5:30pm: Pretty uneventful visit at the hospital today. He has been fluctuating between 45% and 50% all day and is currently at 48%. Met with the weekend doctor today and if all holds up over the next 12 hours, they are going to pull him off the paralytic tomorrow to see how he can handle being semi-awake. If he can handle that well, they will start weaning the pressures on the vent. Feedings were increased minimally to 7.5cc per hour.
7:00am: last night was the first stable night that we have seen in quite some time. Reid's O2 stayed at 45% the entire night, even when the nurse moved and adjusted him. Keep in mind he is still heavily drugged, but this is definitely progress!
Saturday, January 16, 2010
Friday, January 15, 2010
11:00pm: is tonight our night? So far, this is the news we have been waiting to hear. Every night, we call right before bed and cross our fingers that things are going well. Lisa, our nurse tonight, said that she had been waiting for us to call as she had good news for us. Right now, his O2 is at 45% and sat'ing at 97. She is ready to bump him down to 40%, but she was cautious and wanted to take things slow. He has had quite a lot of urine tonight, which can also help with the stress that body fluids can put on the lungs. So, a breath of fresh air tonight, but don't want to get over excited as we know what can happen. But, good news is good news and we will take everything we can get right now.
6:30pm: down to 65% O2 and sat'ing 95. They have made a change on his feedings in another attempt to keep him dry: 6cc milk fortified to 24 calorie and starting the hyperal again. They want to ensure that he is getting the most calories possible for him to continue to grow, while trying to restrict the amour of fluids that he is getting. During rounds today, he had had a group of about 6 that was composed of doctors, pharmacists, nutritionists, etc. And they feel like they have formulated the best nutrition possible for him.
On a lighter note, his chin and neck weigh about a pound and his hands look like those of a fat kid. I will post pictures later tonight when I am home. :). Hopefully we can get some of these fluids off of him soon so that he starts looking like our baby again.
2:30pm: Reid is on 75% oxygen and they ended up giving him a catheter to help relieve some of the excess fluids. With him being very sedated and paralyzed, his urine output is less than stellar. We are about to head into the hospital soon...
9:45am: Reid had an up and down night: O2 fluctuated from the 50s to the 80s and was currently on 80% when Kristen called. He had recently been turned onto his back and caused his levels to go slightly up. On a different front, it looks like Reid packed on some serious weight over the past few days. The nurses have attributed it to the fact that the nurcuron causes fluid retention and with him on nearly full feeds and being paralyzed (little caloric burn). They have dropped his feeds down to 11cc per hour to help compensate against the fact that he is retaining the fluids.
6:30pm: down to 65% O2 and sat'ing 95. They have made a change on his feedings in another attempt to keep him dry: 6cc milk fortified to 24 calorie and starting the hyperal again. They want to ensure that he is getting the most calories possible for him to continue to grow, while trying to restrict the amour of fluids that he is getting. During rounds today, he had had a group of about 6 that was composed of doctors, pharmacists, nutritionists, etc. And they feel like they have formulated the best nutrition possible for him.
On a lighter note, his chin and neck weigh about a pound and his hands look like those of a fat kid. I will post pictures later tonight when I am home. :). Hopefully we can get some of these fluids off of him soon so that he starts looking like our baby again.
2:30pm: Reid is on 75% oxygen and they ended up giving him a catheter to help relieve some of the excess fluids. With him being very sedated and paralyzed, his urine output is less than stellar. We are about to head into the hospital soon...
9:45am: Reid had an up and down night: O2 fluctuated from the 50s to the 80s and was currently on 80% when Kristen called. He had recently been turned onto his back and caused his levels to go slightly up. On a different front, it looks like Reid packed on some serious weight over the past few days. The nurses have attributed it to the fact that the nurcuron causes fluid retention and with him on nearly full feeds and being paralyzed (little caloric burn). They have dropped his feeds down to 11cc per hour to help compensate against the fact that he is retaining the fluids.
Thursday, January 14, 2010
2:30pm: Dr. Piazza, in his attempt to be more involved with Kristen and myself, gave me a call to touch base with where Reid stands:
1. Eyes: Good news is that he is at the same Stage and Zone as last week (and possibly slightly better if you look at the past several eye exams). The bad news is that we are not out of the woods yet, and will have another exam next week. He did mention that we are getting close to the cusp of being out of the danger zone though (in relation to his age and when it is no longer a concern).
2. Cultures: He came back positive (again) for Enterobacter even though he finished up his last dose of the current antibiotic the other day. After talking to Infectious Diseases, they had determined that the current antibiotic wasn't doing the job that it used to. This suggests that the bacteria may have slightly morphed and they are now giving another 10-day course of a new drug - gentamicin. Good that they found something, bad in the sense that he has to have his IVs (in addition to his central line) for another 10 days --- and we know how this kid goes through his IVs...
3. Pulmonary Hypertension: After reviewing his ECHOs over the past few weeks, Dr. Piazza is quite pleased as to the direction Reid has gone down. He suggests that the PPHN is no longer a factor in his poor oxygenation. He was previously thinking the other day that it may still play a role in his sickness and that is why he had gone up on the sildenafil once again. However, he is now second guessing himself and thinking that the sildenafil actually might have an adverse effect on the oxygenation. I don't think I understand the entire reason why, but it has something to do with the fact that the lungs have too much blood in them, and with Chronic Lung Disease, he is not capable of oxygenating all that blood at once. He is "scratching his head" and wondering if he should cut back on the dose of sildenafil.
