I almost forgot....yesterday was Andrew's one-month birthday. A lot has happened in the last month, including several other birthdays, which we almost completely ignored. I apologize, but rest assured that we were thinking of you on your b-days, and I was simply too rude to call and wish you well.
So here's a shout-out to Andrew's great-grandpa M, his great-grandpa J, his aunt/cousin M, his "aunts" J and K, and his "uncles" A and R. Though I use aunt and uncle in a loose sense, I hope Andrew truly does end up with more "aunts," "uncles," and "cousins" than he knows what to do with.
Jul 16, 2007
"Change My Diaper First"
One last thing before I go to bed. I've mentioned several times all the things that upset Andrew, and I certainly can't blame him. Having a tube down your throat and getting poked and prodded all day has to be a nuisance, and I would be worried if he didn't get a little upset. However, Andrew seems to be most bothered by dirty diapers.
The catheter came out weeks ago and his digestive system is still moving enough to produce stool, so he has wet and/or dirty diapers relatively often, especially because of the diuretic. It seems that as soon as he's wet, he immediately starts to get fussy. That anxiety continues (and gains momentum) until his diaper is changed.
When he starts moving around and becoming agitated, the nurses have a tendency to come over and suction his mouth, move him around, etc. As of today, we all collectively realized that the first thing they should always do is check his diaper. If his diaper's wet, there's no point in getting him extra anxious from all the handling. At one point he dirtied his diaper twice within an hour....the nurse did everything she could think of to calm him down, then finally thought to check him down below....a new diaper and everything was good as new. The nurses are going to pass that message along at shift changes, but we're tempted to make a little sign to hang over his bed: "Check My Diaper First."
The catheter came out weeks ago and his digestive system is still moving enough to produce stool, so he has wet and/or dirty diapers relatively often, especially because of the diuretic. It seems that as soon as he's wet, he immediately starts to get fussy. That anxiety continues (and gains momentum) until his diaper is changed.
When he starts moving around and becoming agitated, the nurses have a tendency to come over and suction his mouth, move him around, etc. As of today, we all collectively realized that the first thing they should always do is check his diaper. If his diaper's wet, there's no point in getting him extra anxious from all the handling. At one point he dirtied his diaper twice within an hour....the nurse did everything she could think of to calm him down, then finally thought to check him down below....a new diaper and everything was good as new. The nurses are going to pass that message along at shift changes, but we're tempted to make a little sign to hang over his bed: "Check My Diaper First."
Week-Long Recap
We have been very impressed by Andrew's progress this week. He's moved from the hi-frequency ventilator, to the combination vent, to the conventional settings, and his numbers have only gotten better. He seems able to keep his oxygen saturation a little higher on these settings, so they've also been able to bring down the oxygen. Since his breathing won't work against the conventional vent, they've removed him from the paralytic and lowered the frequency of his morphine and Ativan doses. His increased motion (and the Lasix) have allowed a lot of his extra fluid to be removed and excreted, so he's looking a lot less bloated than before...no more alien head.
These are all great advances, yet they still don't really capture the progress he has made. From a purely non-statistical, subjective evaluation of the last week, he seems heartier, more active, and more stable than he ever has before. He still gets very upset when anything is done to him, including diaper changes, mouth suctioning, breathing treatments, and head movements. Sometimes, he gets upset just for the heck of it. However, the difference in his response has been like night and day. He still clenches down, tries to cry, turns his face all red, and looks sad...but at some point he stops, and there has usually been very little change in his numbers. During his most active periods, he can still set off some alarms. He can get his mean blood pressure over 75 and he can get his oxygen saturation down to the mid-80's, but neither of those will cause any permanent damage, and he rarely gets bad enough to make anyone concerned. Most importantly, as soon as he quiets down, his numbers go back to normal, his following blood gases turn out fine, and they can continue to wean. In previous weeks, one temper tantrum would throw off his numbers for hours, often freezing his progress.
Even the above paragraph is a bit too scientific. I can't tell you how good it feels to see him awake, opening his eyes, and looking at me. When he gets upset, it's heartbreaking, because no parent wants to see his child cry. But at the same time, I can't help being happy that he's strong enough to cry like a normal baby and still be stable moving forward. Looking into his eyes, I can feel the little person inside him in a way that I haven't experienced to this point...it's a beautiful, beautiful feeling. I know that there will be more setbacks, and that the past week may have been the exception rather than the rule. I'm trying not to get used to progress like this, knowing that every day is different. But at the same time, I can't help but feel like he's turned a corner, and that bringing him home is now a question of time, rather than a possibility.
These are all great advances, yet they still don't really capture the progress he has made. From a purely non-statistical, subjective evaluation of the last week, he seems heartier, more active, and more stable than he ever has before. He still gets very upset when anything is done to him, including diaper changes, mouth suctioning, breathing treatments, and head movements. Sometimes, he gets upset just for the heck of it. However, the difference in his response has been like night and day. He still clenches down, tries to cry, turns his face all red, and looks sad...but at some point he stops, and there has usually been very little change in his numbers. During his most active periods, he can still set off some alarms. He can get his mean blood pressure over 75 and he can get his oxygen saturation down to the mid-80's, but neither of those will cause any permanent damage, and he rarely gets bad enough to make anyone concerned. Most importantly, as soon as he quiets down, his numbers go back to normal, his following blood gases turn out fine, and they can continue to wean. In previous weeks, one temper tantrum would throw off his numbers for hours, often freezing his progress.
