Andrew had another grumpy day today. His heart rate and blood pressure were high, possibly because they discontinued his heart medication yesterday. They had him on something last week while he was having the same issues....it seemed to be effective, because it came back soon after the medication stopped. I'm not sure of the root cause, but we'll definitely be talking to the doctor about it at our next family conference. I'm overstating things a bit when I say he was grumpy, because he really didn't seem all that upset, but I think having a high heart rate made him a bit nervous. He was breathing a little hard and had a scared look in his eyes at times.
That being said, he's still doing well on the ventilator. He's still at four sprints per day and he's still getting great results on his follow-up blood tests. Let's hope he continues with the same pattern.
I don't have a whole lot of new info today, so I'm going to try and get some sleep. Have a nice weekend.
Oct 13, 2007
Oct 11, 2007
Early Halloween
A few pics from the last couple of days.
He's been on the warm side recently, so we opted against putting the hat all the way on...we'll see how he's feeling when Halloween hits.
His cheeks are still swollen from the steroids. He's on a much smaller dosage, and they're actually getting a tiny bit better every day, but he's going to look like the Godfather for a while.
Happy Birthday To Me!
Yes, today is my 29th birthday. It's nothing particularly special, because I plan to be 29 for the next 20 years. Since I can't have what I really want for my birthday (hint....it involves a tiny person living in our guest room), I'm quite happy with a good week for Andrew and a boatload of well-wishes. Thank you for your comments, emails, and cards....I appreciate them all.
We both had to work today, so we didn't get to do anything too special. We headed to the hospital after work, then chowed down on some Greek food. A quiet evening at home with some TV (and more work) is now in progress.
We both had to work today, so we didn't get to do anything too special. We headed to the hospital after work, then chowed down on some Greek food. A quiet evening at home with some TV (and more work) is now in progress.
Daily Recap
Andrew seemed a little grumpy today, but it was probably because he had a very busy day. First, he spent an hour in his chair while sprinting. They were only planning on putting him there for 10-15 minutes, but he seemed to be enjoying it. He was comfortable and relaxed enough to start to fall asleep, so they just left him there for the entire sprint.
At some point during the day, they got the results on cultures from a few days ago. His PICC line and arterial line both came back positive for some form of yeast, so they removed the PICC and replaced the arterial line. He's now getting almost everything through his central line (in his chest). He came off a couple of medications, so he's back to one row of IV pumps. They've also started to wean his steroid dosage....it will be a very slow process, but it's good that they're getting started.
He was massaged and exercised, read to and examined by doctors from a different department. By the time we left this evening, he was starting to look annoyed and paranoid that more people were coming to poke and/or prod him. Fortunately, he handled everything pretty well, and had a good day on the ventilator. They've continued to lower his pressures and he's still doing four sprints a day, an hour each time.
His feedings have been increased to 9cc per hour, which is a good amount until he can get the stomach valve surgery. We're still waiting to see how he does with his respiratory issues before they schedule the stomach surgery. Though he's had a few good days in a row, his left lung could cause a problem (and need to be removed) at any point, and we're still dreading the next attempted extubation.
Everything considered, it's been a great week. We're not letting our enthusiasm overwhelm the harsh realities that he's still faced with, but it's been really nice to see him awake, behaving, and getting stronger.
At some point during the day, they got the results on cultures from a few days ago. His PICC line and arterial line both came back positive for some form of yeast, so they removed the PICC and replaced the arterial line. He's now getting almost everything through his central line (in his chest). He came off a couple of medications, so he's back to one row of IV pumps. They've also started to wean his steroid dosage....it will be a very slow process, but it's good that they're getting started.
He was massaged and exercised, read to and examined by doctors from a different department. By the time we left this evening, he was starting to look annoyed and paranoid that more people were coming to poke and/or prod him. Fortunately, he handled everything pretty well, and had a good day on the ventilator. They've continued to lower his pressures and he's still doing four sprints a day, an hour each time.
His feedings have been increased to 9cc per hour, which is a good amount until he can get the stomach valve surgery. We're still waiting to see how he does with his respiratory issues before they schedule the stomach surgery. Though he's had a few good days in a row, his left lung could cause a problem (and need to be removed) at any point, and we're still dreading the next attempted extubation.
Everything considered, it's been a great week. We're not letting our enthusiasm overwhelm the harsh realities that he's still faced with, but it's been really nice to see him awake, behaving, and getting stronger.