12:15pm: So, the nurse lied to us and got her numbers mixed up when she told Kristen his O2 numbers this morning. He was in the 60s and 70s over the night (not 40s and 50s). How frustrating is that?!? He is currently at 65.
Eye test was this morning and we are good for one more week. Another test next Thursday.
9:15am: I don't have a lot of time to post, so I will keep this one short and sweet. His O2 fluctuated throughout the night ranging anywhere from the upper-50s and into the 40s. The nurse was up in the front of the NICU when Kristen called this morning, so she wasn't aware of the current number, but thought it was in the lower 50s. So, over night, he was able to gain at least 10 percentage points!
1. Eyes: Good news is that he is at the same Stage and Zone as last week (and possibly slightly better if you look at the past several eye exams). The bad news is that we are not out of the woods yet, and will have another exam next week. He did mention that we are getting close to the cusp of being out of the danger zone though (in relation to his age and when it is no longer a concern).
2. Cultures: He came back positive (again) for Enterobacter even though he finished up his last dose of the current antibiotic the other day. After talking to Infectious Diseases, they had determined that the current antibiotic wasn't doing the job that it used to. This suggests that the bacteria may have slightly morphed and they are now giving another 10-day course of a new drug - gentamicin. Good that they found something, bad in the sense that he has to have his IVs (in addition to his central line) for another 10 days --- and we know how this kid goes through his IVs...
3. Pulmonary Hypertension: After reviewing his ECHOs over the past few weeks, Dr. Piazza is quite pleased as to the direction Reid has gone down. He suggests that the PPHN is no longer a factor in his poor oxygenation. He was previously thinking the other day that it may still play a role in his sickness and that is why he had gone up on the sildenafil once again. However, he is now second guessing himself and thinking that the sildenafil actually might have an adverse effect on the oxygenation. I don't think I understand the entire reason why, but it has something to do with the fact that the lungs have too much blood in them, and with Chronic Lung Disease, he is not capable of oxygenating all that blood at once. He is "scratching his head" and wondering if he should cut back on the dose of sildenafil.
12:15pm: So, the nurse lied to us and got her numbers mixed up when she told Kristen his O2 numbers this morning. He was in the 60s and 70s over the night (not 40s and 50s). How frustrating is that?!? He is currently at 65.
Eye test was this morning and we are good for one more week. Another test next Thursday.
9:15am: I don't have a lot of time to post, so I will keep this one short and sweet. His O2 fluctuated throughout the night ranging anywhere from the upper-50s and into the 40s. The nurse was up in the front of the NICU when Kristen called this morning, so she wasn't aware of the current number, but thought it was in the lower 50s. So, over night, he was able to gain at least 10 percentage points!
Wednesday, January 13, 2010
10:30pm: Down to 62% O2!!! This little stinker is giving his father a heart attack.
Reid is officially a drug addict and has developed a strong resistance to the morphine and nurcuron. Not only is he on a drip of these two drugs, but he also gets the chloralhydrate at night so that he sleeps for at least 6 hours. Tonight, shortly after touch times when he was given the chloralhydrate, he was smacking/sucking on his ET tube and waiving his hand in the air. Between these three drugs, he should be **gone**. The nurse decided to give him an extra bolus of morphine and nurcuron and no more than 10 minutes later, he is doing the exact same thing. After talking with the nurse practitioner, they gave him yet another dose of both drugs.... and he is finally out for the count. Hope he doesn't expect mom and dad to hook him up with the drugs when he comes home. :) I don't like the fact that he is on so many medications, but if it is what it takes to get this guy home to us, so be it.
5:30pm: Down to 82% O2. Doctors think this is Chronic Lung Disease at it's finest... an up and down roller coaster.
2:45pm: I don't have a lot of news as I am catching it all second hand from a very brief conversation with Kristen (she is teaching today and I have been in back to back meetings), but Reid's O2 is back down to 88 and his BPM to 24. Recent blood gas test back well. Lowered his feedings to 12cc per hour to help keep him "dry".
I did some reading this morning about Gastroesophageal Reflux in Premature Infants as this is something that the doctor is keeping a watchful eye on. He is concerned that his feedings are causing aspirations into his lungs when he refluxes... and if you read the article, it shows that this can lead to respiratory infections. This is something that I want to further discuss with Dr. Piazza next time I see him as we are starting to see a trend (not sure if it is related) that when Reid starts feeling better, he resumes his feedings, and then the vicious cycle starts all over again. Hmmm...
5:30am: They have changed Reid's position to be on his stomach and his sats have come up marginally to the 93 to 95 range. They have also repositioned his ET tube and moved it slightly down 1.5cm to see if that would help but is only sat'ing 95.
Feeds are going to continue as the hyperal/iv fluids tend to make babies retain more fluids which could impact his lungs. The bowel sounds are still present so they are fairly confident that he is still moving his food along well.