Even the above paragraph is a bit too scientific. I can't tell you how good it feels to see him awake, opening his eyes, and looking at me. When he gets upset, it's heartbreaking, because no parent wants to see his child cry. But at the same time, I can't help being happy that he's strong enough to cry like a normal baby and still be stable moving forward. Looking into his eyes, I can feel the little person inside him in a way that I haven't experienced to this point...it's a beautiful, beautiful feeling. I know that there will be more setbacks, and that the past week may have been the exception rather than the rule. I'm trying not to get used to progress like this, knowing that every day is different. But at the same time, I can't help but feel like he's turned a corner, and that bringing him home is now a question of time, rather than a possibility.
Keep it down, son
I feel like a lot has changed in the last week or so, and I don't know that I can do it justice this late at night. We had lots of visitors and excitement last week (and more next week), so we may try to relax a bit on Monday. If so, I'll try to write more, since just giving his daily stats won't really cut it.
As for those daily stats, he's doing great. His oxygen is in the 30's...we're trying to get it down to normal air content (21%) eventually, but this is very good progress. It fluctuates as he needs it for breathing treatments, "freak-out" recovery, etc...but it has steadily been going down. He is still on the conventional settings on his new ventilator, and has been for over 30 hours. Remember I said that nurses are a bit superstitious? Well, they still haven't told him that they've moved away the hi-fi vent, just so he doesn't hear that and need it again. His current vent can do some of the hi-frequency oscillation if he needs it, but hopefully they won't ever have to bring back the other machine.
On this new vent, he's down to 18 breaths per minute (bpm). That means even if he doesn't try to breathe at all, the machine will give him 18 breaths. Generally, babies need quite a bit more than that, which means that he has to "breathe above" the vent. When it senses that he's taking a breath on his own, it will give him a shot of air, just like the other machine-induced breaths. He's been able to keep his own respiratory rate in the 50's and 60's, which means he's breathing on his own twice for every one breath the machine gives him. Eventually they'll want to get the machine below 10 (five would be a very nice number) with his numbers all stable...meaning that he'll have to take most of his breaths himself and still keep his oxygen saturation up and his CO2 content down. He got to 18 bpm tonight (from 20) because the CO2 content was great on his last blood gas.
One area in which he has (so far) fallen a bit short is feeding. He did really well for the last day or two, but brought a bunch back up this evening. Here's how his feedings work...skip this paragraph if you have a queasy stomach. They put some volume of milk in a syringe, and hook it up to the nasogastric (NG) tube going down his nose to his stomach. If the chosen volume is 8 cc's, they'll deliver it over two hours, at 4 cc's per hour. Then they wait another hour for him to digest it and pass it through to his lower digestive system. After the third hour, they put an empty syringe on the NG tube and pull it open, creating a vacuum that sucks any remaining milk out of his stomach. We would like to see either no milk, or very little. If they get a little back, they'll often return it to the stomach, so he can continue to digest it (gross, I know). From his afternoon dose of 8 cc's, he had residuals of 6.5. The doctor decided to try something new and told them to return the 6.5, then add another 6 over the next two hours, for a total of 12.5. Unfortunately, when they pulled it out an hour later, they retrieved 18 cc's. If you do the math, it doesn't add up...which means the extra either came from his lower digestive system, or contained extra digestive juices, saliva, etc. This has happened before, and they're not really concerned, but they have stopped the feedings for now to give everything a chance to rest...they'll re-evaluate in the morning.
As for those daily stats, he's doing great. His oxygen is in the 30's...we're trying to get it down to normal air content (21%) eventually, but this is very good progress. It fluctuates as he needs it for breathing treatments, "freak-out" recovery, etc...but it has steadily been going down. He is still on the conventional settings on his new ventilator, and has been for over 30 hours. Remember I said that nurses are a bit superstitious? Well, they still haven't told him that they've moved away the hi-fi vent, just so he doesn't hear that and need it again. His current vent can do some of the hi-frequency oscillation if he needs it, but hopefully they won't ever have to bring back the other machine.
On this new vent, he's down to 18 breaths per minute (bpm). That means even if he doesn't try to breathe at all, the machine will give him 18 breaths. Generally, babies need quite a bit more than that, which means that he has to "breathe above" the vent. When it senses that he's taking a breath on his own, it will give him a shot of air, just like the other machine-induced breaths. He's been able to keep his own respiratory rate in the 50's and 60's, which means he's breathing on his own twice for every one breath the machine gives him. Eventually they'll want to get the machine below 10 (five would be a very nice number) with his numbers all stable...meaning that he'll have to take most of his breaths himself and still keep his oxygen saturation up and his CO2 content down. He got to 18 bpm tonight (from 20) because the CO2 content was great on his last blood gas.