Stay the Course
Andrew is continuing the trend, doing well on low settings and getting upset pretty infrequently. He's now sprinting four times per day, twice with the night nurse and twice with the day nurse. None of his follow-up gases have been outside of parameters, and most have been on the very low end.
Today someone from Occupational Therapy came by and showed us some exercises to keep his arms strong and flexible. Apparently "OT is for the top, PT is for the bottom," meaning that Physical Therapy works the legs and torso, while Occupational Therapy works with the hands, eating, and other upper-half behaviors. He's wearing splints on his hands in order to keep his wrists strong....they're on a three-hours-on, three-hours-off schedule.
He's tolerated all of his new exercises and massages pretty well. Occasionally he gets a little overwhelmed and tells us he's in a bad mood....today during his sprint, he was simultaneously getting a breathing treatment and an upper body massage. Eventually he expressed his displeasure. More info this evening after they try him in his chair.
It looks like RSV season is under way, meaning that they'll soon shut down the NICU to all non-parent visitors. RSV is an upper respiratory virus that often spreads during flu season and can be very dangerous to the elderly and children with weak immune systems. Since that describes just about every baby in the the unit, they are particularly sensitive to any potential outbreaks. Starting in October every year (the exact date is different depending on RSV cases in the county) and ending in March or April, only parents are allowed into the unit...even our four-person visitor list is ineligible.
Today someone from Occupational Therapy came by and showed us some exercises to keep his arms strong and flexible. Apparently "OT is for the top, PT is for the bottom," meaning that Physical Therapy works the legs and torso, while Occupational Therapy works with the hands, eating, and other upper-half behaviors. He's wearing splints on his hands in order to keep his wrists strong....they're on a three-hours-on, three-hours-off schedule.
He's tolerated all of his new exercises and massages pretty well. Occasionally he gets a little overwhelmed and tells us he's in a bad mood....today during his sprint, he was simultaneously getting a breathing treatment and an upper body massage. Eventually he expressed his displeasure. More info this evening after they try him in his chair.
It looks like RSV season is under way, meaning that they'll soon shut down the NICU to all non-parent visitors. RSV is an upper respiratory virus that often spreads during flu season and can be very dangerous to the elderly and children with weak immune systems. Since that describes just about every baby in the the unit, they are particularly sensitive to any potential outbreaks. Starting in October every year (the exact date is different depending on RSV cases in the county) and ending in March or April, only parents are allowed into the unit...even our four-person visitor list is ineligible.
Oct 10, 2007
Trending Upward
Andrew has had a really good few days in a row. So good that the doctor expressed surprise today....not particularly heartening, but a little bit funny. They've continued to turn down the ventilator settings faster than they were expecting; he's at eight breaths per minute, which is minimal for this ventilator. They're now turning down the pressure support and extending the length and numbers of sprints. He's sprinting for just over an hour, twice a day, and they may soon move it to four times a day. They're actually a bit concerned that he's doing too well and not having to work hard enough. If he's not challenged by his breathing circumstances, the muscles he needs to use won't get enough exercise....extending the sprints should help with that.
The physical therapist came by and examined him today, checking his current condition and putting together a plan for getting him stronger. She showed us several exercises we can do with his legs to increase his range of motion and prevent his muscles from further atrophy. She showed us how his right leg is a bit stronger than the left, how to move his feet to give his ankles better flexibility, and the best positions to keep him in for further development. On Thursday, they'll put him in a specially-made chair to get him used to another position. Most NICU babies take a little while to get used to sitting up, so they don't anticipate a long first stay in the chair. Little by little, they'll increase the time he spends there.
Everything has been pretty positive during the last few days....good heart rate and blood pressure, no fever, increased feedings, and no major fits. That being said, this would be a good time to knock on wood. Andrew needs to string together a few of these good periods, as he'll eventually need to behave permanently.
The physical therapist came by and examined him today, checking his current condition and putting together a plan for getting him stronger. She showed us several exercises we can do with his legs to increase his range of motion and prevent his muscles from further atrophy. She showed us how his right leg is a bit stronger than the left, how to move his feet to give his ankles better flexibility, and the best positions to keep him in for further development. On Thursday, they'll put him in a specially-made chair to get him used to another position. Most NICU babies take a little while to get used to sitting up, so they don't anticipate a long first stay in the chair. Little by little, they'll increase the time he spends there.
Everything has been pretty positive during the last few days....good heart rate and blood pressure, no fever, increased feedings, and no major fits. That being said, this would be a good time to knock on wood. Andrew needs to string together a few of these good periods, as he'll eventually need to behave permanently.