If Reid doesn't make any changes in the next couple of hours, they are going to switch over from the vent to the high frequency (oscillator) -- which was something that they had talked about yesterday in our meeting. This machine, while not pretty, can actually remove some of the stress that the vent puts on the lungs by mechanically inflating and deflating the lungs.
I am heading to the airport now and wish I wasn't going, but if need be, I can always change my flight and come back early. It is only a 1.5 hr flight and can be back fairly quick.
4:30am: Still at 100% oxygen since last night's touch time and has been hovering in the 89 to 92% saturation range. They have done chest and stomach xrays and don't see anything different than what they saw in yesterday's xrays.
They were able to suction about 8cc of milky fluid out of his stomach which appeared to be a mixture of medicine and partially digested milk. Since he is being fed into his intestine and not his stomach, this shows that his bowel had refluxed some of the milk. They aren't sure if they are going to stop feeds yet.
Reid is officially a drug addict and has developed a strong resistance to the morphine and nurcuron. Not only is he on a drip of these two drugs, but he also gets the chloralhydrate at night so that he sleeps for at least 6 hours. Tonight, shortly after touch times when he was given the chloralhydrate, he was smacking/sucking on his ET tube and waiving his hand in the air. Between these three drugs, he should be **gone**. The nurse decided to give him an extra bolus of morphine and nurcuron and no more than 10 minutes later, he is doing the exact same thing. After talking with the nurse practitioner, they gave him yet another dose of both drugs.... and he is finally out for the count. Hope he doesn't expect mom and dad to hook him up with the drugs when he comes home. :) I don't like the fact that he is on so many medications, but if it is what it takes to get this guy home to us, so be it.
5:30pm: Down to 82% O2. Doctors think this is Chronic Lung Disease at it's finest... an up and down roller coaster.
2:45pm: I don't have a lot of news as I am catching it all second hand from a very brief conversation with Kristen (she is teaching today and I have been in back to back meetings), but Reid's O2 is back down to 88 and his BPM to 24. Recent blood gas test back well. Lowered his feedings to 12cc per hour to help keep him "dry".
I did some reading this morning about Gastroesophageal Reflux in Premature Infants as this is something that the doctor is keeping a watchful eye on. He is concerned that his feedings are causing aspirations into his lungs when he refluxes... and if you read the article, it shows that this can lead to respiratory infections. This is something that I want to further discuss with Dr. Piazza next time I see him as we are starting to see a trend (not sure if it is related) that when Reid starts feeling better, he resumes his feedings, and then the vicious cycle starts all over again. Hmmm...
5:30am: They have changed Reid's position to be on his stomach and his sats have come up marginally to the 93 to 95 range. They have also repositioned his ET tube and moved it slightly down 1.5cm to see if that would help but is only sat'ing 95.
Feeds are going to continue as the hyperal/iv fluids tend to make babies retain more fluids which could impact his lungs. The bowel sounds are still present so they are fairly confident that he is still moving his food along well.
If Reid doesn't make any changes in the next couple of hours, they are going to switch over from the vent to the high frequency (oscillator) -- which was something that they had talked about yesterday in our meeting. This machine, while not pretty, can actually remove some of the stress that the vent puts on the lungs by mechanically inflating and deflating the lungs.
I am heading to the airport now and wish I wasn't going, but if need be, I can always change my flight and come back early. It is only a 1.5 hr flight and can be back fairly quick.
4:30am: Still at 100% oxygen since last night's touch time and has been hovering in the 89 to 92% saturation range. They have done chest and stomach xrays and don't see anything different than what they saw in yesterday's xrays.
They were able to suction about 8cc of milky fluid out of his stomach which appeared to be a mixture of medicine and partially digested milk. Since he is being fed into his intestine and not his stomach, this shows that his bowel had refluxed some of the milk. They aren't sure if they are going to stop feeds yet.
Tuesday, January 12, 2010
11:15pm: There is something about the nights that Reid does not like. After his change of shift assessment, the nurse changed his position and he started to de-sat. We just got off the phone with them and he is currently at 100% oxygen and sat'ing 94. They increased the PEEP up to 9 to see if that would help. But we are going to give him a little bit of time to see if he can recover from the touching and change of position. Just have a bad feeling about tonight... and going to set my alarm so that I can call in and check. Just got finished with my conference call to India, going to finish packing and then it is bed time. An early morning awaits me. Ugh.
5:00pm: So, I guessed correctly. Our nurse from yesterday, who we absolutely love, talked to Dr. Piazza about how we liked to been kept more in the loop from a doctor perspective rather than getting some second hand information from the nurses and respiratory therapists. Not that they don't give us the info... Sometimes it is just more comforting to hear it straight from the horse's mouth and understand why things are being done the way they are. Hopefully we can have more access to the new doctor. And again, it's not that this guy isn't brilliant, but just has a different style of practicing than we are used to.
