There are significant negatives to the stent approach, and Andrew's anatomy won't accommodate physical movement of the artery.
The current state of the bronchus isn't necessarily an awful thing. Obviously it's not as we had hoped, but his right lung is doing well recently, even with the compression. Moving forward, that bronchus could grow with his lungs and body, and provide enough airway to allow a normal breathing pattern. On the other hand, the pulmonary artery could grow even larger, compressing the bronchus entirely and cutting off air to his one good lung. People can live with compressed bronchi, but he has the unfortunate situation of not having a "good" lung to back it up.
Speaking of his "bad" lung, the purpose of the anticipated lobectomy was twofold. First, to relieve the compression on his right bronchus, and second, to allow his heart to shift and his right lung to inflate appropriately. Since the compression hasn't been solved by this pseudo-lobectomy (keeping him on his side for three weeks), they want to be especially careful before deciding to remove any portion of that left lung....the benefit is no longer quite as obvious. So, in order to confirm 1) that the left lung isn't doing anything to help, and 2) that it will always cause problems if given the opportunity, they have come up with a new short-term plan of action.
They are going to move Andrew off of his side and allow his left lung to slowly reinflate. They've decided that the best position in which to do this gently is with him on his stomach, so they've rolled him over on his belly. Over the next couple days-to-weeks, his lung should slowly recover from being compressed. During this portion, they'll keep him sedated and paralyzed for maximum breathing consistency. Once the lung is reinflated, then they'll allow him to start waking up again, because we also need to confirm that it can stay normal while he's awake. Assuming it does, then we would be back to where we were a month ago...on low ventilator settings and pushing toward another try at extubation. However, if the left lung hyperinflates at any point in the process...while sedated, while awake, or while trying to extubate...they'll have confirmation that the lung is continuing to cause problems, and they'll most likely remove the upper lobe.
At this point, Andrew has definitely run an uncommon course and has proven himself to have a unique anatomy and relatively rare combination of issues. When we first learned about CDH and the lung development issues that are associated with it, we certainly wouldn't have predicted we'd be discussing removing his stunted lung because it was too large. At this point, the doctors are running out of good options for obvious solutions. There are still a few clear paths toward possible recovery, including the new plan described above. Beyond that, the doctors and surgeons are brainstorming for additional ideas, but there aren't a whole lot of stones left unturned.
We'll see how the next couple of weeks go....we're certainly hoping he responds well to the new position so that they can remove the sedation and let him wake up again...we miss him.
So.....our options are dwindling a bit. Some of the procedures that have been considered and discarded include inserting a stent (rigid tube) into the airway and/or physically lifting and moving the heart by attaching it to the chest wall. There are significant negatives to the stent approach, and Andrew's anatomy won't accommodate physical movement of the artery.
The current state of the bronchus isn't necessarily an awful thing. Obviously it's not as we had hoped, but his right lung is doing well recently, even with the compression. Moving forward, that bronchus could grow with his lungs and body, and provide enough airway to allow a normal breathing pattern. On the other hand, the pulmonary artery could grow even larger, compressing the bronchus entirely and cutting off air to his one good lung. People can live with compressed bronchi, but he has the unfortunate situation of not having a "good" lung to back it up.
Speaking of his "bad" lung, the purpose of the anticipated lobectomy was twofold. First, to relieve the compression on his right bronchus, and second, to allow his heart to shift and his right lung to inflate appropriately. Since the compression hasn't been solved by this pseudo-lobectomy (keeping him on his side for three weeks), they want to be especially careful before deciding to remove any portion of that left lung....the benefit is no longer quite as obvious. So, in order to confirm 1) that the left lung isn't doing anything to help, and 2) that it will always cause problems if given the opportunity, they have come up with a new short-term plan of action.
They are going to move Andrew off of his side and allow his left lung to slowly reinflate. They've decided that the best position in which to do this gently is with him on his stomach, so they've rolled him over on his belly. Over the next couple days-to-weeks, his lung should slowly recover from being compressed. During this portion, they'll keep him sedated and paralyzed for maximum breathing consistency. Once the lung is reinflated, then they'll allow him to start waking up again, because we also need to confirm that it can stay normal while he's awake. Assuming it does, then we would be back to where we were a month ago...on low ventilator settings and pushing toward another try at extubation. However, if the left lung hyperinflates at any point in the process...while sedated, while awake, or while trying to extubate...they'll have confirmation that the lung is continuing to cause problems, and they'll most likely remove the upper lobe.