Oct 9, 2007
Back to Informative Posts
I know it's been a few days since I actually provided some medical information, which may be good or bad, depending on your patience for my jargon. Andrew's had a few good days in a row, medically, and we're proud of him for handling everything so well. It must be disorienting and frustrating to be put to sleep for a month, and to wake up weak and unable to move like you remembered. Fortunately, he doesn't seem to be upset or in pain....he continues to be curious and interactive (when awake), and comfortable and relaxed (when asleep).
His lung function has been surprisingly good recently. The doctors planned to wean off of the ventilation very slowly, to give his muscles a chance to recover and get stronger. Though he still doesn't have anywhere near the muscle definition he used to, he is breathing pretty well, and has been able to wean quicker than expected. He started at 30 breaths per minute, but at one point was up to 40. Now he's down to 12 breaths per minute, which is nearing minimal levels. The pressure provided by the ventilator has also dropped significantly from its initial settings. Lastly, his oxygen rate has hovered between 26 and 40....he's still not near room air (21%), but he's doing well at these levels.
Since he's doing so well, and getting test results with especially low CO2 levels (for him), they decided to start sprinting him. Sprinting means turning off the breaths given by the ventilator and letting him breathe on his own. In order to overcome the difficulty of breathing through a tube, pressure is added during his breaths....they call this "pressure support." He started sprinting yesterday, one hour at night and one during the day. So far his blood test results (taken 20 minutes after the end of the sprint) have looked great. They'll probably increase the time and/or frequency over the next week.
He's still being fed steadily through his stomach tube. They've been keeping his feeding volumes pretty low recently, but are now starting to come back up. From 6cc per hour, it was dropped to 3 per hour, but has now steadily climbed back up to 7. It's good that he can get even this small level of milk, as that will help his digestive system stay active and efficient. The rest of his nutrition consists of IV nutrients and IV lipids (fats).
There were some unexpected issues that plagued Andrew last week. His rapid heart rate seems to have subsided, perhaps due to the drop in steroids. He can still get upset and raise his pulse, but his "upset level" is around 180, which is similar to what it used to be....when he had his issues last week, his heart rate was getting up into the 220's. He has also had an on-again-off-again fever recently. That fever seems to have gone away; he hasn't needed any medication for it and hasn't shown signs of an increased temperature in the last two days.
As you saw, D got to hold him on Sunday. It had been a long time, and was definitely a great treat. It's a huge pain to move him into her lap, because of all the tubes and wires; it took three nurses to get him situated without accidentally pulling out a line. Once he was in her arms, he looked right into her eyes for a few minutes, then got comfortable and fell asleep. He was asleep for over an hour, occasionally popping his eyes open (Surprise!) and then immediately going back to sleep. It would have been nice to hold him before he went back on isolation, so there could have been more skin-to-skin contact, but if wearing a big yellow gown means we get to hold him, then a big yellow gown it is.
Andrew is still very weak, and it will take a while for him to fully recover. Each day he moves a little bit more. First it was just his eyes, then his fingers, then his hands....now he's moving his arms up and down. He's probably at about 20% of his previous strength, which prevents him from pulling at his lines (a problem we used to face) but isn't very fun to watch. The physical therapists are going to come work with him, performing stretches and exercises that will help him regain his strength.
The long term plan is unchanged since last week. They'll give him the opportunity to get stronger, slowly weaning the ventilator, then continue the sprinting with increasing durations and frequency until he seems ready to be extubated. We don't expect that to happen in the next couple of weeks. The possibility still remains that he'll need to have a portion of his left lung removed, but so far it's behaving itself. He'll also need stomach valve surgery, which can be scheduled any time.....for now the focus is on getting him off the ventilator.
I promised more pictures, and I'll post some over the next couple of days. Since he's now awake and moving, I might post some new video as well. Hope everyone has a great week!
His lung function has been surprisingly good recently. The doctors planned to wean off of the ventilation very slowly, to give his muscles a chance to recover and get stronger. Though he still doesn't have anywhere near the muscle definition he used to, he is breathing pretty well, and has been able to wean quicker than expected. He started at 30 breaths per minute, but at one point was up to 40. Now he's down to 12 breaths per minute, which is nearing minimal levels. The pressure provided by the ventilator has also dropped significantly from its initial settings. Lastly, his oxygen rate has hovered between 26 and 40....he's still not near room air (21%), but he's doing well at these levels.