Nothing earth shattering came of the conversation this afternoon. He just walked us through where we are at and allowed us to ask as many questions as we wanted. Short term goal is to further wean his rate (BPM) and lower the pressures for extubation. He feels that since his CO2 levels are in check and that the O2 is the major thing they need to control, there are mechanisms other than the vent that can do the same work (i.e, CPAP). Today, we are sitting at 26 BPM and a PEEP of 8 (which has come down from 10 yesterday). If we can get to a rate of 18 to 20 and a PEEP of 6 or 7 **AND** Reid is stable, I think they will consider extubating him. The other big factor is that he will need to come off the heavy sedation and paralytic first.
They made a couple of changes today (outside of the vent changes): they reduced his feedings from 17cc to 15cc and put him on a nurcuron drip to keep a steady flow coming in rather than giving him boluses all the time. They were worried about his weight gain and fluid intake and want to make sure that he doesn't float away. Hopefully this is temporary and theycan pull him off the nurcuron soon.
We finally heard what was said during the meeting with pulmonology, and probably the reason we hadn't heard anything already was that there weren't any new recomendations other than going up on the sildenafil, which we already knew about. There is another drug that they are recommending if Reid takes another step back, which is called Bocitin?? that would have a similar effect that the sildenafil and nitric oxide have. We aren't there yet though.
Another surgical possibility in Reid's future would be to tighten the opening of the stomach to prevent reflux. They are concerned that he may be having "micro aspirations" of stomach acid and we have seen some of the effects on his respiratory condition when he does have a true reflux. Again, we aren't there yet either. But if he were to have this, they would most likely do the hernias as the same time.
We talked about the possibility of using the dexamethasone steroid again and he was curious to see if we had any other questions about it. He suggested that some of his colleagues may have already started to use them and he would do it now if we wanted him to, but he wants to give Reid another week to prove himself. This very potent steroid is usually used to treat serious respiratory inflamation and usually has huge success. The only concern is with the risk of having some neurological impacts. Studies have shown an increased risk of cerebral palsy in very sick, sub-25 week preemies when treated at birth for long periods of time. What the studies have never proved or ever even shown is what use of this drug does in small doses (4 to 6 days). Some recent literature shows it to be safe, but this is not a card that doctors like to use up front if they don't have to. The studies also don't show what kind of risk someone like Reid would face due to the fact that he is now over 4 months old and "mentally there". The studies also used patients that were probably already at high risk for developing neurological issues even before administration of the drug. So, the million dollar question is whether we will elect to use this drug when the time comes. And I think the answer is yes. I beleive that the risks of using it outweigh the risks of not using it, but we will cross that road when we get there.
Long story short, our goals for the next few days is to get below 50% oxygen, a BPM of 20, a PEEP of 7 and for Reid to come off the heavy sedation and paralytic. Then we can start worrying about extubation.
We are about to leave the NICU but were just told that a surgery is taking place and they forgot to get us out of here before they started. The nurse is trying to hide us because we really aren't supposed to be here so we have the curtains drawn in the room. Our little secret, but hopefully we won't be sitting here forever. Kristen has lesson plans to write, I need to get ready for DC tomorrow and I also have a call with my offshore team at 10:30. Ugh. Long night ahead of us.
12:30pm: Dr. Piazza called Kristen and asked if the three of us could meet today. It wasn't anything "urgent" but he did want to talk to us. Now my mind is wondering what he wants to talk about? Is it something good? Or bad? I did make a comment to our nurse last night that Dr. Piazza was a little more aloof than Dr. Moore and we didn't get a chance to talk to him that much... so I am hoping that is what spawned this afternoon's "meeting". Meeting at 4pm.
10:15am: Reid made it through the night without a budge on his vent. Good news that they didn't have to increase the O2, bad news that they weren't able to wean any further. But, knowing that he made a decrease of 40% yesterday, I will take a stable night! The nurse did have to give him two boluses of nurcuron this morning as he was awake and moving after 20 minutes of the initial dose. He did have two poopy diapers back to back and this caused him some agitation...
Not sure what time we are going into the NICU today. Kristen has to be on campus from 12 to 2 for a conference and the NICU warned us today that we should call in advance as they were slammed today. There was a baby going on ECMO and there are to be multiple surgeries, so I am sure the NICU is going to be locked down for a good portion of the day. Part of us wants to take a break from the daily routine, but I leave for DC tomorrow morning and won't be able to see him for a couple of days... and Kristen beats herself up if she doesn't go. So, I am sure we will make it at some point today --- maybe just later than normal.
So, not much news to report. But I guess that might be a good thing.
5:00pm: So, I guessed correctly. Our nurse from yesterday, who we absolutely love, talked to Dr. Piazza about how we liked to been kept more in the loop from a doctor perspective rather than getting some second hand information from the nurses and respiratory therapists. Not that they don't give us the info... Sometimes it is just more comforting to hear it straight from the horse's mouth and understand why things are being done the way they are. Hopefully we can have more access to the new doctor. And again, it's not that this guy isn't brilliant, but just has a different style of practicing than we are used to.
Nothing earth shattering came of the conversation this afternoon. He just walked us through where we are at and allowed us to ask as many questions as we wanted. Short term goal is to further wean his rate (BPM) and lower the pressures for extubation. He feels that since his CO2 levels are in check and that the O2 is the major thing they need to control, there are mechanisms other than the vent that can do the same work (i.e, CPAP). Today, we are sitting at 26 BPM and a PEEP of 8 (which has come down from 10 yesterday). If we can get to a rate of 18 to 20 and a PEEP of 6 or 7 **AND** Reid is stable, I think they will consider extubating him. The other big factor is that he will need to come off the heavy sedation and paralytic first.