One area in which he has (so far) fallen a bit short is feeding. He did really well for the last day or two, but brought a bunch back up this evening. Here's how his feedings work...skip this paragraph if you have a queasy stomach. They put some volume of milk in a syringe, and hook it up to the nasogastric (NG) tube going down his nose to his stomach. If the chosen volume is 8 cc's, they'll deliver it over two hours, at 4 cc's per hour. Then they wait another hour for him to digest it and pass it through to his lower digestive system. After the third hour, they put an empty syringe on the NG tube and pull it open, creating a vacuum that sucks any remaining milk out of his stomach. We would like to see either no milk, or very little. If they get a little back, they'll often return it to the stomach, so he can continue to digest it (gross, I know). From his afternoon dose of 8 cc's, he had residuals of 6.5. The doctor decided to try something new and told them to return the 6.5, then add another 6 over the next two hours, for a total of 12.5. Unfortunately, when they pulled it out an hour later, they retrieved 18 cc's. If you do the math, it doesn't add up...which means the extra either came from his lower digestive system, or contained extra digestive juices, saliva, etc. This has happened before, and they're not really concerned, but they have stopped the feedings for now to give everything a chance to rest...they'll re-evaluate in the morning.
Jul 15, 2007
A Horse of a Different Color
Today they switched Andrew to a new ventilator that combines the qualities of the hi-fi and the conventional ventilators. It gives pulses just like the high frequency one, then pauses for a normal breath. The machine looks like it was pulled out of a World War II bunker (old and clunky), but it's dependable and apparently pretty useful. It's not quite as efficient as the newer hi-fi vents, so they only use it for children that are stable on low settings. He's weaned quite a bit over the last week, so he definitely qualifies. This new vent gives the nurses the capability to change from one style to the other with the flip of a switch...so they can try out the conventional vent without having to roll over another machine. In fact, he's been on purely conventional ventilation (without the hi-fi portion) since 7pm. His numbers have been good, so let's hope he can stay that way for a while.
He got pretty anxious when we were there earlier today. His blood pressure went up a bit, his oxygen saturation went down a bit, and he looked a little out of sorts. Compared to earlier freak-outs we have seen, this was almost nothing...but I think it may have concerned the nurse. In the end, a changed (disgusting) diaper, a breathing treatment, and a little rest seemed to do him good. An extra dose of Ativan and morphine may have helped as well. By the time they took his next blood gas, his numbers were good enough to wean him. They've already turned the ventilator settings down twice, because his test results have come back positive.
They've continued the feedings with the same frequency and volume, and overall they've been going well. He's had residuals of half his volume a couple of times, and all of it once or twice, but they've now been going with this strategy for a day and a half, and I think a few failed attempts are par for the course. Hopefully they'll keep giving him additional chances to prove himself, instead of stopping the process entirely.
He got pretty anxious when we were there earlier today. His blood pressure went up a bit, his oxygen saturation went down a bit, and he looked a little out of sorts. Compared to earlier freak-outs we have seen, this was almost nothing...but I think it may have concerned the nurse. In the end, a changed (disgusting) diaper, a breathing treatment, and a little rest seemed to do him good. An extra dose of Ativan and morphine may have helped as well. By the time they took his next blood gas, his numbers were good enough to wean him. They've already turned the ventilator settings down twice, because his test results have come back positive.
They've continued the feedings with the same frequency and volume, and overall they've been going well. He's had residuals of half his volume a couple of times, and all of it once or twice, but they've now been going with this strategy for a day and a half, and I think a few failed attempts are par for the course. Hopefully they'll keep giving him additional chances to prove himself, instead of stopping the process entirely.
Jul 14, 2007
Friday the Thirteenth
No superstition here....another good day. Andrew's on his back again after two days on his tummy, and still responding well to both the treatments (handling, moving, suctioning) and his various medications. They've weaned the hi-fi vent down to very low levels....the amplitude is at 20 and the pressure is at 12, down from 30 and 16 on Tuesday. His oxygen percentage is a little high, but it's keeping his saturations high as well. They've started to wean the nitric oxide slowly....it's down to 10 from 20.
The feedings have continued, with only a tiny bit of residuals. They have been on breast milk since last night, and have increased the volume a bit. It's still not enough to give him any sort of sustenance....he's dependent on his IV fluids and fat for that...but every feeding that stays down is a good one.
They put him back on another round of steroids, which will hopefully help his lungs develop more quickly. The breathing treatments require that he be taken off the hi-fi vent and hand-bagged while the medicine is added to the oxygen stream. I watched the respiratory therapist go through the whole process yesterday, and I was amazed how well he tolerated it. They always turn up the oxygen temporarily to make sure he's well-saturated, but it was definitely successful, and they were able to turn it right back down.
A couple things on a non-scientific note. On Thursday while I was there, Andrew got a case of the hiccups. I've actually seen him with the hiccups a few times, but this was a long bout...perhaps fifteen or twenty minutes straight. He was pretty well-sedated, but I could still tell that he was confused and a bit annoyed by it. It was far more heartbreaking than I thought it would be, to sit there unable to help....hiccups are hard enough to stop as a healthy adult. I couldn't tell him to hold his breath, I certainly couldn't scare him, and drinking water upside-down would be an acrobatic feat worthy of a SuperBaby. It was a good lesson in being patient with Andrew's quirks; it's something I'll have to work on before he comes home.
On the positive side, I was holding his hand for a while today....he's had a hand free of lines for about a week, and it feels like more of a connection when you can slip your finger into his. Today, I literally had to pry his fingers open to get my finger in his hand. Once there, he squeezed it so tightly that I was shocked. I kept telling him that he was hurting me, but he didn't listen. It made me really confident that his strength and will are still there, even through sedation and paralytics.
