He's still off for now. When I got back after rounds, he had calmed down and they had taken another gas that was much better. His pH was normal and his CO2 was back to "within parameters" (70).
He still isn't waking up without being upset, but he's able to get at least a little sleep. He goes from zero to sixty in a heartbeat, and any little thing sets him off. A respiratory therapist pushed his nasal prongs in a little bit...inconsolable for five minutes.
He's working a little hard to breathe...if he were a normal baby, he'd be working VERY hard. He'll have to either get used to it and stop crying, or risk being reintubated. He currently requires a LOT of attention and patience...when we left, his (great) day nurse took my place, holding his hand and keeping him calm. Let's hope the night nurse (and all others for the next week) are just as kind and patient.
Six and a half hours so far...
Aug 31, 2007
Whew!
Oh man, this is stressful. They extubated Andrew around noon, and I've spent the last two hours holding his hand, patting the blanket (for the vibration), and doing everything I can to keep him calm. He's been waking up and crying every couple of minutes, and probably with good reason. Putting a baby as big as him on CPAP is difficult, and they've been focused on mechanical issues the entire time.
Most of the issue is because the little nasal prongs are too small for his nose, and it creates a leak. He's supposed to be getting air pressures of 22 (breathing in) and 8 (breathing out). Instead, it's closer to 10 and 6. They don't have bigger prongs or a mask that will work with this ventilator, so they're attempting to make it more efficient. They tried him laying down, they tried him sitting up, they tried putting a blanket under his back to lift his neck. They tried holding the prongs in manually (obviously not a long-term solution), plugging his mouth (part of the leak) with a pacifier tied to a blanket, and even putting a little chin-strap on him to keep his mouth closed.
They've also tried at least four different vent settings. I don't even know what SIMV, CMV, CPAP, and VIVE stand for, but I do know that they don't help a leaky nasal prong. The ventilator alarm goes off once every couple minutes (Leak Detected!), and his normal alarms go off every time his blood pressure spikes. He's gotten three doses of Ativan, one of Methadone, and one of morphine...he's still not happy.
They tried him with a rate (10 breaths per minute) and without a rate...he seems to like it better without. When he gets upset, he fights against the vent, shutting down his airway. They took a blood gas after an hour and a half, which was (very predictably) not great. His oxygen was fantastic (172...the best it's ever been), but his CO2 was high (104) and his pH was low. I don't know how bad they'll let his pH/CO2 get, but probably not a whole lot worse. Fortunately, I feel like the issue is almost entirely mechanical, and not really his fault. If they have to reintubate, we'll need to make sure that they have a better strategy next time.
I've been kicked out for medical rounds (2-3:30), so we'll see how he's doing when I get back. I can't be there 24/7, so hopefully they can keep him relatively calm without my help. Almost the entire time, there were two respiratory therapists, a nurse, an occasional doctor, and I...all in a tiny room. The nurse and RTs seem to think he'll do really well if they can get things figured out...they're happy with how he's recovering from his snits. I think the doctor might have an itchy reintubation finger, so I can't guarantee he'll still be tube-free when I go back in. It's going to be a matter of finding a long-term solution to the leak and his attitude, which I think would improve if he were more comfortable.
This would be the point where we need to sit back, take a deep breath, and let the professionals do their job. I might be able to calm him down, but the doctors, nurses, and Andrew himself will really decide if he can stay off the vent.
Most of the issue is because the little nasal prongs are too small for his nose, and it creates a leak. He's supposed to be getting air pressures of 22 (breathing in) and 8 (breathing out). Instead, it's closer to 10 and 6. They don't have bigger prongs or a mask that will work with this ventilator, so they're attempting to make it more efficient. They tried him laying down, they tried him sitting up, they tried putting a blanket under his back to lift his neck. They tried holding the prongs in manually (obviously not a long-term solution), plugging his mouth (part of the leak) with a pacifier tied to a blanket, and even putting a little chin-strap on him to keep his mouth closed.
They've also tried at least four different vent settings. I don't even know what SIMV, CMV, CPAP, and VIVE stand for, but I do know that they don't help a leaky nasal prong. The ventilator alarm goes off once every couple minutes (Leak Detected!), and his normal alarms go off every time his blood pressure spikes. He's gotten three doses of Ativan, one of Methadone, and one of morphine...he's still not happy.
They tried him with a rate (10 breaths per minute) and without a rate...he seems to like it better without. When he gets upset, he fights against the vent, shutting down his airway. They took a blood gas after an hour and a half, which was (very predictably) not great. His oxygen was fantastic (172...the best it's ever been), but his CO2 was high (104) and his pH was low. I don't know how bad they'll let his pH/CO2 get, but probably not a whole lot worse. Fortunately, I feel like the issue is almost entirely mechanical, and not really his fault. If they have to reintubate, we'll need to make sure that they have a better strategy next time.