Since he's doing so well, and getting test results with especially low CO2 levels (for him), they decided to start sprinting him. Sprinting means turning off the breaths given by the ventilator and letting him breathe on his own. In order to overcome the difficulty of breathing through a tube, pressure is added during his breaths....they call this "pressure support." He started sprinting yesterday, one hour at night and one during the day. So far his blood test results (taken 20 minutes after the end of the sprint) have looked great. They'll probably increase the time and/or frequency over the next week.
He's still being fed steadily through his stomach tube. They've been keeping his feeding volumes pretty low recently, but are now starting to come back up. From 6cc per hour, it was dropped to 3 per hour, but has now steadily climbed back up to 7. It's good that he can get even this small level of milk, as that will help his digestive system stay active and efficient. The rest of his nutrition consists of IV nutrients and IV lipids (fats).
There were some unexpected issues that plagued Andrew last week. His rapid heart rate seems to have subsided, perhaps due to the drop in steroids. He can still get upset and raise his pulse, but his "upset level" is around 180, which is similar to what it used to be....when he had his issues last week, his heart rate was getting up into the 220's. He has also had an on-again-off-again fever recently. That fever seems to have gone away; he hasn't needed any medication for it and hasn't shown signs of an increased temperature in the last two days.
As you saw, D got to hold him on Sunday. It had been a long time, and was definitely a great treat. It's a huge pain to move him into her lap, because of all the tubes and wires; it took three nurses to get him situated without accidentally pulling out a line. Once he was in her arms, he looked right into her eyes for a few minutes, then got comfortable and fell asleep. He was asleep for over an hour, occasionally popping his eyes open (Surprise!) and then immediately going back to sleep. It would have been nice to hold him before he went back on isolation, so there could have been more skin-to-skin contact, but if wearing a big yellow gown means we get to hold him, then a big yellow gown it is.
Andrew is still very weak, and it will take a while for him to fully recover. Each day he moves a little bit more. First it was just his eyes, then his fingers, then his hands....now he's moving his arms up and down. He's probably at about 20% of his previous strength, which prevents him from pulling at his lines (a problem we used to face) but isn't very fun to watch. The physical therapists are going to come work with him, performing stretches and exercises that will help him regain his strength.
The long term plan is unchanged since last week. They'll give him the opportunity to get stronger, slowly weaning the ventilator, then continue the sprinting with increasing durations and frequency until he seems ready to be extubated. We don't expect that to happen in the next couple of weeks. The possibility still remains that he'll need to have a portion of his left lung removed, but so far it's behaving itself. He'll also need stomach valve surgery, which can be scheduled any time.....for now the focus is on getting him off the ventilator.
I promised more pictures, and I'll post some over the next couple of days. Since he's now awake and moving, I might post some new video as well. Hope everyone has a great week!
Oct 8, 2007
Bad News and Good News
Well, there's bad news and good news. The bad news is that Andrew's back on contact isolation, which means that we have to put on gloves and gowns every time we want to touch him (or anything in the room). Fortunately, that's the only bad news for the day...the good news is below:
That's right....D got to hold him today! It was a huge undertaking, with all his tubes and cords and sensors, but totally worth it. More about the process later.
Also later, an update on his respiratory progress (great gases, more vent weaning, and sprinting starting tomorrow!), a checkup on his fever/heart rate (recurrent fever under control, much better heart rate), and more pictures. I hope this picture, and the knowledge that we had a really nice day with him, will hold you over for now.
That's right....D got to hold him today! It was a huge undertaking, with all his tubes and cords and sensors, but totally worth it. More about the process later.
Also later, an update on his respiratory progress (great gases, more vent weaning, and sprinting starting tomorrow!), a checkup on his fever/heart rate (recurrent fever under control, much better heart rate), and more pictures. I hope this picture, and the knowledge that we had a really nice day with him, will hold you over for now.
Oct 7, 2007
Surgery Saturday (not for Andrew)
We didn't get to spend a whole lot of time in the NICU today, as it was a busy day for surgeries (on other babies). Luckily, he was awake and alert while we were there, so we got an hour and a half of good quality time. They turned down his ventilator some more, based on very good blood tests, and he's been breathing well. He's moving a little more every day, though it's mostly still small hand and arm movements, and some squirming in his legs and torso.