The feedings have continued, with only a tiny bit of residuals. They have been on breast milk since last night, and have increased the volume a bit. It's still not enough to give him any sort of sustenance....he's dependent on his IV fluids and fat for that...but every feeding that stays down is a good one.
They put him back on another round of steroids, which will hopefully help his lungs develop more quickly. The breathing treatments require that he be taken off the hi-fi vent and hand-bagged while the medicine is added to the oxygen stream. I watched the respiratory therapist go through the whole process yesterday, and I was amazed how well he tolerated it. They always turn up the oxygen temporarily to make sure he's well-saturated, but it was definitely successful, and they were able to turn it right back down.
A couple things on a non-scientific note. On Thursday while I was there, Andrew got a case of the hiccups. I've actually seen him with the hiccups a few times, but this was a long bout...perhaps fifteen or twenty minutes straight. He was pretty well-sedated, but I could still tell that he was confused and a bit annoyed by it. It was far more heartbreaking than I thought it would be, to sit there unable to help....hiccups are hard enough to stop as a healthy adult. I couldn't tell him to hold his breath, I certainly couldn't scare him, and drinking water upside-down would be an acrobatic feat worthy of a SuperBaby. It was a good lesson in being patient with Andrew's quirks; it's something I'll have to work on before he comes home.
On the positive side, I was holding his hand for a while today....he's had a hand free of lines for about a week, and it feels like more of a connection when you can slip your finger into his. Today, I literally had to pry his fingers open to get my finger in his hand. Once there, he squeezed it so tightly that I was shocked. I kept telling him that he was hurting me, but he didn't listen. It made me really confident that his strength and will are still there, even through sedation and paralytics.
Jul 13, 2007
Late One
Yes, another late post...I need to get to bed, so I'll keep this quick. D is doing much better, the fever is almost entirely gone, and it looks like the antibiotics are helping. We'll try and head down to the hospital together tomorrow after she gets a checkup.
Andrew had a good day overall. His oxygen, vent amplitude, and vent pressure are all down, the first time everything has gone down in a few days...it's been down on one, up on another. He's been on his tummy for two days straight, and they've been turning his head and giving him breathing treatments. His edema (extra fluid) is looking much better, and they have switched back to the weaker diuretic. He's done with his course of antibiotics, and none of the cultures taken from his blood or his chest have come back positive.
They started feedings this morning, just a tiny bit (4 cc's in two doses, every three or four hours). They're trying Pedialyte to start with. As of my last call (about an hour ago), he had successfully completed twelve hours of feedings and they were moving over to breast milk on the same dosage and schedule. This small a volume isn't really enough to sustain anything, but hopefully it will teach his stomach and intestines how to start the process.
Andrew had a good day overall. His oxygen, vent amplitude, and vent pressure are all down, the first time everything has gone down in a few days...it's been down on one, up on another. He's been on his tummy for two days straight, and they've been turning his head and giving him breathing treatments. His edema (extra fluid) is looking much better, and they have switched back to the weaker diuretic. He's done with his course of antibiotics, and none of the cultures taken from his blood or his chest have come back positive.
They started feedings this morning, just a tiny bit (4 cc's in two doses, every three or four hours). They're trying Pedialyte to start with. As of my last call (about an hour ago), he had successfully completed twelve hours of feedings and they were moving over to breast milk on the same dosage and schedule. This small a volume isn't really enough to sustain anything, but hopefully it will teach his stomach and intestines how to start the process.
Jul 12, 2007
What Next?
We spent a lot of time at the hospital today...no, not THAT hospital. In fact, we didn't get to see Andrew at all today. Instead, we spent several hours at the Scripps Encinitas Emergency Room. On Tuesday night, D spiked a fever, so we got a prescription for antibiotics and went to bed. In the morning, the fever had gotten worse instead of better and her doctor was unavailable, so we were advised to go to urgent care. Five hours later, we headed back home with an additional antibiotic prescription, an IV bag of saline and two syringes full of antibiotics in D's bloodstream, and a diagnosis of mastitis. She's already much better, controlling the fever with Tylenol and the rest with antibiotics. Cold compresses, hot compresses, extra pumping....we're doing everything we can to speed the process along. It'll probably be a couple of days until she's back at 100%, but we can go see Andrew as soon as she feels well enough, as she's not contagious.
It was sad that D's illness and our interminable ER wait ruined what would otherwise have been a good day. Andrew spent most of the day (from 9am to 10pm) on a conventional ventilator. Apparently he wasn't quite up to staying that way (his CO2 levels were a little too high in the 80's), but just trying it out again is a sign that the doctor's have regained some confidence in him. He was on his belly for most of the day and tolerated it well. They also turned his head several times...it doesn't sound like a big deal, but head direction indicates which lung is getting the most oxygen, since the ventilator tends to "point" at the far lung. By making him face to the right, it means his nubbin got more air than usual and his right lung less than usual, yet they didn't see any major desaturation. After putting him back on the hi-fi vent this evening, his CO2 levels are coming back down. His settings are where they were before he switched vents, which means he went through all those manipulations without any problems that required fixing.
I'll definitely go down and see him at some point tomorrow, and D will see how she feels. Rest is a very important part of recovery, so she should take it easy for a couple of days. I'll be her (and your) eyes-and-ears at the hospital. Once again, thank you all for following along.