I've been kicked out for medical rounds (2-3:30), so we'll see how he's doing when I get back. I can't be there 24/7, so hopefully they can keep him relatively calm without my help. Almost the entire time, there were two respiratory therapists, a nurse, an occasional doctor, and I...all in a tiny room. The nurse and RTs seem to think he'll do really well if they can get things figured out...they're happy with how he's recovering from his snits. I think the doctor might have an itchy reintubation finger, so I can't guarantee he'll still be tube-free when I go back in. It's going to be a matter of finding a long-term solution to the leak and his attitude, which I think would improve if he were more comfortable.
This would be the point where we need to sit back, take a deep breath, and let the professionals do their job. I might be able to calm him down, but the doctors, nurses, and Andrew himself will really decide if he can stay off the vent.
Another Missed Post
Sorry if I concerned anyone by not posting, especially this close to Andrew's extubation date, but it was completely unintentional. I had lots of work to do last night, and ended up asleep on the couch....and after I've been asleep, I'm no longer responsible for my actions.
Thursday wasn't quite as eventful, but still went pretty well. There was no spitting up, which is a great improvement, and they've started increasing the feeding volume by 1cc per day. He's now at 7cc per hour...a slow start on his way back up toward 25 per hour.
They unexpectedly put in a new arterial line yesterday. I think they really wanted to have one in during his time off the ventilator, because it will be much easier to monitor his progress. There's still a chance of it falling out, but they've pinned one leg to the bed so he doesn't kick quite as much. If they can keep it in for a few days, that will hopefully give them the confidence they need to leave it out the next time it stops working. They only had to sedate him temporarily, and went right back down on his ventilator settings when it was done.
The current plan is to extubate this morning. I have work for a couple of hours, but I'm trying to be there as much as possible, so I'll drive down during my last call. I plan to spend all day there, for at least the next few days, in order to keep him calm, change his diapers, and generally be on top of any issues that arise. He's still in isolation due to a single bacteria colony from about a week ago, so we have to wear disposable gowns and gloves when we walk into his room. This takes a little while, so it will help if someone (me) is already in the room to calm him until the nurse arrives. With the delay until Friday, Andrew will no longer have his primary nurses (they're off this weekend), so we're also trying to make sure that experienced nurses are on him during these critical few days.
He's been a little grumpy at times recently, but most of the time we're able to keep him calm by sitting next to his bed and holding his hand. This is certainly not an onerous task, so I'm happy to do my dadly duties.
Thursday wasn't quite as eventful, but still went pretty well. There was no spitting up, which is a great improvement, and they've started increasing the feeding volume by 1cc per day. He's now at 7cc per hour...a slow start on his way back up toward 25 per hour.
They unexpectedly put in a new arterial line yesterday. I think they really wanted to have one in during his time off the ventilator, because it will be much easier to monitor his progress. There's still a chance of it falling out, but they've pinned one leg to the bed so he doesn't kick quite as much. If they can keep it in for a few days, that will hopefully give them the confidence they need to leave it out the next time it stops working. They only had to sedate him temporarily, and went right back down on his ventilator settings when it was done.
The current plan is to extubate this morning. I have work for a couple of hours, but I'm trying to be there as much as possible, so I'll drive down during my last call. I plan to spend all day there, for at least the next few days, in order to keep him calm, change his diapers, and generally be on top of any issues that arise. He's still in isolation due to a single bacteria colony from about a week ago, so we have to wear disposable gowns and gloves when we walk into his room. This takes a little while, so it will help if someone (me) is already in the room to calm him until the nurse arrives. With the delay until Friday, Andrew will no longer have his primary nurses (they're off this weekend), so we're also trying to make sure that experienced nurses are on him during these critical few days.
He's been a little grumpy at times recently, but most of the time we're able to keep him calm by sitting next to his bed and holding his hand. This is certainly not an onerous task, so I'm happy to do my dadly duties.
Aug 30, 2007
Eventful Hump Day
Another good day, no thanks to us. I was only able to spend about an hour at the hospital before we had to leave for LA for my grandma's service. During that hour, Andrew slept for about 55 minutes, then woke up just before I left and got upset. He was inconsolable for about ten minutes and the nurse had to keep turning up his oxygen. Even when they got him calm, he was a little grumpy, frowning in his sleep. However, that was about it for bad news....the rest of the day he was great.