He's been having the same sort of repeating issues for the past several days....a high heart rate and/or a fever. They can treat each medically, and for the most part he's been better recently, but they have to pay close attention and catch it before it has a chance to get bad. When his temperature starts going up a bit, they cool a piece of gauze with some water and put it on his forehead. If it goes up further, then they give him some Tylenol. With his heart rate, they can give him medication, and generally try to keep him calm and relaxed. These solutions have worked well and kept him happy during the last few days.
Not much else to report today....time for bed.
He's been having the same sort of repeating issues for the past several days....a high heart rate and/or a fever. They can treat each medically, and for the most part he's been better recently, but they have to pay close attention and catch it before it has a chance to get bad. When his temperature starts going up a bit, they cool a piece of gauze with some water and put it on his forehead. If it goes up further, then they give him some Tylenol. With his heart rate, they can give him medication, and generally try to keep him calm and relaxed. These solutions have worked well and kept him happy during the last few days.
Not much else to report today....time for bed.
Oct 6, 2007
Fine Friday
Andrew seems to be doing better with the fever today. It came and went a few times last night and into this morning. The Tylenol seemed to do the job for a while, but it would return after the drugs wore off. After a couple of cycles, it seemed to go away entirely. They also had a cooled blanket that they were using to take the edge off and protect his vital organs. His temperature never got too high, and he was alert and unconcerned through much of it....he didn't even seem to notice that he had a fever.
He's continued to do well on the ventilator, occasionally having fits and needing more support, but generally trending toward better settings. He had a little leakage of stomach secretions around his feeding tube, so they've lowered the volume on his feedings temporarily. He's responded well to the decrease in steroids from a few days ago, and most of his remaining medications seem to be working as intended.
So far they're sticking with the current plan....focusing on getting his muscles stronger, weaning very slowly on the vent, and working toward extubation. It could take a month or more before he's ready to try being off the ventilator again, so we'll need to be patient and enjoy the fact that he's awake and interacting a bit again.
And for those who are wondering, I have no idea where the video below came from and I was just as shocked as all of you when I saw it. I have to assume the snake had been de-fanged from the baby's lack of reaction to the bites. I am always amazed by differences in culture that can result in something as foreign as this to Western sensibilities....I'm sure it's some common rite of passage, but it's certainly freaky to watch.
He's continued to do well on the ventilator, occasionally having fits and needing more support, but generally trending toward better settings. He had a little leakage of stomach secretions around his feeding tube, so they've lowered the volume on his feedings temporarily. He's responded well to the decrease in steroids from a few days ago, and most of his remaining medications seem to be working as intended.
So far they're sticking with the current plan....focusing on getting his muscles stronger, weaning very slowly on the vent, and working toward extubation. It could take a month or more before he's ready to try being off the ventilator again, so we'll need to be patient and enjoy the fact that he's awake and interacting a bit again.
And for those who are wondering, I have no idea where the video below came from and I was just as shocked as all of you when I saw it. I have to assume the snake had been de-fanged from the baby's lack of reaction to the bites. I am always amazed by differences in culture that can result in something as foreign as this to Western sensibilities....I'm sure it's some common rite of passage, but it's certainly freaky to watch.
Oct 5, 2007
Thursday Update
Andrew had an up-and-down day. On the up side, he's been taken off isolation, which means we no longer have to put on gloves and gowns before we enter his room. Today was the first time I've been able to touch him with my bare hands in almost two months. He also had a pretty good day of respiration, breathing well and recovering quickly when upset. The rest of his sedation was turned off and his steroid dosage was cut in half, both of which he responded to nicely.
We had a meeting with the on-call doctor as well. We didn't have many new questions since the last time we spoke to a doctor, and there wasn't a lot of new information. His left lung has inflated, but isn't causing problems; his right lung is still well-inflated and working well. He has some pretty severe muscle atrophy because of his long-term sedation and steroid treatments, so it will be a slow process to get him back up to speed and ready to extubate. The "accessory" muscles that CDH babies use in place of their missing diaphragm need to build their strength again, and until then they will be weaning the ventilator very slowly. Physical therapists will come work with his arms and legs to get his other muscles back in shape, and the simple act of removing the sedation will allow him to help himself.
This evening, some time between 6:30 and 9, Andrew spiked a fever. His heart rate was elevated and his temperature was up, though he was still breathing fine. They gave him some medication for his heart, acetaminophen and ibuprofen for the fever, and put ice packs around his head and groin areas as a precaution. The fever broke and his heart rate dropped in response to the medicines; his temperature never got high enough to do damage, and he was awake and calm through most of the process. An infection/fever certainly is never a good thing, but they got it under control quickly and he handled it well. He's now resting comfortably.