It was sad that D's illness and our interminable ER wait ruined what would otherwise have been a good day. Andrew spent most of the day (from 9am to 10pm) on a conventional ventilator. Apparently he wasn't quite up to staying that way (his CO2 levels were a little too high in the 80's), but just trying it out again is a sign that the doctor's have regained some confidence in him. He was on his belly for most of the day and tolerated it well. They also turned his head several times...it doesn't sound like a big deal, but head direction indicates which lung is getting the most oxygen, since the ventilator tends to "point" at the far lung. By making him face to the right, it means his nubbin got more air than usual and his right lung less than usual, yet they didn't see any major desaturation. After putting him back on the hi-fi vent this evening, his CO2 levels are coming back down. His settings are where they were before he switched vents, which means he went through all those manipulations without any problems that required fixing.
I'll definitely go down and see him at some point tomorrow, and D will see how she feels. Rest is a very important part of recovery, so she should take it easy for a couple of days. I'll be her (and your) eyes-and-ears at the hospital. Once again, thank you all for following along.
Jul 11, 2007
New Procedure
After Andrew had his hernia surgery, there was a large empty space between his tiny left lung and the new patch on the diaphragm. Over time, this area fills in with fluid. Since the blood cultures they took a few days ago came back negative for any infection, they want to make sure that there's no potential infection in his chest cavity. So today the doctor poked a tiny hole between his ribs with a needle and drew off some of the fluid. If it looked bad, they would've sucked out as much as they could, started him on a more specific antibiotic, and then let it fill back in with clear (healthy) fluid later. Fortunately, the first batch of fluid came out clear and normal-looking, so they just pulled enough for a culture and were done.
The rest of his numbers have looked good all day, and he even tolerated the chest draw without much of a fuss. He's weaned quite a bit on everything today...his pressure and amplitude are down, and his gases have still been fine. They turned up the oxygen for the procedure, but slowly weaned it back down from there. He's behaved really well the last few days...we'll see how long it can continue.
The rest of his numbers have looked good all day, and he even tolerated the chest draw without much of a fuss. He's weaned quite a bit on everything today...his pressure and amplitude are down, and his gases have still been fine. They turned up the oxygen for the procedure, but slowly weaned it back down from there. He's behaved really well the last few days...we'll see how long it can continue.
Jul 10, 2007
Fun Stuff
I just talked to Andrew's nurse and she said he's looking wonderful this morning. They just got back the results of a blood gas test and she has to go find the doctor....his results were fabulous and she needs to know what to wean. Apparently his CO2 was in the 40's...if you remember, 50-70 is acceptable, over 70 is bad, and anything in the 50's means he should be weaned. Apparently he wants to move forward.
The doctor also told the nurse to get a weight from him, to which she replied, "You have got to be kidding." Andrew has been so fussy with just a little touching/movement (suctioning, changing diapers, moving sensors), that she was really worried about having to lift him entirely off his bed, move him to a scale, and then move him back when she was done. However, she said he handled it beautifully and didn't cause any problems. Actually, the one difficulty was that he went to the bathroom right before they weighed him....and right after they took his diaper off.
For the weigh-in, they held all his tubes up so that they wouldn't lay on the scale and influence the weight at all. There's still no way to tell how much additional fluid he has (quite a bit), but his weight came out to 4.55 kilograms, which equates to just over 10 pounds. It's only been a little over three weeks, so he's progressing nicely.
The doctor also told the nurse to get a weight from him, to which she replied, "You have got to be kidding." Andrew has been so fussy with just a little touching/movement (suctioning, changing diapers, moving sensors), that she was really worried about having to lift him entirely off his bed, move him to a scale, and then move him back when she was done. However, she said he handled it beautifully and didn't cause any problems. Actually, the one difficulty was that he went to the bathroom right before they weighed him....and right after they took his diaper off.
For the weigh-in, they held all his tubes up so that they wouldn't lay on the scale and influence the weight at all. There's still no way to tell how much additional fluid he has (quite a bit), but his weight came out to 4.55 kilograms, which equates to just over 10 pounds. It's only been a little over three weeks, so he's progressing nicely.
Geeky Pictures
I mentioned that I'd be posting an all-science entry for those that are interested in the details of what's flowing in and out of Andrew on a daily basis. Here it is. If you're bored by this sort of thing, skip it and take a look at the pictures of Andrew below.
First, let's start with liquid inputs. The rack below is attached to IV bags (hung above) and various lines on Andrew's arteries (the tubes dangling below). They had to add the top row when they switched to a constant paralytic drip the other day. The "nutrient" IV contains various vitamins and other sustenance. The "fat" IV contains pure lipids to allow him to gain weight while not being fed normal food/milk. The heparin is very diluted, and is on there solely to keep his arterial line flowing well...if it weren't there, blood could clot in the line. The syringe mount is where additional drugs (morphine, Ativan, fentanyl) are added via syringe...the mechanism actually pushes down the plunger at the designated rate.
This is the nitric oxide portion of the ventilator setup. The settings are on the right, in the shaded section, and the three values on the left are measuring the amounts actually entering his ventilator. The left one is the percentage of oxygen. The % of oxygen in the atmosphere is 21%, so the current setting of 34 is providing him extra O2. The maximum is obviously 100%, though it doesn't get that high unless he's seriously desaturating. The nitrogen dioxide value in the middle is a byproduct of nitric oxide and is usually at 0. The third value (20) is the nitric oxide they're giving him, and is supposed to help with pulmonary hypertension. His heart ultrasounds continue to show some hypertension, so this will probably stay pretty high for a while. It is measured in parts per million....the maximum is 40 and the minimum (before removing it entirely) is around 1.