In the morning, he took a little field trip to radiology for an upper GI study. They put a special liquid (barium) in his stomach and then do X-rays to figure out how far it can travel through his digestive system. We still haven't heard the results of the study, but he did a great job during the transport. They didn't have to sedate him at all...in fact, he was doing a modified sprint throughout the trip. During a normal sprint, they turn off all the breaths being given to him by the machine (normally he gets 10 per minute). There is still some flow, what they call "pressure support," in order to overcome the difficulty of breathing through a tube, but all the breaths come from him rather than the machine. During his trip, they left the ventilator in his room and just attached his tube to a constant flow of oxygen. He was able to take all his own breaths, and ended up with a completely successful three-hour sprint.
While I was there (and once more later in the day), Andrew spit up some of the barium he had been given in the morning. This liquid is thick and often hard to move from the stomach, so it may have been giving him an upset tummy....it's possible his grumpiness before I left was due to that discomfort. Later in the day, a doctor and nurse suctioned the remainder out of his stomach, and that seemed to make him happier.
He had a second sprint in the afternoon and is working on his third while I write this. He was well-behaved for the first, and just as happy during this one. They'll take a blood gas later in the morning, in order to see how he's doing today. They may decide to continue with this sprinting strategy (three hours, three times a day) or they may try to challenge him even more (four hours, or four times a day).
He also received his two-month vaccinations a few hours ago. They smear a topical anesthetic onto his thighs, then give him the shots (three of them!) as quickly as possible. Because some kids have an adverse reaction to the vaccines (fever and grumpiness, mostly), the nurses give them Tylenol and watch them closely for a while. Andrew was a champ...he didn't even seem to notice the shots, and hasn't shown any signs of a reaction since. If this continues to be the case, it shouldn't delay his extubation at all. I'll post more details as things progress, and there's always a possibility of the plan changing yet again. Perhaps I'll write a post on the concept, mechanics, and importance of extubation, for those of you who have seen how important it seems (since I mention it in every entry) but don't really get the underlying idea.
Have a nice Thursday!
In the morning, he took a little field trip to radiology for an upper GI study. They put a special liquid (barium) in his stomach and then do X-rays to figure out how far it can travel through his digestive system. We still haven't heard the results of the study, but he did a great job during the transport. They didn't have to sedate him at all...in fact, he was doing a modified sprint throughout the trip. During a normal sprint, they turn off all the breaths being given to him by the machine (normally he gets 10 per minute). There is still some flow, what they call "pressure support," in order to overcome the difficulty of breathing through a tube, but all the breaths come from him rather than the machine. During his trip, they left the ventilator in his room and just attached his tube to a constant flow of oxygen. He was able to take all his own breaths, and ended up with a completely successful three-hour sprint.
While I was there (and once more later in the day), Andrew spit up some of the barium he had been given in the morning. This liquid is thick and often hard to move from the stomach, so it may have been giving him an upset tummy....it's possible his grumpiness before I left was due to that discomfort. Later in the day, a doctor and nurse suctioned the remainder out of his stomach, and that seemed to make him happier.
He had a second sprint in the afternoon and is working on his third while I write this. He was well-behaved for the first, and just as happy during this one. They'll take a blood gas later in the morning, in order to see how he's doing today. They may decide to continue with this sprinting strategy (three hours, three times a day) or they may try to challenge him even more (four hours, or four times a day).
He also received his two-month vaccinations a few hours ago. They smear a topical anesthetic onto his thighs, then give him the shots (three of them!) as quickly as possible. Because some kids have an adverse reaction to the vaccines (fever and grumpiness, mostly), the nurses give them Tylenol and watch them closely for a while. Andrew was a champ...he didn't even seem to notice the shots, and hasn't shown any signs of a reaction since. If this continues to be the case, it shouldn't delay his extubation at all. I'll post more details as things progress, and there's always a possibility of the plan changing yet again. Perhaps I'll write a post on the concept, mechanics, and importance of extubation, for those of you who have seen how important it seems (since I mention it in every entry) but don't really get the underlying idea.
Have a nice Thursday!
Aug 28, 2007
Same Doctor, New Plan
I know we've done "New Doctor, New Plan" before, but now we're going with a new plan even with the same doctor. I hesitate to even lay out the new plan, as the odds are good that everything will change yet again, but here's where we are for now....
This morning Andrew had a four hour sprint. Toward the end, he got quite fussy due to a dirty diaper, and though they were able to calm him down, it left him a bit tired...he was working a little harder to breathe, so they decided to start the ventilator breaths up again. He made it three hours and forty-five minutes, but there was apparently still some concern. He's also continued to spit up multiple times per day. There's bile in it, most likely because the GJ-tube is holding open a path for the bile to move up from the small intestine and into the stomach. They haven't been able to increase his feedings past 6cc per hour, and they want to make sure that he doesn't aspirate anything (breathe it into his lungs). He's not responding to medications (Prilosec and Reglan) that are supposed to help with reflux, and there's no end in sight. Everything seems to be moving through correctly, as he's going to the bathroom without a problem, but they want to confirm that there's no physical blockage anywhere in the system.