We had a meeting with the on-call doctor as well. We didn't have many new questions since the last time we spoke to a doctor, and there wasn't a lot of new information. His left lung has inflated, but isn't causing problems; his right lung is still well-inflated and working well. He has some pretty severe muscle atrophy because of his long-term sedation and steroid treatments, so it will be a slow process to get him back up to speed and ready to extubate. The "accessory" muscles that CDH babies use in place of their missing diaphragm need to build their strength again, and until then they will be weaning the ventilator very slowly. Physical therapists will come work with his arms and legs to get his other muscles back in shape, and the simple act of removing the sedation will allow him to help himself.
This evening, some time between 6:30 and 9, Andrew spiked a fever. His heart rate was elevated and his temperature was up, though he was still breathing fine. They gave him some medication for his heart, acetaminophen and ibuprofen for the fever, and put ice packs around his head and groin areas as a precaution. The fever broke and his heart rate dropped in response to the medicines; his temperature never got high enough to do damage, and he was awake and calm through most of the process. An infection/fever certainly is never a good thing, but they got it under control quickly and he handled it well. He's now resting comfortably.
Oct 4, 2007
We're All Allowed Bad Days....
After some off-blog feedback from my last post (Don't freak out....it was just a grumpy day), I realize that perhaps I sounded angry at the hospital or at Andrew's course of treatment. I'd like to clarify that in no way was my mood yesterday in any way related to misgivings about his care.....we have none. We are confident that he is getting the best care possible, and that the doctors are exploring all potential issues and treatment options, both within the hospital and without. My frustration yesterday was due to Andrew's bad day, my own fatigue, and a month's worth of missing his personality.
The other possible misconception I've noticed recently is the idea that the doctor's "don't know" what's going on with some aspects of Andrew's condition. For instance, if he has a high heart rate, I might say that they have no idea why his pulse is so high....this isn't entirely accurate. The real problem is that there are so many factors involved in his disease, it's often difficult to tell which factor is causing the problem at any given time. When it matters, the doctors run the appropriate test (x-ray, ultrasound, CT scan, blood test, mucus culture, etc.) to determine the precise issue. When it doesn't particularly matter, or the issue is a known and/or expected side effect, they treat it and move on. In those cases, they chalk it up to one of the following known issues....I've left in the medical terms for efficiency:
The other possible misconception I've noticed recently is the idea that the doctor's "don't know" what's going on with some aspects of Andrew's condition. For instance, if he has a high heart rate, I might say that they have no idea why his pulse is so high....this isn't entirely accurate. The real problem is that there are so many factors involved in his disease, it's often difficult to tell which factor is causing the problem at any given time. When it matters, the doctors run the appropriate test (x-ray, ultrasound, CT scan, blood test, mucus culture, etc.) to determine the precise issue. When it doesn't particularly matter, or the issue is a known and/or expected side effect, they treat it and move on. In those cases, they chalk it up to one of the following known issues....I've left in the medical terms for efficiency:
- 95% left-side diaphragmatic hernia
- severe pulmonary hypoplasia
- pulmonary hypertension
- intestinal malrotation (and corrective surgery)
- compressed right bronchus
- hyper-inflated left lung with decreased vasculature
- bronchospasms
- gastro-esophageal reflux
- long-term ventilation
- artificial nutrition
- narcotic addiction
- extended steroid use
- urinary tract infection
- staph and steno bacteria colonies
- muscle wasting from long-term paralysis
- I'm sure I'm forgetting several issues, but we can stop there
A Little Venting
Today was a bit discouraging. Andrew behaved himself last night and this morning, aside from some understandable oxygen desaturation when faced with a seriously dirty diaper and a chest ultrasound. The ultrasound was to check out his heart, because his pulse has been running a little high....the results were normal (no obvious problems). He's also been getting daily chest x-rays to keep track of his left lung. It's definitely inflated, and seems to not be doing anything useful, but hasn't hyperinflated to the point of pushing his heart into his right lung.
When we arrived, his heart rate was high, and stayed high for quite a while. When it finally started to come down, so did his oxygen saturation. When they turned up his oxygen to help his saturation, then his heart rate spiked again. It was a very odd phenomenon, because these would be normal results if he were upset and causing problems. However, his eyes were closed almost the entire time, and he didn't look particularly upset. It's tough to watch the numbers climb and the alarms go off, without having any idea about the cause. It's likely due to the decrease in his sedation, perhaps combined with some steroid reaction. They cut his sedation dosage in half, so it may take him a few days to get used to it.