They made a couple of changes today (outside of the vent changes): they reduced his feedings from 17cc to 15cc and put him on a nurcuron drip to keep a steady flow coming in rather than giving him boluses all the time. They were worried about his weight gain and fluid intake and want to make sure that he doesn't float away. Hopefully this is temporary and theycan pull him off the nurcuron soon.
We finally heard what was said during the meeting with pulmonology, and probably the reason we hadn't heard anything already was that there weren't any new recomendations other than going up on the sildenafil, which we already knew about. There is another drug that they are recommending if Reid takes another step back, which is called Bocitin?? that would have a similar effect that the sildenafil and nitric oxide have. We aren't there yet though.
Another surgical possibility in Reid's future would be to tighten the opening of the stomach to prevent reflux. They are concerned that he may be having "micro aspirations" of stomach acid and we have seen some of the effects on his respiratory condition when he does have a true reflux. Again, we aren't there yet either. But if he were to have this, they would most likely do the hernias as the same time.
We talked about the possibility of using the dexamethasone steroid again and he was curious to see if we had any other questions about it. He suggested that some of his colleagues may have already started to use them and he would do it now if we wanted him to, but he wants to give Reid another week to prove himself. This very potent steroid is usually used to treat serious respiratory inflamation and usually has huge success. The only concern is with the risk of having some neurological impacts. Studies have shown an increased risk of cerebral palsy in very sick, sub-25 week preemies when treated at birth for long periods of time. What the studies have never proved or ever even shown is what use of this drug does in small doses (4 to 6 days). Some recent literature shows it to be safe, but this is not a card that doctors like to use up front if they don't have to. The studies also don't show what kind of risk someone like Reid would face due to the fact that he is now over 4 months old and "mentally there". The studies also used patients that were probably already at high risk for developing neurological issues even before administration of the drug. So, the million dollar question is whether we will elect to use this drug when the time comes. And I think the answer is yes. I beleive that the risks of using it outweigh the risks of not using it, but we will cross that road when we get there.
Long story short, our goals for the next few days is to get below 50% oxygen, a BPM of 20, a PEEP of 7 and for Reid to come off the heavy sedation and paralytic. Then we can start worrying about extubation.
We are about to leave the NICU but were just told that a surgery is taking place and they forgot to get us out of here before they started. The nurse is trying to hide us because we really aren't supposed to be here so we have the curtains drawn in the room. Our little secret, but hopefully we won't be sitting here forever. Kristen has lesson plans to write, I need to get ready for DC tomorrow and I also have a call with my offshore team at 10:30. Ugh. Long night ahead of us.
12:30pm: Dr. Piazza called Kristen and asked if the three of us could meet today. It wasn't anything "urgent" but he did want to talk to us. Now my mind is wondering what he wants to talk about? Is it something good? Or bad? I did make a comment to our nurse last night that Dr. Piazza was a little more aloof than Dr. Moore and we didn't get a chance to talk to him that much... so I am hoping that is what spawned this afternoon's "meeting". Meeting at 4pm.
10:15am: Reid made it through the night without a budge on his vent. Good news that they didn't have to increase the O2, bad news that they weren't able to wean any further. But, knowing that he made a decrease of 40% yesterday, I will take a stable night! The nurse did have to give him two boluses of nurcuron this morning as he was awake and moving after 20 minutes of the initial dose. He did have two poopy diapers back to back and this caused him some agitation...
Not sure what time we are going into the NICU today. Kristen has to be on campus from 12 to 2 for a conference and the NICU warned us today that we should call in advance as they were slammed today. There was a baby going on ECMO and there are to be multiple surgeries, so I am sure the NICU is going to be locked down for a good portion of the day. Part of us wants to take a break from the daily routine, but I leave for DC tomorrow morning and won't be able to see him for a couple of days... and Kristen beats herself up if she doesn't go. So, I am sure we will make it at some point today --- maybe just later than normal.
So, not much news to report. But I guess that might be a good thing.
Monday, January 11, 2010
6:30pm: I am a fan of good news first, so, to start off, Reid has made some huge progress today and is currently at 60% O2. They made some changes and increased his inspiration time (.80 from .60) and lowered his rate to 28 BPM and his volume (PIP) to 27. He is currently sat'ing 97. Not only that, but he is also on his back --- he never does well on his back. Ready for the bad news? Well, there really isn't any. :)
Couple of new things worthy of noting though:
They had one of the pediatric fellows stop by and assess Reid since he is older than most babies they treat in te NICU. The only major thing that came of the discussion was they chose to do some more culturing. They have sent off bacterial, viral, microplasmas, whooping cough tests. And when they choose to do te whooping cough, the isolation rules change and we are now asked to wear surgical masks. Most of these tests are a stab in the dark, but they are looking for something.
Blood gas came back really good. CO2 was 36 with a pH of 7.49.
Breast milk feeds are up to 17cc per hour and are fortifying to 24 calories.