Between the breathing issues and the feeding issues, here's the new plan:
This morning Andrew had a four hour sprint. Toward the end, he got quite fussy due to a dirty diaper, and though they were able to calm him down, it left him a bit tired...he was working a little harder to breathe, so they decided to start the ventilator breaths up again. He made it three hours and forty-five minutes, but there was apparently still some concern. He's also continued to spit up multiple times per day. There's bile in it, most likely because the GJ-tube is holding open a path for the bile to move up from the small intestine and into the stomach. They haven't been able to increase his feedings past 6cc per hour, and they want to make sure that he doesn't aspirate anything (breathe it into his lungs). He's not responding to medications (Prilosec and Reglan) that are supposed to help with reflux, and there's no end in sight. Everything seems to be moving through correctly, as he's going to the bathroom without a problem, but they want to confirm that there's no physical blockage anywhere in the system.
Between the breathing issues and the feeding issues, here's the new plan:
- Wednesday- Perform an upper gastrointestinal study, by watching how liquid flows through his digestive tract using a fluoroscope.
- Wednesday- Give him his two month vaccinations, which were skipped when he actually turned two months old. Some children have reactions to these vaccines, so he'll be given Tylenol (for fever) and watched carefully for two days.
- Wednesday- Increase the sprints to three times a day, at three hours each time. Perhaps it was the four hour duration that stressed him, so maybe this will help.
- Thursday- Continue with three sprints.
- Friday- Extubate.
- Mid-September- Perform a Nissen fundoplication, creating a one-way valve in the stomach so that reflux will no longer be a problem. The surgeon wants to wait at least two months after the last abdomen surgery.
Unrelated Bad News
Being the bearer of bad news sucks. I feel like I've delivered too much of it recently, and I wish there was something monumentally exciting that I could report in order to partially offset the negatives. Let me at least say that Andrew's progress has been wonderful, D and I are very supportive of one another and have been coping as well as we can, and we couldn't ask for a more caring and kind set of friends, relatives, coworkers, and extended support group.
Andrew's great-grandmother H passed away last night at 7:45. She was my mom's mom...my Yia-Yia (greek for grandmother)...and we're all going to miss her very much. She wasn't what you would call a traditional grandma, but still managed to spoil, encourage, and support me in every way possible. She taught me how to play poker, bought me my first Nintendo system, and took me on my first visit to Greece. I was incredibly lucky to have the chance to make that trip with her, where she trekked all over the country without a hint of complaint, introduced me to family and friends that I had never met before, and really gave me a personal connection to a wonderful country. She was incredibly vibrant, sometimes larger-than-life, and lived every moment to the fullest. Until recently, she played cards and saw her friends and family every week, and still participated in a bowling league just a few years ago. She had a huge social network, and was universally loved amongst all who knew her.
The last few months have been very difficult for her and the family. A chronic back injury led to various medical treatments, none of which seemed to help the situation. As pain from the condition grew worse, her mobility suffered, and she was unable to do many of the things she loved most. Throughout the whole ordeal, I never heard her complain for a second....not about the pain, not about the mobility, and not even about the medical procedures. Unfortunately, complications from one of those procedures led to a worsening of her condition; she had a stroke, and couldn't devote the necessary effort to physical therapy and recovery because of the still-unsolved back pain. The last two months in particular have been a delicate balance of trying to resolve the pain without over-medicating...surgical procedures were no longer an option due to her delicate health, and the pain only got worse. Eventually we grew to realize that there was no happy solution, and that effort should be focused on relieving her pain until the inevitable conclusion. Everyone has had a rough few months dealing with the combination of Yia-Yia and Andrew, but my mom has had it particularly rough...not being able to visit Andrew very much, while witnessing all the awful moments of her slow slide. While this outcome is not the one we would ever wish for, nor the one we expected several months ago, relief of her pain was unfortunately the best result for Yia-Yia and everyone else involved.
For me, the saddest part of the whole situation will be that Andrew will never know his great-grandma. She won't be able to teach him poker, or speak Greek to him, or give him a Christmas present wrapped in newspaper and/or grocery bags. She lived a full life and produced a wonderful family, but I regret that Andrew missed out on that personal connection. We will certainly all tell him stories, but we'll never be able to communicate her laugh, her heart, even the smell of her perfume....we can never express how much she meant to us all.
I love you, Yia-Yia.