At this point, Andrew has definitely run an uncommon course and has proven himself to have a unique anatomy and relatively rare combination of issues. When we first learned about CDH and the lung development issues that are associated with it, we certainly wouldn't have predicted we'd be discussing removing his stunted lung because it was too large. At this point, the doctors are running out of good options for obvious solutions. There are still a few clear paths toward possible recovery, including the new plan described above. Beyond that, the doctors and surgeons are brainstorming for additional ideas, but there aren't a whole lot of stones left unturned.
We'll see how the next couple of weeks go....we're certainly hoping he responds well to the new position so that they can remove the sedation and let him wake up again...we miss him.
More Later
I fell asleep halfway through tonight's post, and I'd rather go to bed than finish it right now. I'll finish it and post it in the morning, but I wanted to get something out there. Andrew's stable and comfortable now (and has been for days)....talk to you in a few hours.
Wednesday, September 26, 2007
A New CAT
Well, the plan changed a bit today. Instead of doing a bronchoscopy, the doctors and surgeons got together and decided they'd rather have a new CAT scan. This scan should provide a clear view of his anatomy and give an indication of whether the artery-constricting-a-bronchus issue is still a problem. Ideally, the CT will show a collapsed left lung, a heart shifted toward the midline, a well-inflated right lung, and a pulmonary artery that is nowhere near his perfectly round bronchus. I won't get into all the other possibilities, because none of them are particularly expected, but other findings may change their course of action. Assuming they find everything in its appropriate position, they'll schedule the surgery for later this week or next week.
They managed to schedule the CT for this afternoon (around 5pm). They had to wheel him down the hall to the CT machine, perform the test, and then wheel him back with all of his machines in tow. He behaved well throughout the process, and continues to be stable and have good numbers. In addition, he got a room upgrade when he returned the unit....he's back in the big room that he had several weeks ago. Last time he was only there for two days before being moved out, so we won't get our hopes up, but it's nice to be able to spread out a bit. There's plenty of room for all his machinery, plus space on both sides of his bed. We've been staring at the back of his head for a few weeks (the machines took up the other side of the bed), so now we have better viewing angles.
Even though the CT was done today, the results won't be back right away....they have to be reviewed by a radiologist and then given to the doctors. Last time it took two days, though we hope to hear back sooner than that. More info as we get it....
They managed to schedule the CT for this afternoon (around 5pm). They had to wheel him down the hall to the CT machine, perform the test, and then wheel him back with all of his machines in tow. He behaved well throughout the process, and continues to be stable and have good numbers. In addition, he got a room upgrade when he returned the unit....he's back in the big room that he had several weeks ago. Last time he was only there for two days before being moved out, so we won't get our hopes up, but it's nice to be able to spread out a bit. There's plenty of room for all his machinery, plus space on both sides of his bed. We've been staring at the back of his head for a few weeks (the machines took up the other side of the bed), so now we have better viewing angles.
Even though the CT was done today, the results won't be back right away....they have to be reviewed by a radiologist and then given to the doctors. Last time it took two days, though we hope to hear back sooner than that. More info as we get it....
Monday, September 24, 2007
Long Day
I left the house at 5:15 this morning and got back home at 9:30 tonight. In between, I drove to LA, worked for 7-something hours, drove back, and then went to the hospital. To give you an idea of how tired I am, I'm going to bed as soon as I finish writing this, around 11pm.
There's not much change to report at the hospital. Andrew's still doing well, though he started to move a bit today. They had to increase his paralytic dosage a bit, but he was still moving while we were there. They may have to increase it again in the next few days.
The surgeons are trying to schedule the procedure on his lung, but first they want to get a bronchoscopy. This involves inserting a small camera down his airway, taking a look at the trachea/bronchus walls on the way down. We're not sure why they need it, but this test isn't difficult and should provide some additional information. It would let them know if he had a floppy airway, another constriction, a weak point in the wall, any scar tissue, etc. I don't think they're expecting any of these to be the case, but we're certainly not complaining about any extra testing before starting an irreversible surgery.