Increased sildenafil once again (7.2mg every 6 hours)
12:00pm: Finally... a little bit of good news. Reid had his ECHO and the unofficial word from tech was that there were no signs of the pulmonory hypertension. Bad news is that this leads us to assume that this spat is related purely to his lung disease and nothing else. The other bit of good news is that they have been able to make some adjustments on the vent (changed the pressures) and have subsequently been able to reduce the oxygen levels down to 92% and were hoping to continue to wean. I am hoping to get to the hospital before 3pm.
9:30am: Kristen called this morning around 7am and Reid is about the same as he was yesterday. They are administering the nurcuron about every 2 hours with the same results as yesterday. He is having an ECHO done this morning and a visit from pulmonology today.I am working from home today and was kind of weird watching Kristen get up before me and getting ready for work. Today is her first day teaching in over 6 months. Knock 'em dead, sweetie!
Sunday, January 10, 2010
7:00pm: Reid is continuing to get the boluses of nurcuron about every 3 hours or so, right when he starts to get cranky. This really seems to help him keep his sat's up, but he remains at 100% oxygen. After a recent blood gas test, they reduced his BPM from 46 to 44. Since he isn't being paralyzed 100% of the time, they are continuing to feed him his 16cc of milk per hour.
Dr. Metcalf and I exchanged emails today and I think he put this in a good perspective: "One of the issues we run into with older babies like Reid is that they are not happy being on the vent. It's a fine line between enough and too much sedation. He needs to be awake somewhat to allow his brain to be stimulated, but he requires a lot more oxygen when he's irritated. The fact that his brain is normal (a very good thing!) hinders him to an extent since he would rather be chomping on a pacie (or mom) rather than an ET tube. I truly wish I had an answer. In my experience, the fix is related more to time (and prayers) than anything we can do medically. Steroids and good ventilator management help, but usually supplement the time component."
Time is going to continue to march on... so keep those prayers coming. He needs every bit of help he can get!
** Dr. Metcalf --- I hope you don't mind me quoting you. :)
1:40pm: Reid had a worse night last night than he has had in a while. His oxygen requirements are at 100% and at times struggles to keep his saturations up. Over night, they had to use the bag to get his saturations up as they had dropped down into the 30s and 40s. The frustrating part of this is it appears that some of reason for this is Reid resisting the machines. I think he is old enough to know what is going on and, being a baby, will do what he wants to do.
They started giving boluses of nurcuron again today as that really seems to help and prevents him from fighting the vent. The problem with that is it only seems to work thirty minutes at a time.
Tomorrow, Reid will have another ECHO and a visit from the pulmonologist. Dr. Piazza seems to think that his levels of pulmonary hypertension have risen and this may be part of it as well. If this is the case, the nitric oxide may be used again. Also, there is some room for an increase in the sildenafil, which he increased today and another set of drugs as well.
So, we are anxiously awaiting the visits from the various doctors tomorrow. In the mean time, we will sit here in Reid's room in a ball of stress. Even the mind-numbing games on the iPhone don't seem to do their job anymore.
Dr. Metcalf and I exchanged emails today and I think he put this in a good perspective: "One of the issues we run into with older babies like Reid is that they are not happy being on the vent. It's a fine line between enough and too much sedation. He needs to be awake somewhat to allow his brain to be stimulated, but he requires a lot more oxygen when he's irritated. The fact that his brain is normal (a very good thing!) hinders him to an extent since he would rather be chomping on a pacie (or mom) rather than an ET tube. I truly wish I had an answer. In my experience, the fix is related more to time (and prayers) than anything we can do medically. Steroids and good ventilator management help, but usually supplement the time component."
Time is going to continue to march on... so keep those prayers coming. He needs every bit of help he can get!
** Dr. Metcalf --- I hope you don't mind me quoting you. :)
1:40pm: Reid had a worse night last night than he has had in a while. His oxygen requirements are at 100% and at times struggles to keep his saturations up. Over night, they had to use the bag to get his saturations up as they had dropped down into the 30s and 40s. The frustrating part of this is it appears that some of reason for this is Reid resisting the machines. I think he is old enough to know what is going on and, being a baby, will do what he wants to do. They started giving boluses of nurcuron again today as that really seems to help and prevents him from fighting the vent. The problem with that is it only seems to work thirty minutes at a time.
Tomorrow, Reid will have another ECHO and a visit from the pulmonologist. Dr. Piazza seems to think that his levels of pulmonary hypertension have risen and this may be part of it as well. If this is the case, the nitric oxide may be used again. Also, there is some room for an increase in the sildenafil, which he increased today and another set of drugs as well.
So, we are anxiously awaiting the visits from the various doctors tomorrow. In the mean time, we will sit here in Reid's room in a ball of stress. Even the mind-numbing games on the iPhone don't seem to do their job anymore.
Saturday, January 9, 2010
4:00pm: It has been a roller coaster ride of a day for Reid. He seems fairly quiet and peaceful, but the second he wakes up, his respiratory status goes down the toilet. We have been here since 1pm and for the most part, he has been at 100% O2.
