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.
Sep 27, 2007
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.
Sep 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....
Sep 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.
Sep 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.
Sep 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.
Sep 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!
Sep 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.
Sep 18, 2007
Ask Drew: Feeding
- Leigh said...
Hi J & D. Why is the nutrient mixture bad for the liver and kidneys? Does he receive some milk as well?
There are two other drips that also contain glucose, running at 1cc per hour each. That means the remaining volume (15cc) has to be made up somehow. The solution is TPN, a bag of yellow nutrients including salts, glucose, amino acids, and vitamins. This is dripped directly into his bloodstream through one of his lines. Since it isn't exactly the natural process of providing nutrients to the body, it can cause problems with the liver, including cholestasis due to gallstones. This isn't an immediate threat, but long-term use of TPN can cause problems. It's different with every child and not necessarily irreversible, but it's definitely better to switch to milk as soon as possible. They're not worried about these problems right now, especially not enough to risk the reflux that could be caused by too much milk. They plan on going to about half-feeds (12-13cc per hour) and holding stable until they can do the stomach valve surgery.
Holding Steady
Another episode in the morning, giving way to a long, stable day. He's on minimal ventilator settings and pretty low oxygen. They're continuing to increase his feedings....I believe they're up to 8cc per hour at this point. They've also had to increase his dosage of sedative and paralytic during the last week or so, as he's started to stir a few times and began breathing over the ventilator. They're not anywhere near maximum dosages, but we hope they'll be able to stay steady until they have the opportunity to wean his medications. All the doctors meet on Tuesdays to discuss the various patients, and I'm guessing Andrew will be a big topic of conversation this week. Perhaps we'll know more tomorrow or the day after.
Since I don't have a whole lot of current information to discuss, does anyone have questions? Confused by anything? Forgotten a medical term? Need something explained in a different manner? Let me know in a comment, and I'll post all the answers over the next few days. It's okay to be curious about insignificant stuff....nothing is off limits.
Since I don't have a whole lot of current information to discuss, does anyone have questions? Confused by anything? Forgotten a medical term? Need something explained in a different manner? Let me know in a comment, and I'll post all the answers over the next few days. It's okay to be curious about insignificant stuff....nothing is off limits.
Sep 17, 2007
Answers
Just a quick post to answer a question left in the comments....
As an aside, I'd appreciate it when anonymous posters provide a name or some indication of who they are when leaving comments. I love answering questions and invite anyone to ask, but my curiosity runs wild when I don't know who particular comments are from. Thank you all for your wonderful comments to this point, and I hope they continue.
- Anonymous said...
You refer to how big Andrew is quite a lot.....how big is he?
As an aside, I'd appreciate it when anonymous posters provide a name or some indication of who they are when leaving comments. I love answering questions and invite anyone to ask, but my curiosity runs wild when I don't know who particular comments are from. Thank you all for your wonderful comments to this point, and I hope they continue.
Stable
Today was very similar to the last few days, as far as Andrew is concerned. He had a bit of a rough morning, but recovered quickly and is back at minimal ventilator settings. The x-ray showed a successfully collapsed left lung, and he's continued to demonstrate that he can be stable when he behaves himself. The hi-fi vent isn't conducive to an awake, active baby...especially one as big as Andrew....so they'll keep him sedated at least as long as he's on this ventilator. I'm not sure what the plan will be if they switch him back to a conventional vent, but I wouldn't be surprised if he stays sedated until they attempt a more permanent solution.
He's now at 5cc per hour on his feedings, and will continue to increase by 1cc every 12 hours. While the bag of nutrients that makes up the rest of his diet isn't healthy for the liver and kidneys long-term, it's more important that he keeps his food down and prevents possible inhalation of any spit-ups. They'll go up to about half-feeds (~12cc per hour) and then pause until they schedule a more permanent digestive solution (stomach valve surgery).
No exact schedule yet...we'll talk to the doctors later this week and figure out exactly what happens next. It's the start of a new work-week, and I'm already starting off the only way I know how....tired. Hope everyone has a nice week.
He's now at 5cc per hour on his feedings, and will continue to increase by 1cc every 12 hours. While the bag of nutrients that makes up the rest of his diet isn't healthy for the liver and kidneys long-term, it's more important that he keeps his food down and prevents possible inhalation of any spit-ups. They'll go up to about half-feeds (~12cc per hour) and then pause until they schedule a more permanent digestive solution (stomach valve surgery).
No exact schedule yet...we'll talk to the doctors later this week and figure out exactly what happens next. It's the start of a new work-week, and I'm already starting off the only way I know how....tired. Hope everyone has a nice week.
Sep 16, 2007
Stable and Comfortable
No major updates since yesterday. He's back down to almost-minimal settings on the hi-fi ventilator, but they're in no hurry to switch him to a conventional vent. His oxygen goes up and down as necessary, but he's generally been behaving well. They've upped his feedings to 3cc per hour and will continue the increases in the days to come.
I don't have a whole lot else to write, so I'll leave this as a particularly short post. I hope everyone's having a good weekend.