This is the high-frequency ventilator itself. The left number represents the average pressure with which it pushes air into the lungs...we've seen it set anywhere between 13 and 17. The top-right number is the amplitude, which measures how "large" a wave of air is being pushed into his lungs. This has ranged between 28 and 45 in the last couple of weeks. We've never seen them change the other two values (frequency and inspiration percentage) so I'm going to ignore them for now.
Now let's talk about how they check on his progress. First, he's got a big panel with all his major statistics. Down the left side are all the real-time graphs of the values, the right side has the actual numeric values, and the middle has a history of the last thirty minutes, as well as the alarm boundaries. The top value is his heart rate, a simple measure of the beats of his heart....the alarms are set at 100 on the low end and 200 on the high end. Variability is fine, and infants have MUCH higher heart rates than adults. The red line is his blood pressure, and the numbers represent systolic (73), diastolic (41), and the mean (55). The mean can be anywhere between 40 and 70, so his values are great. The purple line is oxygen saturation, measured from a pulse oximeter wrapped around his thumb or fingers. This measures the percentage of oxygenated hemoglobin compared to deoxygenated hemoglobin...basically, the percentage of oxygen the blood is carrying compared to the maximum that it COULD carry. We're looking for something between 95 and 100, though the low 90's is okay. The low alarm is currently set at 87.
The other monitors they watch (in the pic below) are a second pulse oximeter (top) and a TCM (transcutaneous carbon dioxide monitor, bottom). The second pulse oximeter is attached to his foot and measures his pulse and oxygen saturation, both of which are on the monitor above. A difference in the saturation readings between his hand and his foot suggests pulmonary hypertension that is not allowing blood destined for his lower body to be oxygenated....there's really no other reason for the double readings. The TCM is a HIGHLY inaccurate device that gives the nurses a general indication of his carbon dioxide saturation. It has to be calibrated regularly and is still off between 5 and 30 points on almost every reading, when compared to his blood gas results. However, a spiking number on the TCM is often a good first indicator that something is wrong, and gives the nurses a reason to draw blood for an out-of-schedule blood test. We're looking for numbers between 50 and 70 on his blood gases, and preferably on this machine as well.
Good Alarms
We've spent a lot of time in the NICU at this point, and heard a lot of alarms. Alarms from Andrew, alarms from other babies, even the phone and intercom sound like alarms. For each baby, there are also several triggers for alarms....an IV infusion that's finished, a pulse or BP that's too high, an oxygen saturation that's too low, a ventilator that's lost pressure, etc. It's important to learn to differentiate between Andrew's alarms and those of other babies (so we don't worry ourselves), and to differentiate between unimportant alarms (empty IV) and important ones (desaturation). There are some alarms that will make ten nurses, doctors, and respiratory therapists come running (literally). There are others that can be completely ignored. Yet until tonight, we had never run into a happy alarm.
We stopped by for a visit after dinner tonight, and he was still doing pretty well. They had weaned his vent down a bit but brought his oxygen up a bit...basically a wash. However, they had changed the alarm settings so that his oxygen saturation needed to be between 87 and 95. It's been hovering in the low 90's during the last few days, but should be up in the high 90's. If the alarm goes off on the low end, they know they need to turn up the oxygen in the vent. If it's on the high end, they know they can probably wean him a bit. While we were there and interacting with him, his alarm was consistently going off for being too high. His saturation averaged around 97, with short periods of a perfect 100. They didn't want to wean based on those numbers, because they assumed that he was doing well because of our interaction...basically, the two of us being there was making him do a little better. But, they didn't want to reset the alarm boundaries, because the parameters were going to be the same all night. So, we had to listen to his alarm go off for quite a while (turned off in 30-second increments), telling us how great his oxygen saturation was. Definitely a good problem to have.
We stopped by for a visit after dinner tonight, and he was still doing pretty well. They had weaned his vent down a bit but brought his oxygen up a bit...basically a wash. However, they had changed the alarm settings so that his oxygen saturation needed to be between 87 and 95. It's been hovering in the low 90's during the last few days, but should be up in the high 90's. If the alarm goes off on the low end, they know they need to turn up the oxygen in the vent. If it's on the high end, they know they can probably wean him a bit. While we were there and interacting with him, his alarm was consistently going off for being too high. His saturation averaged around 97, with short periods of a perfect 100. They didn't want to wean based on those numbers, because they assumed that he was doing well because of our interaction...basically, the two of us being there was making him do a little better. But, they didn't want to reset the alarm boundaries, because the parameters were going to be the same all night. So, we had to listen to his alarm go off for quite a while (turned off in 30-second increments), telling us how great his oxygen saturation was. Definitely a good problem to have.
Post-Bandage Pics
A close-up of Andrew's scar
His eyes were open and alert, and he was relatively calm...an improvement
An overhead shot
Jul 9, 2007
Well-Behaved
Andrew is being a well-behaved little boy today. His oxygen percentage is down to 34 (from 48) and the ventilator amplitude is down to 30. The surgeon came by and took off both his bandages (neck and chest), and the Steri-Strips went with them. His scar looks good and will be a great conversation piece in 20 years.