Andrew's great-grandmother H passed away last night at 7:45. She was my mom's mom...my Yia-Yia (greek for grandmother)...and we're all going to miss her very much. She wasn't what you would call a traditional grandma, but still managed to spoil, encourage, and support me in every way possible. She taught me how to play poker, bought me my first Nintendo system, and took me on my first visit to Greece. I was incredibly lucky to have the chance to make that trip with her, where she trekked all over the country without a hint of complaint, introduced me to family and friends that I had never met before, and really gave me a personal connection to a wonderful country. She was incredibly vibrant, sometimes larger-than-life, and lived every moment to the fullest. Until recently, she played cards and saw her friends and family every week, and still participated in a bowling league just a few years ago. She had a huge social network, and was universally loved amongst all who knew her.
The last few months have been very difficult for her and the family. A chronic back injury led to various medical treatments, none of which seemed to help the situation. As pain from the condition grew worse, her mobility suffered, and she was unable to do many of the things she loved most. Throughout the whole ordeal, I never heard her complain for a second....not about the pain, not about the mobility, and not even about the medical procedures. Unfortunately, complications from one of those procedures led to a worsening of her condition; she had a stroke, and couldn't devote the necessary effort to physical therapy and recovery because of the still-unsolved back pain. The last two months in particular have been a delicate balance of trying to resolve the pain without over-medicating...surgical procedures were no longer an option due to her delicate health, and the pain only got worse. Eventually we grew to realize that there was no happy solution, and that effort should be focused on relieving her pain until the inevitable conclusion. Everyone has had a rough few months dealing with the combination of Yia-Yia and Andrew, but my mom has had it particularly rough...not being able to visit Andrew very much, while witnessing all the awful moments of her slow slide. While this outcome is not the one we would ever wish for, nor the one we expected several months ago, relief of her pain was unfortunately the best result for Yia-Yia and everyone else involved.
For me, the saddest part of the whole situation will be that Andrew will never know his great-grandma. She won't be able to teach him poker, or speak Greek to him, or give him a Christmas present wrapped in newspaper and/or grocery bags. She lived a full life and produced a wonderful family, but I regret that Andrew missed out on that personal connection. We will certainly all tell him stories, but we'll never be able to communicate her laugh, her heart, even the smell of her perfume....we can never express how much she meant to us all.
I love you, Yia-Yia.
Too Tired for a Title
I've gotten burned by saying that Andrew had a good day, because it often seems to be followed by a not-so-good one. However, I can't let that stop me from acknowledging the positives....so, Andrew had a pretty good day today.
He made it through a three hour sprint this morning, and his capillary gas (which is usually worse than one from an arterial line) actually came back better than the two previous arterial gases. He was taking turns being grumpy and cute, but just seeing him awake and alert makes me happy. He's been responding a bit better to desaturations recently....his oxygen levels can get down into the 80s, or even the 70s, but he's been better at getting them back up on his own, without requiring extra effort (or even extra oxygen) from the nurses. Of course, he still has moments where he drops into the 50s and 60s, and then he needs some assistance, but any improvement is a good one.
He's continuing to spit up small amounts, so they still haven't increased the volume of his feedings. They hope that having the ventilator tube removed will ease the pressure on his internal organs, relieve his gag reflex, and stop the emesis (fancy word for vomiting).
I just called for a check with the night nurse. He did really well on another three hour sprint and had a great gas. He didn't even seem to mind the heel prick that much. Tomorrow they'll move up to four hour sprints....then they're planning for extubation on Wednesday morning.
He made it through a three hour sprint this morning, and his capillary gas (which is usually worse than one from an arterial line) actually came back better than the two previous arterial gases. He was taking turns being grumpy and cute, but just seeing him awake and alert makes me happy. He's been responding a bit better to desaturations recently....his oxygen levels can get down into the 80s, or even the 70s, but he's been better at getting them back up on his own, without requiring extra effort (or even extra oxygen) from the nurses. Of course, he still has moments where he drops into the 50s and 60s, and then he needs some assistance, but any improvement is a good one.
He's continuing to spit up small amounts, so they still haven't increased the volume of his feedings. They hope that having the ventilator tube removed will ease the pressure on his internal organs, relieve his gag reflex, and stop the emesis (fancy word for vomiting).
I just called for a check with the night nurse. He did really well on another three hour sprint and had a great gas. He didn't even seem to mind the heel prick that much. Tomorrow they'll move up to four hour sprints....then they're planning for extubation on Wednesday morning.
Aug 27, 2007
Update
Sounds like they aren't going to bother putting a new arterial line in. They're starting a sprint right now (hopefully he's awake enough) and they'll only be taking blood gases twice a day. This decision has its positives and negatives.....