His erratic behavior combined poorly with my lack of sleep from last night and put me in a pretty bad mood. Standing there at his bedside, hearing the alarms go off and trying not to fall asleep, it was hard not to get discouraged. Glancing around the NICU, it's painfully obvious how little progress Andrew has made in the last couple of months. The doctors have repeatedly told us that this is a long-term process, and that we have to focus on month-to-month progress rather than day- or week-long time scales. Well, he's definitely no better than a month ago...on the contrary, he has more medication and artificial nutrition, more lines and wires for IV drips, and significantly less stability. At the end of August, he was behaving pretty well, strong as a bull, sprinting for nine hours a day, and preparing to be extubated. Now he's been asleep for a month, all his muscles have atrophied, and he's having unexplained and erratic tachycardia (high heart rate) and high blood pressure. Combine this with what we know about his compressed right bronchus and useless left lung, and it's a bit sigh-inducing. Let's just say that it wasn't a pleasant hospital visit.
NOTE: Just before we left, his numbers started to level out, assisted by an extra dose of Ativan. He's been fine since then, all his blood tests have looked good, and he's behaving much better than he was earlier. The breathing rate, pressure, and oxygen levels being provided by the ventilator are all better than they were two days ago. He's fine, and in the short term they're not concerned about him having problems too severe to control with medication. The rest of this post sounded very dire and grim....though I can't say we're not worried about his chances of eventual recovery, I don't want to worry anybody unnecessarily. I just needed to take an opportunity to unload.
When we arrived, his heart rate was high, and stayed high for quite a while. When it finally started to come down, so did his oxygen saturation. When they turned up his oxygen to help his saturation, then his heart rate spiked again. It was a very odd phenomenon, because these would be normal results if he were upset and causing problems. However, his eyes were closed almost the entire time, and he didn't look particularly upset. It's tough to watch the numbers climb and the alarms go off, without having any idea about the cause. It's likely due to the decrease in his sedation, perhaps combined with some steroid reaction. They cut his sedation dosage in half, so it may take him a few days to get used to it.
His erratic behavior combined poorly with my lack of sleep from last night and put me in a pretty bad mood. Standing there at his bedside, hearing the alarms go off and trying not to fall asleep, it was hard not to get discouraged. Glancing around the NICU, it's painfully obvious how little progress Andrew has made in the last couple of months. The doctors have repeatedly told us that this is a long-term process, and that we have to focus on month-to-month progress rather than day- or week-long time scales. Well, he's definitely no better than a month ago...on the contrary, he has more medication and artificial nutrition, more lines and wires for IV drips, and significantly less stability. At the end of August, he was behaving pretty well, strong as a bull, sprinting for nine hours a day, and preparing to be extubated. Now he's been asleep for a month, all his muscles have atrophied, and he's having unexplained and erratic tachycardia (high heart rate) and high blood pressure. Combine this with what we know about his compressed right bronchus and useless left lung, and it's a bit sigh-inducing. Let's just say that it wasn't a pleasant hospital visit.
NOTE: Just before we left, his numbers started to level out, assisted by an extra dose of Ativan. He's been fine since then, all his blood tests have looked good, and he's behaving much better than he was earlier. The breathing rate, pressure, and oxygen levels being provided by the ventilator are all better than they were two days ago. He's fine, and in the short term they're not concerned about him having problems too severe to control with medication. The rest of this post sounded very dire and grim....though I can't say we're not worried about his chances of eventual recovery, I don't want to worry anybody unnecessarily. I just needed to take an opportunity to unload.
Oct 3, 2007
Even More Recent
Here are a few from today.....
Here's lookin' at you...
Still a lot of tubes and wires....
Recent Pics
Smushed face, but open eyes!
He only looks mad...he wasn't really.
From before he woke up, going for the spread-eagle look.
Last week he got a new room and a new bed.
'Roid Rage
Another day, another minor fit. This one was a bit different than yesterday's, consisting mostly of low oxygen saturation, high blood pressure, and high heart rate. He's gotten a couple of steroid doses recently, and the doctor decided this was most likely a combination of 'roid rage and narcotic withdrawal. He's now bigger and awake, and was still on dosages meant for a smaller baby. They've upped the dosage times and volumes on his Ativan and Methadone, in preparation for lowering the sedation tomorrow.
As far as respiration goes, he has been doing pretty well...they've continued to wean the pressure and rate on his ventilator, and should be able to lower it even more once his sedation is downgraded and he's breathing more on his own.