They'll try to do the bronchoscopy later this week....we'll probably know for sure tomorrow. After they finish the bronchoscopy, they'll try to schedule the other surgery.
There's not much change to report at the hospital. Andrew's still doing well, though he started to move a bit today. They had to increase his paralytic dosage a bit, but he was still moving while we were there. They may have to increase it again in the next few days.
The surgeons are trying to schedule the procedure on his lung, but first they want to get a bronchoscopy. This involves inserting a small camera down his airway, taking a look at the trachea/bronchus walls on the way down. We're not sure why they need it, but this test isn't difficult and should provide some additional information. It would let them know if he had a floppy airway, another constriction, a weak point in the wall, any scar tissue, etc. I don't think they're expecting any of these to be the case, but we're certainly not complaining about any extra testing before starting an irreversible surgery.
They'll try to do the bronchoscopy later this week....we'll probably know for sure tomorrow. After they finish the bronchoscopy, they'll try to schedule the other surgery.
Fight On
Our internet access is back up, so I don't have to post this one from my BlackBerry, as I did last night. Unfortunately, I still don't have much in the way of news to report.
Andrew has been behaving well...there haven't been any major changes on his settings. He's stable enough that they're going twelve hours between blood gas tests, which is up from 4-6 hours. His feeds are staying at a pretty low volume, partly because he doesn't seem to be moving much through his system. That could be partly due to the sedation/paralysis, and we certainly hope it's not another digestive blockage. We'll see how he progresses over the next couple of days.
The surgeon came by and took a look at him this morning. We're not sure what she was looking for or whether anything was decided...the nurse didn't know and we didn't talk to a doctor or social worker today. This surgeon is not the one who did his previous surgeries, because the lung resection requires a different specialty. She's a cardiothoracic (heart and other chest organs) surgeon, and will be assisted by another CT surgeon. Since they're focusing entirely on the lung and ignoring the stomach for now, it should be a relatively straightforward procedure...not short or easy, but straightforward. From what we've heard, they'll have to dissect out the portion of the lung that is to be removed without affecting the blood flow in the arteries going past it. The lower lobe of the lung will be left intact, so they want to make sure it has all the blood it needs. The second surgeon will be there mainly to assist and to deal with any issues that crop up (bleeding, etc).
We drove up to LA on Saturday afternoon for a USC football game. We were somewhat hesitant to leave home, because of the long time commitment, the distance from SD, the notoriously bad cellular coverage at the Coliseum, the every-three-hours logistical considerations, and a boatload of work that I have to finish by Monday. Despite the many reasons to skip it, I'm very happy we went. We had a great time with D's brother and girlfriend, really enjoyed the game, and managed to get there and back without any major incidents, either on the road or at the hospital. It was nice to get away, if even for the afternoon.
Andrew has been behaving well...there haven't been any major changes on his settings. He's stable enough that they're going twelve hours between blood gas tests, which is up from 4-6 hours. His feeds are staying at a pretty low volume, partly because he doesn't seem to be moving much through his system. That could be partly due to the sedation/paralysis, and we certainly hope it's not another digestive blockage. We'll see how he progresses over the next couple of days.
The surgeon came by and took a look at him this morning. We're not sure what she was looking for or whether anything was decided...the nurse didn't know and we didn't talk to a doctor or social worker today. This surgeon is not the one who did his previous surgeries, because the lung resection requires a different specialty. She's a cardiothoracic (heart and other chest organs) surgeon, and will be assisted by another CT surgeon. Since they're focusing entirely on the lung and ignoring the stomach for now, it should be a relatively straightforward procedure...not short or easy, but straightforward. From what we've heard, they'll have to dissect out the portion of the lung that is to be removed without affecting the blood flow in the arteries going past it. The lower lobe of the lung will be left intact, so they want to make sure it has all the blood it needs. The second surgeon will be there mainly to assist and to deal with any issues that crop up (bleeding, etc).