Good:
Good:
- No delay on his extubation strategy
- No arterial line means it will be easier to hold him, which we haven't done in a few weeks
- Fewer gases mean they take less blood, hopefully foregoing the need for future transfusions
- One less thing to go wrong and cause delays
- When they do draw blood, it will be through his heel, which is uncomfortable
- These draws, called "capillary gases," are less accurate
- No blood pressure reading means less scientific indication of his status
A Case of the Mondays
Well, Andrew's arterial line came out this morning. This line, aside from being where they draw blood, is also hooked up to a blood pressure monitor, so they can keep track of his mood and general health. When the BP sensor flatlines on the monitor, that means it's not getting a good signal. In the past few days, it's gone flat several times, but moving his arm, moving the sensor, or letting his muscles relax has always allowed it to recover. This morning they weren't getting a signal, so they tried to fix it physically, and they weren't able to keep it in. So, the doctor whose lines "never budge," who is one of only two doctors that can get arterial lines in the armpit, was apparently unsuccessful this time, leaving us to wonder what will happen when it's put in by less of an expert. It's barely possible to stay in for less than 2.5 days, which is how long this one lasted.
As much as we'd like to get in a really satisfying "I told you so," the situation is far too important to be distracted with that. For now, he's been given a sedative and paralytic so they could mess with the line, and he's back up to full vent settings. They'll have to sedate him again when they put another line in, assuming they are able. Apparently they expect to turn the ventilator settings down much quicker this time, so he might only miss a single sprint. We'll talk to the doctors this afternoon about the plan moving forward.
As much as we'd like to get in a really satisfying "I told you so," the situation is far too important to be distracted with that. For now, he's been given a sedative and paralytic so they could mess with the line, and he's back up to full vent settings. They'll have to sedate him again when they put another line in, assuming they are able. Apparently they expect to turn the ventilator settings down much quicker this time, so he might only miss a single sprint. We'll talk to the doctors this afternoon about the plan moving forward.
Good end to the weekend
Andrew had a good day today. His two hour sprint at 10am went perfectly, and he was pretty happy while we were there. More importantly, all necessary lines are sticking where they should be. He spit up a bit while we were there...still no milk involved, so he's doing okay on the feeds.
He was apparently a little grumpy for the nurse tonight and had a gas that wasn't as great as his recent results, but he was still within parameters. They took another gas after a 10pm sprint (another two hours), and his CO2 (and pH) had gotten better. A diaper change solved a later bit of fussiness. He's having a nice calm night since then.
I suspect they will move to three hour sprints at some point tomorrow, and perhaps increase his feeding volume as well. Before they extubate later this week, they'll probably either try four hour sprints or three sprints a day, just to get him as much practice as possible.
Hope you enjoy the picture.
He was apparently a little grumpy for the nurse tonight and had a gas that wasn't as great as his recent results, but he was still within parameters. They took another gas after a 10pm sprint (another two hours), and his CO2 (and pH) had gotten better. A diaper change solved a later bit of fussiness. He's having a nice calm night since then.
I suspect they will move to three hour sprints at some point tomorrow, and perhaps increase his feeding volume as well. Before they extubate later this week, they'll probably either try four hour sprints or three sprints a day, just to get him as much practice as possible.
Hope you enjoy the picture.
Big Eyes
This pic is from a few days ago, after his GJ-tube was inserted. He was a little puffy due to the sedation, but his rash looks a lot better.
Aug 26, 2007
Just pretend it's 5 in the morning
I just remembered that I forgot to post last night...sorry. There was no reason behind it, I just never got around to it and then was very tired when I woke up on the couch and headed to bed. Andrew had a pretty good day yesterday, and that continued throughout the night. Every gas has been good, enough to wean him down to 10 breaths per minute, which they consider minimal settings. He had his first sprint last night, which lasted an hour, and he'll have his second this morning, lasting two hours. He's continued to spit up a little bit, and unfortunately there's bile in it because the GJ-tube is holding open the lower portion of the stomach, but there doesn't seem to be much milk in it. That means he's getting the nutrition and only spitting up because he's sensitive to the tube being in his mouth, suctioning, multi-tasking, etc. There are never good reasons for throwing up, but those are certainly better than not tolerating the feeds. We hope that having the tube out will solve the issue.
New doctor, new plan. Instead of being a little more aggressive and extubating on Monday, the new doctor wants to give him a few more days of sprinting and extubate around Thursday. Everyone, including us, thinks this will provide the ideal situation for extubation, and give him the best chance of being successful. However, we have seen several times in the past that delays can come from many angles, and losing another arterial line could set him back several days and delay the plan. We are hopeful that everything will work as intended, but we would be incredibly frustrated if delayed by circumstances beyond Andrew's control. If that happens, we'll have to have a long, hard talk with the doctors about the plan moving forward...we may have to proceed with less-than-ideal circumstances, just so that he has the opportunity to succeed. To quote a massive idiot, "You have to go to war with the army you have, not the army you want."