His feeds are up to 16cc per hour (near full feeds) and he finally had another bowel movement at 3:30. He had a tiny one last night and they had to give him another suppository to get this one out of him. The morphine really does a number on him and plugs him up. His hyperal (TPN) will be stopped tonight.
His upper right lung appeared to be collapsed in this morning's xray and seems like he can't have a normal day anymore. Something has to happen...
They just turned his head to the other side and he seems to be tolerating it well. His O2 has come down to 85, but I have a feeling that it is going to be short lived.
They are going to start chloralhydrate tonight. Supposedly this should help him get some sleep and stay asleep. We will see...
Blood gas was just done. Everything looks good: CO2 is 63; PaO2 is 73; pH was normal.
Everything looks and sounds normal about him today and if you didn't look at his vent or his O2 sats, one might think he was having a good day.
His feeds are up to 16cc per hour (near full feeds) and he finally had another bowel movement at 3:30. He had a tiny one last night and they had to give him another suppository to get this one out of him. The morphine really does a number on him and plugs him up. His hyperal (TPN) will be stopped tonight.
His upper right lung appeared to be collapsed in this morning's xray and seems like he can't have a normal day anymore. Something has to happen...
They just turned his head to the other side and he seems to be tolerating it well. His O2 has come down to 85, but I have a feeling that it is going to be short lived.
They are going to start chloralhydrate tonight. Supposedly this should help him get some sleep and stay asleep. We will see...
Blood gas was just done. Everything looks good: CO2 is 63; PaO2 is 73; pH was normal.
Everything looks and sounds normal about him today and if you didn't look at his vent or his O2 sats, one might think he was having a good day.
Friday, January 8, 2010
5:30pm: Reid has had a crappy day. They have increased his feedings to 12cc but he hasn't had a bowel movement in over 2 days. He is pretty gaseous and had a glycerin at noon but still no poo. We think he is working on a monstrous load but we have yet to see the fruits of his labors. When he is asleep, his sats are good, but as soon as he wakes up he is bearing down and causes his sats to go down. We have been here since 2:30 and his oxygen has been between 80 and 95%. Currently, he is at 95. He had a bad blood gas at noon (83) but they just took another and it was back down to 60. This is a wean-able number and should be bringing his BPM down a little (web though they went up by 5 over night). We are about to head out - been a stressful visit and need to get some fresh air. Anxious to see what happens when he lightens his load.
11:30am: We have started to see a pattern over the past few days... Reid has a wide-awake, agitated night and a calming, sleepy day. He has his days and nights mixed up and seems to take the entire day to calm back down... to repeat it all over again 12 hrs later. Last night, his O2 was up in the mid-60s, but when we talked to the nurse this morning, he was already back down to 55% and she was fairly confident that they would be able to further wean him as he had calmed down. It is frustrating to see this pattern and what being awake and agitated means to his respiratory state.
Reid was weighed last night: 8lbs 10oz.
Kristen and I want to make our way into the NICU at some point early afternoon, but I am a little nervous as to the road conditions here in Atlanta. We had snow yesterday that left a lot of the roads with a thin coating of snow & ice. We will probably see if we can get out of our neighborhood, and if we can, we should be fine. Talking to the nurse this morning, she said the major roads were fine - it was the side roads that caused her some issues on her way into work. So, we will see...
11:30am: We have started to see a pattern over the past few days... Reid has a wide-awake, agitated night and a calming, sleepy day. He has his days and nights mixed up and seems to take the entire day to calm back down... to repeat it all over again 12 hrs later. Last night, his O2 was up in the mid-60s, but when we talked to the nurse this morning, he was already back down to 55% and she was fairly confident that they would be able to further wean him as he had calmed down. It is frustrating to see this pattern and what being awake and agitated means to his respiratory state.
Reid was weighed last night: 8lbs 10oz.
Kristen and I want to make our way into the NICU at some point early afternoon, but I am a little nervous as to the road conditions here in Atlanta. We had snow yesterday that left a lot of the roads with a thin coating of snow & ice. We will probably see if we can get out of our neighborhood, and if we can, we should be fine. Talking to the nurse this morning, she said the major roads were fine - it was the side roads that caused her some issues on her way into work. So, we will see...
Thursday, January 7, 2010
5:40pm: Real quick update while I am at the airport. My 8pm flight was cancelled and they got me on the 6pm instead. I think I have a pretty crappy seat, but at least I am going home. Snowing in Atlanta and about to start snowing in DC. Both of Reid's eyes are now Stage 2 Zone 3. Looking on the web, looks like he could go either way, but Stage 2 is still in the safe zone. His feedings have been increased to 8cc per hour and they are now giving him the diuretic every other day. They have cut the hydrocortisone in half. Kristen was able to talk to Dr. Piazza in regards to the side effects that I had seen, and I think he partially agreed. Not sure if he made the cut in dose in reaction to Kristen bringing it up, but I am glad to see the change in steroid. currently, his O2 has come down to 50%.
2:15pm: I wish that Reid could keep his IVs in longer... and after another one fell out today, he was stuck 10 times before they could find another one in his scalp. Currently, his O2 is up to 55, but they have weaned his BPM down to 37. And the good news for today, no change on the eye test, still at the same Stage/Zone as he was last week --- will check again in another 7 days.