We drove up to LA on Saturday afternoon for a USC football game. We were somewhat hesitant to leave home, because of the long time commitment, the distance from SD, the notoriously bad cellular coverage at the Coliseum, the every-three-hours logistical considerations, and a boatload of work that I have to finish by Monday. Despite the many reasons to skip it, I'm very happy we went. We had a great time with D's brother and girlfriend, really enjoyed the game, and managed to get there and back without any major incidents, either on the road or at the hospital. It was nice to get away, if even for the afternoon.
Sunday, September 23, 2007
The Same
Our internet is down, and has been since this morning. This makes it hard to blog, and especially hard to work...let's hope it's better by tomorrow.
For now, I'll keep it simple. Andrew was pretty much the same today. He was looking good when we saw him this morning, and he's had an up-and-down day. In the end he's back to where he was yesterday, so we've essentially broken even.
No word on when the surgery will be. Hope everyone's having a nice weekend.
For now, I'll keep it simple. Andrew was pretty much the same today. He was looking good when we saw him this morning, and he's had an up-and-down day. In the end he's back to where he was yesterday, so we've essentially broken even.
No word on when the surgery will be. Hope everyone's having a nice weekend.
Friday, September 21, 2007
Not-So-Cute Pictures
Andrew's all propped up appropriately, wearing new socks and a new blanket.
A smile for the camera.
His face and head are probably the most swollen.
No, he hasn't developed a cleft palate. His tube pulls up on his lip a bit, which is okay since he doesn't have teeth. Under the tape, there's moleskin to help protect his lip from breaking down.
A Bit More Info
I'm going to try and get some sleep tonight, so perhaps if I post now I can crash on the couch without guilt. Andrew had a pretty good day today. His numbers were up and down, but relatively stable and mostly good.
While we didn't have a full family conference, we did speak briefly with the doctor. They still don't have a date for his surgery, but they know which surgeons will be doing it. They're going to focus on the lung first, then do the stomach valve surgery later...they don't want to open two incisions at once. They'll be removing only the upper lobe, and trying to leave the lower lobe (and associated blood vessels) completely intact.
Because they'll have to flip him over for the surgery (left side up), the doctors were concerned that his left lung could once again over-inflate and cause the right lung to collapse. They considered putting him back on ECMO before the surgery, so that they'd have a way to oxygenate him if his good lung collapsed. Fortunately, speaking with the surgeons, they have an alternative; they'll thread another tube down next to the current one, into the left bronchus (airway to the left lung), and then inflate a small balloon on the end. This will prevent the lung from hyperinflating. It's still possible that he could need ECMO again at some point, but that would only be if he had trouble self-oxygenating after the surgery. As long as the right lung works as they expect it to, that should be left as a just-in-case backup.
Once the surgery is complete, then they'll turn down the sedation and let Andrew wake up again. Until then, they're worried that he would hyperinflate his lung if he woke up. Being awake and letting him move will help with his swelling, promote good circulation, and allow him to be extra-cute again. As the "before," I'll post a couple of shots from this week. We'll ask more questions and get some more surgery information as soon as we have a meeting....they're trying to schedule some time with both the neonatalogist and the surgeon.
I'm not sure what our schedule's going to be like this weekend, so don't count on timely posts.
While we didn't have a full family conference, we did speak briefly with the doctor. They still don't have a date for his surgery, but they know which surgeons will be doing it. They're going to focus on the lung first, then do the stomach valve surgery later...they don't want to open two incisions at once. They'll be removing only the upper lobe, and trying to leave the lower lobe (and associated blood vessels) completely intact.
Because they'll have to flip him over for the surgery (left side up), the doctors were concerned that his left lung could once again over-inflate and cause the right lung to collapse. They considered putting him back on ECMO before the surgery, so that they'd have a way to oxygenate him if his good lung collapsed. Fortunately, speaking with the surgeons, they have an alternative; they'll thread another tube down next to the current one, into the left bronchus (airway to the left lung), and then inflate a small balloon on the end. This will prevent the lung from hyperinflating. It's still possible that he could need ECMO again at some point, but that would only be if he had trouble self-oxygenating after the surgery. As long as the right lung works as they expect it to, that should be left as a just-in-case backup.