He had a great night, was fabulous on his sprint, and didn't spit up at all throughout the night. He did spit up this morning, but it was stomach juices and bile...no milk. Yesterday he was awake and personable most of the time we were there, and never got grumpy enough to require any significant assistance. They'll be slowly increasing his feeds (he's now at 6 cc per hour) and increasing sprint times (they'll try to get up to four hours at a time), and prepare him for Thursday...Wednesday at the earliest.
Frustration level: Blue, with the potential for red with another delay.
New doctor, new plan. Instead of being a little more aggressive and extubating on Monday, the new doctor wants to give him a few more days of sprinting and extubate around Thursday. Everyone, including us, thinks this will provide the ideal situation for extubation, and give him the best chance of being successful. However, we have seen several times in the past that delays can come from many angles, and losing another arterial line could set him back several days and delay the plan. We are hopeful that everything will work as intended, but we would be incredibly frustrated if delayed by circumstances beyond Andrew's control. If that happens, we'll have to have a long, hard talk with the doctors about the plan moving forward...we may have to proceed with less-than-ideal circumstances, just so that he has the opportunity to succeed. To quote a massive idiot, "You have to go to war with the army you have, not the army you want."
He had a great night, was fabulous on his sprint, and didn't spit up at all throughout the night. He did spit up this morning, but it was stomach juices and bile...no milk. Yesterday he was awake and personable most of the time we were there, and never got grumpy enough to require any significant assistance. They'll be slowly increasing his feeds (he's now at 6 cc per hour) and increasing sprint times (they'll try to get up to four hours at a time), and prepare him for Thursday...Wednesday at the earliest.
Frustration level: Blue, with the potential for red with another delay.
Aug 25, 2007
Clearing
Well, I feel a lot better after visiting Andrew...he always has that effect on me, as long as he's not really upset. When I got there, he was just coming out of a new round of sedation, as they had just gotten his new arterial line in. It's in his armpit, which last time wasn't a great location, but I think they've done enough to ensure that it'll stay put for a while. They used some sort of "Superglue for skin" to make sure the actual tube stays in place, then wrapped and taped the connector, then added a layer of Tagaderm (a sticky plastic dressing) and a layer of Ioban (a sticky orange antimicrobial dressing).
He slowly came around from the sedation and was a little disoriented, but calm. He had a good gas and then quickly started breathing on his own, so they turned down his ventilator from 30 breaths per minute to 20. Apparently his sedation wasn't quite as deep as it had been for his GJ-tube placement, so he didn't require the same slow wean as last time. After waiting a little while and taking another good gas, they continued to move him down (to 18). They'll proceed with the same strategy tonight, trying to get him down to minimal settings by early tomorrow morning. If everything goes well, they'll start sprinting again ASAP, and continue that through the weekend. The current plan (subject to change, of course) is to extubate on Monday morning.
After spending some time with Andrew and convincing myself that he was as comfortable and happy as possible, I then had a meeting with the doctor and social worker. We talked for quite a while, and she made me feel a bit better about the situation. It's still very important that Andrew shows progress, both on feedings and on his respiration, but I know that everyone has his best interests at heart. They'll continue with feeds at the same rate for a while, to give his digestive tract time to recover from the GJ procedure and hopefully let him relax and calm down with the spit-ups. He had two tiny spit-ups this evening, but with nothing near this morning's volume. Tonight's nurse seems to know how to handle him, and she's already been able to wean to 16 breaths per minute after a good gas.
Frustration level: yellow...much better than this morning.
He slowly came around from the sedation and was a little disoriented, but calm. He had a good gas and then quickly started breathing on his own, so they turned down his ventilator from 30 breaths per minute to 20. Apparently his sedation wasn't quite as deep as it had been for his GJ-tube placement, so he didn't require the same slow wean as last time. After waiting a little while and taking another good gas, they continued to move him down (to 18). They'll proceed with the same strategy tonight, trying to get him down to minimal settings by early tomorrow morning. If everything goes well, they'll start sprinting again ASAP, and continue that through the weekend. The current plan (subject to change, of course) is to extubate on Monday morning.
After spending some time with Andrew and convincing myself that he was as comfortable and happy as possible, I then had a meeting with the doctor and social worker. We talked for quite a while, and she made me feel a bit better about the situation. It's still very important that Andrew shows progress, both on feedings and on his respiration, but I know that everyone has his best interests at heart. They'll continue with feeds at the same rate for a while, to give his digestive tract time to recover from the GJ procedure and hopefully let him relax and calm down with the spit-ups. He had two tiny spit-ups this evening, but with nothing near this morning's volume. Tonight's nurse seems to know how to handle him, and she's already been able to wean to 16 breaths per minute after a good gas.