They put him on a stronger diuretic on a higher dosage, and they're confident he has enough strength (and nutrients) to prevent an electrolyte imbalance. They really want to get rid of some of the edema. He already looks a bit better...his head is less swollen, though his eyes are still a bit puffy. It's amazing that he looks different every day. Today he's a bit flat-faced (because of the puffy eyes), but it still looks better than the day he resembled a monkey, the day he had an alien cranium, or the day he took after John Goodman. I'll post some pictures later.
I also took some pictures of the various machine displays, so I can explain what things mean to the geekier of my readers. I'll have an all-science post tonight or tomorrow, which most of you can ignore entirely.
All in all, a really good day. D had a talk with him yesterday, and apparently he listened. Maybe he only misbehaves for the nurses? Or maybe he's doped up on enough tranquilizers to stun a horse...one or the other.
They put him on a stronger diuretic on a higher dosage, and they're confident he has enough strength (and nutrients) to prevent an electrolyte imbalance. They really want to get rid of some of the edema. He already looks a bit better...his head is less swollen, though his eyes are still a bit puffy. It's amazing that he looks different every day. Today he's a bit flat-faced (because of the puffy eyes), but it still looks better than the day he resembled a monkey, the day he had an alien cranium, or the day he took after John Goodman. I'll post some pictures later.
I also took some pictures of the various machine displays, so I can explain what things mean to the geekier of my readers. I'll have an all-science post tonight or tomorrow, which most of you can ignore entirely.
All in all, a really good day. D had a talk with him yesterday, and apparently he listened. Maybe he only misbehaves for the nurses? Or maybe he's doped up on enough tranquilizers to stun a horse...one or the other.
Oxygen Percentages and Edible Flowers
I thought I'd break the trend and post an early entry today. We haven't even been down to see Andrew yet, but our first call was pretty good. His oxygen is down from 53 to 48 without a noticeable drop in his saturation. Everything else is stable and unchanged, and his CO2 is within parameters but not weanable.
We're at home getting ready and enjoying a beautiful anniversary bouquet of fruit (yes, I said bouquet) from Andrew's Grandma K. Later tonight, after visiting the hospital, we're headed to the Marine Room in La Jolla for our anniversary dinner.
We're at home getting ready and enjoying a beautiful anniversary bouquet of fruit (yes, I said bouquet) from Andrew's Grandma K. Later tonight, after visiting the hospital, we're headed to the Marine Room in La Jolla for our anniversary dinner.
Other Stuff
A quick non-Andrew post, for those wondering how/what D and I are doing.
D has almost completely recovered from the pregnancy/delivery. Physically, she's doing great and continuing to get even better every day. "Making food" for Andrew is going very well and we have an overflowing freezer, especially since they haven't tried to feed him again in the last few days. It's hard to schedule everything in three hour increments during the day (four hours at night), and it sucks that she has to wake up but doesn't get the payoff of having Andrew in her arms.
I can't say that this ordeal isn't hard on us. We both have good and bad days that are tied a little too closely to Andrew's day-to-day progress. It's a dangerous pattern that we're trying to work on together. D tends to be a little less patient and a little more emotionally volatile (with good reason), but I try to help by offering a pragmatic view of events as they unfold, as well as a longer-term outlook on the entire process.
Day-to-day, we have gotten into a pretty comfortable routine. We go down in the morning, take a break during rounds (2-3:30 on weekdays), and then come back until they kick us out at 6:30 for shift change. It's pretty impractical to have visitors, as the NICU visitor restrictions are pretty rigid, but Andrew's grandparents have come down several times (mostly on weekends). On the weekdays, we keep ourselves busy with friends and/or TV.
D's parents came down this weekend, my parents are down next weekend, and we've got a few things planned for this week. Monday is our two-year wedding anniversary, D's making a quick trip to Orange County on Tuesday, Andrew's great-grandma is coming into town for lunch on Wednesday, and Thursday is an extra-special dinner with our friends.
If anyone has specific questions about Andrew, D and I, or anything else that's going on in our lives, leave a comment or drop me an email. I didn't have a chance to respond to emails this weekend as I had planned, but rest assured we have received (and read) them all.
D has almost completely recovered from the pregnancy/delivery. Physically, she's doing great and continuing to get even better every day. "Making food" for Andrew is going very well and we have an overflowing freezer, especially since they haven't tried to feed him again in the last few days. It's hard to schedule everything in three hour increments during the day (four hours at night), and it sucks that she has to wake up but doesn't get the payoff of having Andrew in her arms.
I can't say that this ordeal isn't hard on us. We both have good and bad days that are tied a little too closely to Andrew's day-to-day progress. It's a dangerous pattern that we're trying to work on together. D tends to be a little less patient and a little more emotionally volatile (with good reason), but I try to help by offering a pragmatic view of events as they unfold, as well as a longer-term outlook on the entire process.
Day-to-day, we have gotten into a pretty comfortable routine. We go down in the morning, take a break during rounds (2-3:30 on weekdays), and then come back until they kick us out at 6:30 for shift change. It's pretty impractical to have visitors, as the NICU visitor restrictions are pretty rigid, but Andrew's grandparents have come down several times (mostly on weekends). On the weekdays, we keep ourselves busy with friends and/or TV.