Once the surgery is complete, then they'll turn down the sedation and let Andrew wake up again. Until then, they're worried that he would hyperinflate his lung if he woke up. Being awake and letting him move will help with his swelling, promote good circulation, and allow him to be extra-cute again. As the "before," I'll post a couple of shots from this week. We'll ask more questions and get some more surgery information as soon as we have a meeting....they're trying to schedule some time with both the neonatalogist and the surgeon.
I'm not sure what our schedule's going to be like this weekend, so don't count on timely posts.
Sorry I'm Late
Oops...I just realized I forgot to post last night. I was caught up in lots of work and half-asleep by the time I stumbled to bed, only to get up three hours later for a conference call.
Andrew's still on the conventional ventilator and he's been weaned a bit on his breathing rate. He continues to have little snits that require some intervention (turning up his oxygen, temporarily upping his rate, or "bagging" him), but he's recovering pretty well from them. We were able to help bathe him yesterday, using a washcloth and a warm bowl of water. He tolerated it well and it was nice to 1) have him clean, and 2) help out with a task like that. He's been getting 'bathed' every few days, but we haven't been involved to this degree before, especially not while he's been sedated.
He spit up again yesterday morning, causing them to lower his feeding volumes again. They're going to hold him steady at 6cc per hour until after his surgery. While they could probably increase it again safely, at least a bit, they want to be conservative while he's sedated and could possibly breathe some of it in....when he's awake, it's much easier for him to cough out, and poses less of a risk.
We didn't meet with the doctor as planned, because they haven't had a chance to talk to the surgeons yet. Once they figure out when his surgery will be, we'll have a longer meeting to talk about the details.
Andrew's still on the conventional ventilator and he's been weaned a bit on his breathing rate. He continues to have little snits that require some intervention (turning up his oxygen, temporarily upping his rate, or "bagging" him), but he's recovering pretty well from them. We were able to help bathe him yesterday, using a washcloth and a warm bowl of water. He tolerated it well and it was nice to 1) have him clean, and 2) help out with a task like that. He's been getting 'bathed' every few days, but we haven't been involved to this degree before, especially not while he's been sedated.
He spit up again yesterday morning, causing them to lower his feeding volumes again. They're going to hold him steady at 6cc per hour until after his surgery. While they could probably increase it again safely, at least a bit, they want to be conservative while he's sedated and could possibly breathe some of it in....when he's awake, it's much easier for him to cough out, and poses less of a risk.
We didn't meet with the doctor as planned, because they haven't had a chance to talk to the surgeons yet. Once they figure out when his surgery will be, we'll have a longer meeting to talk about the details.
Thursday, September 20, 2007
Back to Basics
Andrew was switched back to the conventional ventilator today. They started him off at standard full-sedation settings, so it's giving him 30 breaths per minute. They'll slowly wean as he has good gases, though they can only wean so far while he's sedated. Getting him off the hi-fi hopefully will make it less critical that he's completely paralyzed, as breathing above the vent is much more disruptive to the hi-fi. They still won't let him wake up completely, but perhaps they won't have to increase his dosage as much as they did last week.
They're continuing to increase his feeds, and are now going up every six hours, instead of every twelve hours. He's at 11cc per hour right now....advancing at the same rate, he could be at full feeds in three days.
We have a meeting with the doctor tomorrow, where we'll hopefully get more details, but we got a quick update today. It appears that they're leaning strongly toward removal of a portion of his left lung...how much is unclear. They'd also like to do the stomach valve surgery (Nissen fundoplication) at the same time. They're talking to the surgeons to see who's available for the surgery, which could happen as early as next week.
They're continuing to increase his feeds, and are now going up every six hours, instead of every twelve hours. He's at 11cc per hour right now....advancing at the same rate, he could be at full feeds in three days.
We have a meeting with the doctor tomorrow, where we'll hopefully get more details, but we got a quick update today. It appears that they're leaning strongly toward removal of a portion of his left lung...how much is unclear. They'd also like to do the stomach valve surgery (Nissen fundoplication) at the same time. They're talking to the surgeons to see who's available for the surgery, which could happen as early as next week.