Frustration level: yellow...much better than this morning.
Aug 24, 2007
Insult to Injury
Not only have they not gotten the arterial line in (they'll try again later), but they also moved him back to the old (tiny) room because another critical patient was coming in. What color is in between orange and red?
Complete Non Sequitur
I'm trying really hard to keep my mind clear and positive, and I have to say that this helped. I know it's long, but it's worth watching until the end...maybe I'm a little punchy, but it just keeps getting funnier as it goes on.
Stormy
I'll try to keep my annoyance out of this post, but we are at a frustration level of orange.
Everything was going well until about two hours ago, and then Andrew decided to spit up again. Apparently it was quite a bit (four hours worth of feedings) and contained bile. The entire reason we delayed extubation earlier this week was because they said the GJ-tube would keep his food down, and that neither bile nor milk would leak back up in any large quantities. They told us the GJ would also work better than the NJ, which went through his nose, because he would be less likely to gag on the tube. As they were cleaning up his bed, they noticed that his ET tube was loose, which may be why he spit up. Somehow during the process, he also lost his arterial line. On top of it all, his primary nurse got called to another unit for the day, so we're dealing with someone that doesn't know him (or us) as well.
Somehow in the span of two hours, they went from being over halfway to minimal vent settings to having him completely sedated again (to add a new arterial line). He's back up to full support (30 breaths per minute), with a feeding solution that obviously doesn't work and an as-yet-to-be-added arterial line. I feel like we've wasted over a week on solutions that aren't solving anything, all the while getting no closer to getting him off the ventilator. Assuming they don't break anything else in the next couple of days, I suspect the earliest he could be extubated would be Monday or Tuesday.
Everything was going well until about two hours ago, and then Andrew decided to spit up again. Apparently it was quite a bit (four hours worth of feedings) and contained bile. The entire reason we delayed extubation earlier this week was because they said the GJ-tube would keep his food down, and that neither bile nor milk would leak back up in any large quantities. They told us the GJ would also work better than the NJ, which went through his nose, because he would be less likely to gag on the tube. As they were cleaning up his bed, they noticed that his ET tube was loose, which may be why he spit up. Somehow during the process, he also lost his arterial line. On top of it all, his primary nurse got called to another unit for the day, so we're dealing with someone that doesn't know him (or us) as well.
Somehow in the span of two hours, they went from being over halfway to minimal vent settings to having him completely sedated again (to add a new arterial line). He's back up to full support (30 breaths per minute), with a feeding solution that obviously doesn't work and an as-yet-to-be-added arterial line. I feel like we've wasted over a week on solutions that aren't solving anything, all the while getting no closer to getting him off the ventilator. Assuming they don't break anything else in the next couple of days, I suspect the earliest he could be extubated would be Monday or Tuesday.
Sunny
Andrew had a very good day today. He isn't being challenged by his vent settings (which may be good or bad), so he was pretty relaxed all day and friendly while we were there. His gases have all been good (though not as good as 38.5) and they've continued to wean his ventilator rate. He's back down at 17 breaths per minute (from 30).
They've started his feedings at 5cc per hour and are keeping the volume there for a while. He spit up a bit this morning (and it included some bile), but hopefully that was an isolated incident. He hasn't had any issues since the feedings have started.
It'll probably be Saturday before they try to extubate him again. I'll give updates along the way, but he's making good progress toward being ready.
They've started his feedings at 5cc per hour and are keeping the volume there for a while. He spit up a bit this morning (and it included some bile), but hopefully that was an isolated incident. He hasn't had any issues since the feedings have started.
It'll probably be Saturday before they try to extubate him again. I'll give updates along the way, but he's making good progress toward being ready.
Aug 23, 2007
A New Record
A normal blood CO2 concentration is 40....Andrew, due to his hernia and underdeveloped lungs, is far from normal, and generally a value between 55 and 75 is "within parameters." Before today, the best he had ever gotten was 44. However, because they're weaning the ventilator so slowly since yesterday's procedure, he's at rates much higher than he has been in the last month, giving him the ability to relax and get really comfortable. Today at 4pm, he hit a CO2 concentration of 38.5, a new record.
VIP
Andrew used his good looks and considerable charm to get a room upgrade upon returning to the NICU yesterday. He's still by himself, and in a much larger room with plenty of space for all his equipment (vent, nitric oxide cart, IV rack). We can now use both sides of the bed again, and we won't be squeezed if four people need to be in the room at once.
Let's Try Some Shorter Posts....
Still coming down very slowly, but he's had really good gases all night. They may change how quickly they're weaning him when they write new orders for today....or they may not.
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