I don't have a whole lot else to write, so I'll leave this as a particularly short post. I hope everyone's having a good weekend.
Sep 14, 2007
Roller Coaster
Andrew had a great night last night, and then a not-so-great morning. After getting down to minimal settings and flirting with going back to the conventional ventilator, he sent his CO2 shooting upward and had to have his ventilator turned back up. He was on high oxygen, pressure, and amplitude during the morning, then started to come back down during the afternoon. They also restarted his feeds at 1cc per hour (he was at 21 on Wednesday). To make sure everything was going the right place, they got another belly x-ray and also put a diluted dye into his stomach tube. By seeing where the (bright blue) dye ended up, they were able to verify appropriate digestive movement. They'll start increasing the volume slowly, but probably won't go as high as they were earlier this week.
On the way out during shift change, we got the chance to talk to the head of the NICU. It's been over a week since we've talked to any doctors about his progress, and we were beginning to feel like we were on permanent pause. With two steps forward and two (or three) steps back, there was no real end in sight. After talking to the doctor we felt a bit better, though they're still going to take it slow and steady.
When they came up with this new idea of keeping him on his side to collapse his left lung, the idea was twofold. First, they wanted to see if collapsing that lung impeded his breathing or overall progress...if so, then he obviously needs the use of that lung. Second, they wanted to see if relieving the pressure on his right lung, even temporarily, would allow him to improve. Even though he's had setbacks after getting upset or being moved, he's demonstrated the ability to do better in the right conditions. If he hadn't shown those fleeting signs of improvement during the last week, we would have been having a much different (and more sad) conversation. Since he proved himself in both tests, they know that he's not a lost cause. Unfortunately, his overall circumstances also suggest that his survival is far from guaranteed, and that even a successful path will be a long, difficult one.....nine months and a year were both mentioned as possibilities, but it could be even longer.
At the moment, it looks like the likely next step for a permanent solution would be a lung resection, removing the underdeveloped upper lobe of the left lung so that it no longer impedes the heart or right lung. There are a lot of discussions to be had, doctors to be consulted, and questions to be asked before they would actually perform the surgery, but it seems like the removal may give his right lung a good shot at further development. For now, they want to see him continue as-is for a week or so, keeping the pressure off his right lung and allowing him to have a few good days in a row. Though they probably could wean him back to the conventional ventilator, the hi-fi makes it easier for him to recover from any temporary collapses of his good lung. As such, they'll probably keep him on it for a while.
The meeting was relatively brief, but we also discussed a few lung surgery details, the stomach valve surgery, short-term ventilator plans, and possible complications and setbacks. I won't bore you with the details, but I'll definitely keep posting with Andrew's progress, both with this strategy and toward a more permanent solution. Even with the continued possibility of a negative outcome, we feel better being informed and we really appreciated the doctor's update today. I hope the same is true of Andrew's loyal readers.
On the way out during shift change, we got the chance to talk to the head of the NICU. It's been over a week since we've talked to any doctors about his progress, and we were beginning to feel like we were on permanent pause. With two steps forward and two (or three) steps back, there was no real end in sight. After talking to the doctor we felt a bit better, though they're still going to take it slow and steady.
When they came up with this new idea of keeping him on his side to collapse his left lung, the idea was twofold. First, they wanted to see if collapsing that lung impeded his breathing or overall progress...if so, then he obviously needs the use of that lung. Second, they wanted to see if relieving the pressure on his right lung, even temporarily, would allow him to improve. Even though he's had setbacks after getting upset or being moved, he's demonstrated the ability to do better in the right conditions. If he hadn't shown those fleeting signs of improvement during the last week, we would have been having a much different (and more sad) conversation. Since he proved himself in both tests, they know that he's not a lost cause. Unfortunately, his overall circumstances also suggest that his survival is far from guaranteed, and that even a successful path will be a long, difficult one.....nine months and a year were both mentioned as possibilities, but it could be even longer.
At the moment, it looks like the likely next step for a permanent solution would be a lung resection, removing the underdeveloped upper lobe of the left lung so that it no longer impedes the heart or right lung. There are a lot of discussions to be had, doctors to be consulted, and questions to be asked before they would actually perform the surgery, but it seems like the removal may give his right lung a good shot at further development. For now, they want to see him continue as-is for a week or so, keeping the pressure off his right lung and allowing him to have a few good days in a row. Though they probably could wean him back to the conventional ventilator, the hi-fi makes it easier for him to recover from any temporary collapses of his good lung. As such, they'll probably keep him on it for a while.
The meeting was relatively brief, but we also discussed a few lung surgery details, the stomach valve surgery, short-term ventilator plans, and possible complications and setbacks. I won't bore you with the details, but I'll definitely keep posting with Andrew's progress, both with this strategy and toward a more permanent solution. Even with the continued possibility of a negative outcome, we feel better being informed and we really appreciated the doctor's update today. I hope the same is true of Andrew's loyal readers.
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I was wondering what type of music/recordings is Andrew listening to?