Thank You
I would like to once again thank everyone for your support and generosity. At this point, we've received cards, emails, blog comments, voicemails, flowers, fruit, gas cards, restaurant gift certificates, cookies, brownies, frozen food, baby socks, teddy bears, hand-knitted hats, freshly-jarred conserve, cash, frames, blankets, toys, and other assorted baby and/or consolatory gifts. Multiple donations have been made in honor of my Yia-Yia and Andrew to Rady Children's Hospital and Cherubs, a CDH support and research group. We greatly appreciate each and every one of these generous gifts and until we get around to writing thank you cards, please know that we have received and are very grateful for them all. Your originality, kindness, and love know no bounds, and we are lucky to have you.
I'm sorry that this blog has been our only avenue of communication to most of you, and I hope you understand the logistical (and emotional) difficulty in keeping in direct contact with everyone. We know you're all thinking of us, and we're thinking of you all as well. We look forward to the day when Andrew can meet you in person, though let's hope he's still too young to thank you personally at that point. I'll do it for him....thank you!
I'm sorry that this blog has been our only avenue of communication to most of you, and I hope you understand the logistical (and emotional) difficulty in keeping in direct contact with everyone. We know you're all thinking of us, and we're thinking of you all as well. We look forward to the day when Andrew can meet you in person, though let's hope he's still too young to thank you personally at that point. I'll do it for him....thank you!
Wednesday, September 19, 2007
Ask Drew: Music
these (drool!), he'll have to make do with his cheap little player.
At other times, he listens to a cassette tape in a NICU-supplied tape player or calming jungle sounds from a "waterfall soother." That's also NICU-supplied, but we have an exact duplicate waiting at home in his crib.
At other times, he listens to a cassette tape in a NICU-supplied tape player or calming jungle sounds from a "waterfall soother." That's also NICU-supplied, but we have an exact duplicate waiting at home in his crib.
Night Update
I've been writing a lot to answer questions.....please keep them coming! Hopefully that means you'll forgive me for not having a lot to say about Andrew. He's almost entirely the same....up and down on his settings, but mostly down (in a good way). He's past the "minimal" settings they decided upon a few days ago, which means he needs even less support than they were expecting. He's still sedated, paralyzed, and on the hi-fi vent, which will likely be the case for at least several more days.
The doctors had their meeting this morning, abbreviated a bit due to a new influx of patients, but they didn't discuss Andrew for very long. They're happy with his progress and plan more of the same until they're ready for surgery. We'll have a family conference with the doctor on Thursday, where we'll have a chance to ask more questions, get some details, and talk about surgery schedules.
The doctors had their meeting this morning, abbreviated a bit due to a new influx of patients, but they didn't discuss Andrew for very long. They're happy with his progress and plan more of the same until they're ready for surgery. We'll have a family conference with the doctor on Thursday, where we'll have a chance to ask more questions, get some details, and talk about surgery schedules.
Ask Drew: Mommy
- Marianne said...
Sure would like to hear from Danielle. Just thinking of you sweetie and wondering how you are doing?? Are you back to work full-time, part-time?? Are you getting rest? Are you sleeping at all!? How are you holding up?
- Sorry to give such one-sided commentary....I don't think she's up for blogging quite yet.
School started three weeks ago, and D is teaching part-time. She teaches every other day, which means Monday/Wednesday/Friday this week, and Tuesday/Thursday next week. It's good to have something to do besides sit around and think, and is thus a good distraction. She likes the classes she's teaching and the schedule is great. However, it's also hard not to be distracted at work, as we have both discovered.
It's pretty obvious from my posting times that I don't sleep much, but D is trying to make her days off work for her. She sleeps in a bit when she can and takes naps when she can. She needs to, because it's impossible to get "normal" sleep when you have to wake up every few hours. She's been a real trouper and has filled the freezer to overflowing. Once she's awake, it's often hard to go back to sleep, especially if we've gotten less-than-happy news from Andrew's nurse.
I try to sleep in at least one day a week (usually Saturday) to catch up a bit on my missed opportunities....every other day, I'm up early to be on phone calls, at the hospital in the late afternoon, and working on emails and technical stuff all night. That's when I'm not traveling, which I'm doing more and more often in recent weeks. But enough about me.
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I was wondering what type of music/recordings is Andrew listening to?