I don't have a whole lot else to report...he's been alert and friendly every time we've been there, but he still looks a little confused. He's also weak and well-sedated, so he's only really moving his eyes and fingers. We'll see how he does with fewer drugs. Until then, I'll make up for this short post by uploading some pictures. His face is still significantly swollen, and the tape on his tube is contorting his mouth into an odd position, but it's been wonderful to see his eyes open. We've been showing him books, staying in his line of sight, and putting him to sleep each day before we leave.
As far as respiration goes, he has been doing pretty well...they've continued to wean the pressure and rate on his ventilator, and should be able to lower it even more once his sedation is downgraded and he's breathing more on his own.
I don't have a whole lot else to report...he's been alert and friendly every time we've been there, but he still looks a little confused. He's also weak and well-sedated, so he's only really moving his eyes and fingers. We'll see how he does with fewer drugs. Until then, I'll make up for this short post by uploading some pictures. His face is still significantly swollen, and the tape on his tube is contorting his mouth into an odd position, but it's been wonderful to see his eyes open. We've been showing him books, staying in his line of sight, and putting him to sleep each day before we leave.
Oct 2, 2007
Dino-OK
Andrew had a great night/morning, a rough afternoon, and then a nice early evening. He's been laying on his stomach for the last few days, and they were concerned that his stomach tube was pressing on his abdomen and causing soreness. They flipped him onto his back this morning....he responded very well and was behaving well for the nurses. In the early afternoon, he started working harder to breathe, his oxygen saturation dropped, and his CO2 sensor started to spike. A blood test confirmed that his CO2 was very high, though he wasn't showing any outward signs of being upset. They turned up the pressure and rate on his ventilator and gave him an extra breathing treatment and he recovered, but it's a bit concerning that he had such a reaction for no known reason. A chest x-ray showed no major anatomical changes, so it wasn't a hyperinflation problem with his left lung....it could be an issue with his right bronchus, or simply airway spasms.
After that, he behaved very well. He was awake and happy when we got there, his follow-up gases were all normal, and he's been good ever since. His ventilator settings are back to where they were this morning, his oxygen is back at 30%, and he hasn't given a repeat performance. We had another nice visit with him, then left him sleeping peacefully. I'll post some pictures when I have a chance.
After that, he behaved very well. He was awake and happy when we got there, his follow-up gases were all normal, and he's been good ever since. His ventilator settings are back to where they were this morning, his oxygen is back at 30%, and he hasn't given a repeat performance. We had another nice visit with him, then left him sleeping peacefully. I'll post some pictures when I have a chance.
Oct 1, 2007
Dino-Tastic
Andrew was still awake when we got to the hospital. They haven't lowered his sedation at all (only the paralytic), so he's pretty out of it still, but he was able to move his fingers and toes, and definitely was looking around quite a bit. It was nice to see him awake again....it'll be four weeks tomorrow that he's been sedated and paralyzed. When we arrived, his heart rate was pretty high, though he wasn't showing any outward signs of being upset. We turned his music on and sat and talked with him for a little while....his heart rate lowered to a normal resting level. When D pulled out a book with pictures of dinosaurs, his eyes flickered all over the page. I also got some pictures, though I'm not sure how they turned out.
Before we left, we went through some range-of-motion exercises with his arms, massaged his arms and legs, and got a rainforest soother (it plays music and jungle noises) back into his crib. Just before leaving, I "hit the off button," which for him is a particular method of rubbing his head....it makes him fall right asleep. He was asleep and perfectly calm when we walked out the door.
He has continued to do well with his oxygen saturation and CO2 levels, and has been behaving well for the nurses. He's been stable and happy whenever we check in over the phone. We're not sure what the plan is for this week, but we'll have a meeting in a few days to discuss everything with the doctors.
Before we left, we went through some range-of-motion exercises with his arms, massaged his arms and legs, and got a rainforest soother (it plays music and jungle noises) back into his crib. Just before leaving, I "hit the off button," which for him is a particular method of rubbing his head....it makes him fall right asleep. He was asleep and perfectly calm when we walked out the door.
He has continued to do well with his oxygen saturation and CO2 levels, and has been behaving well for the nurses. He's been stable and happy whenever we check in over the phone. We're not sure what the plan is for this week, but we'll have a meeting in a few days to discuss everything with the doctors.
Subscribe to:
Posts (Atom)
Any idea how much weight he has gained or how long he is?