D's parents came down this weekend, my parents are down next weekend, and we've got a few things planned for this week. Monday is our two-year wedding anniversary, D's making a quick trip to Orange County on Tuesday, Andrew's great-grandma is coming into town for lunch on Wednesday, and Thursday is an extra-special dinner with our friends.
If anyone has specific questions about Andrew, D and I, or anything else that's going on in our lives, leave a comment or drop me an email. I didn't have a chance to respond to emails this weekend as I had planned, but rest assured we have received (and read) them all.
Sunday, Sunday, Sunday
I hope I'm not causing permanent damage to anyone's psyches by postponing these daily updates until the wee hours of the morning. Hopefully you can just pretend that last night's update (at 3:28am) applies to most of today as well. If not, at least try not to lose any sleep hitting the Refresh button, because I can't guarantee any times for posting.
Today was overall a pretty good day. Yesterday's trend of a decrease in ventilator amplitude and increase in oxygen percentage continued, causing us some concern when we visited this afternoon. Turning down the vent is great, but we were concerned that his oxygen was getting too high (in the high 60's and low 70's). There's no danger inherent in that level, but it also gives less cushion room if he happens to have trouble....obviously you can't get any higher than 100% oxygen. However, they felt they needed to keep the levels up because his blood oxygen was hovering around 90 (out of 100)....they'd like to keep it between 95 and 100.
As of this evening, things are looking much better. They have been able to keep the ventilator amplitude down, and also decrease his oxygen percentage to 53.....that provides a lot more cushion room in case he gets upset. Even at this level, his blood oxygen saturation was in the mid- to high-90's (better than earlier). He's resting comfortably, his CO2 levels are "within parameters," and everything looks pretty stable. They're moving him around occasionally to prevent too much edema (extra fluid) from building up in one location, but making sure to sedate him before handling him too much.
Today was overall a pretty good day. Yesterday's trend of a decrease in ventilator amplitude and increase in oxygen percentage continued, causing us some concern when we visited this afternoon. Turning down the vent is great, but we were concerned that his oxygen was getting too high (in the high 60's and low 70's). There's no danger inherent in that level, but it also gives less cushion room if he happens to have trouble....obviously you can't get any higher than 100% oxygen. However, they felt they needed to keep the levels up because his blood oxygen was hovering around 90 (out of 100)....they'd like to keep it between 95 and 100.
As of this evening, things are looking much better. They have been able to keep the ventilator amplitude down, and also decrease his oxygen percentage to 53.....that provides a lot more cushion room in case he gets upset. Even at this level, his blood oxygen saturation was in the mid- to high-90's (better than earlier). He's resting comfortably, his CO2 levels are "within parameters," and everything looks pretty stable. They're moving him around occasionally to prevent too much edema (extra fluid) from building up in one location, but making sure to sedate him before handling him too much.
Jul 8, 2007
No News Is Good News
I'm going to start trying to post less specific information on this blog, mostly so we all (myself included) don't focus too closely on the individual numbers. We've been told many, many times that we should focus on Andrew and not on test results, vent settings, or any other number/stat. So, with that in mind, here's today's quick summary.
He's still on the nitric oxide and still on the high frequency ventilator. They've been weaning his amplitude on the vent, but have had to go up a bit on his oxygen percentage....basically six of one, half dozen of the other. He's mostly resting comfortably aside from one minor freak-out (that we know about).
If everything goes well, the next couple of weeks will probably be pretty boring. He's well-sedated (a good thing) and progress will likely be slower than it has been, so they can assure his stability with a more conservative strategy.
He's still on the nitric oxide and still on the high frequency ventilator. They've been weaning his amplitude on the vent, but have had to go up a bit on his oxygen percentage....basically six of one, half dozen of the other. He's mostly resting comfortably aside from one minor freak-out (that we know about).
If everything goes well, the next couple of weeks will probably be pretty boring. He's well-sedated (a good thing) and progress will likely be slower than it has been, so they can assure his stability with a more conservative strategy.
Jul 6, 2007
Today's Update
Before I get to the bad news, let me just say that his numbers looked good all day, they were able to stay stable (with good gases) and wean a little (without affecting his gases). The sedation strategy seems to be working for now, though he's such a strong (and big) baby that normal doses aren't always doing the job. For example, they put him on a drip of a new paralytic today. Protocol says that they need to stop the drip once an hour and wait for the baby to move, to make sure they're not overreacting. Andrew was moving all four limbs while still under a full drip. He wasn't awake enough to cause himself trouble, but it means he's strong and stubborn.
The bad news is that they put him back on the nitric oxide today. It wasn't unexpected, but we were hoping to avoid it. They did a chest ultrasound and apparently it showed some pulmonary hypertension. Though his numbers all looked good, they think having him on the NO will allow them to wean more easily, without worrying about the hypertension. We'll see how it pans out in the next few days.
The bad news is that they put him back on the nitric oxide today. It wasn't unexpected, but we were hoping to avoid it. They did a chest ultrasound and apparently it showed some pulmonary hypertension. Though his numbers all looked good, they think having him on the NO will allow them to wean more easily, without worrying about the hypertension. We'll see how it pans out in the next few days.
Email Responses
I've only sent out a few emails in the last three weeks, and I don't think I've answered any of the Andrew-related ones. I'll try and work my way through them this weekend, to at least acknowledge their receipt. I've got about 70 in my inbox, so it may take a while.
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