8:00am: It would be taboo for Reid to continue to have good days and nights, so he decided to switch it up on us. He kept the nurse busy last night and seemed very agitated and the medicines (Ativan and Morhphine) aren't working as much anymore. He had a not-so-good blood gas test this morning and had to put his breaths per minute back up to 40 (I believe they were in the mid-20s prior to). However, his O2 has further come down to 40%. The IV that they gave him last night fell out (not sure what is going on there) so they ended up giving the morphine through his central line (which is supposedly not supposed to be mixed with the other things going through it). I guess the idea of the nurses trying to stick Reid again for another IV was probably not in their best interest. Right now (well, as of 5am), the nurse said Reid is practically snoring he is sleeping so hard. All of this activity wore him out.
I told Kristen about the side effects of the hydrocortisone and she was going to call the nurses here in a few minutes. Reid has tremors that shake his hands and feet (seizures), the IVs keep falling out (thin skin), vomiting, easy bleeds, black and tarry stool... personally, I think it is time that maybe they wean him off the steroid??
Nurse had done a blood test and was waiting on the blood counts to come back. If low, he will have yet another transfusion today.
Follow-up eye test is today.
And last but not least, please wish Kristen good luck today. She is making her way up to campus as she starts work for the first time in over 6 months. She is not teaching today, but trying to get everything prepared and ready for class on Monday. I know it is probably the last thing that she wants to deal with knowing Reid's situation, but getting back to a normal routine for her might be a good thing. Oh, and the money will be nice... the sugar daddy has run dry. :)
12:15am: I had no sooner finished writing the last blog and then got a call from Kristen in regards to Reid... so now I have another blog entry to write. This one isn't as fun. I will try to keep this one fairly short as I am quickly starting to fade... but Reid had another episode of vomiting tonight like he did on New Year's Eve (same brown substance that they are assuming is old blood). Kristen had spotted a brown stain on Reid's clothing earlier in the day and the nurse brushed if off as being a stain on the clothing. When the night nurse took over, she noticed that that stain went through several layers of his clothing and noticed it was from him. Shortly there after, he had several bouts of throwing up and then, with the help of a NG tube, they suctioned the remaining 15cc of fluid out of his stomach. The nurse had noticed that he seemed uncomfortable earlier in the shift and said that he was much more calm after all of it was out. They did another xray and saw that all of his tubes (ET, NJ, NG) were all in the correct place and there wasn't anything alarming. They have prescribed two additional medicines that will help with the ulcers and the coating of the stomach and bowels. They temporarily stopped the feedings during all of this, but have since resumed.
In addition to this mess, Reid had to have another IV put in tonight. I guess the one in his scalp was starting to go bad, so he has a new one in a different place on his scalp. The nurse did have to poke him 3 times to get the IV (he was heavily sedated with morphine at the time) but noticed that he was bleeding more than normal when they place these IVs. Tomorrow morning, he is going to have some blood work done to see if he is able to keep his blood counts up and see if there is anything else that might be alarming. I don't think they are overly concerned, but just want to make sure they aren't missing anything.
So, after Kristen told me all of this info... the only question I had in my head was about how far backwards we went in the oxygen requirements. And, to end this post on a good note: he was at 45%. It is good to know that he can have these sort of events and remain stable.
Doing some quick browsing about some of the meds that Reid is on, I came across the side effects of the hydrocortisone steroid. I have bolded the side effects he has. Wondering if all of this mess is from this drug??
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black, tarry stools; changes in body fat; changes in menstrual periods; changes in skin color; chest pain; easy bruising or bleeding; mental or mood changes (eg, depression); muscle pain, weakness, or wasting; swelling of feet or legs; seizures; severe nausea or vomiting; sudden severe dizziness or headache; symptoms of infection (eg, fever, chills, sore throat); tendon or bone pain; thinning of the skin; unusual skin sensation; unusual weight gain; vision changes or other eye problems; vomit that looks like coffee grounds.
2:15pm: I wish that Reid could keep his IVs in longer... and after another one fell out today, he was stuck 10 times before they could find another one in his scalp. Currently, his O2 is up to 55, but they have weaned his BPM down to 37. And the good news for today, no change on the eye test, still at the same Stage/Zone as he was last week --- will check again in another 7 days.
8:00am: It would be taboo for Reid to continue to have good days and nights, so he decided to switch it up on us. He kept the nurse busy last night and seemed very agitated and the medicines (Ativan and Morhphine) aren't working as much anymore. He had a not-so-good blood gas test this morning and had to put his breaths per minute back up to 40 (I believe they were in the mid-20s prior to). However, his O2 has further come down to 40%. The IV that they gave him last night fell out (not sure what is going on there) so they ended up giving the morphine through his central line (which is supposedly not supposed to be mixed with the other things going through it). I guess the idea of the nurses trying to stick Reid again for another IV was probably not in their best interest. Right now (well, as of 5am), the nurse said Reid is practically snoring he is sleeping so hard. All of this activity wore him out.
I told Kristen about the side effects of the hydrocortisone and she was going to call the nurses here in a few minutes. Reid has tremors that shake his hands and feet (seizures), the IVs keep falling out (thin skin), vomiting, easy bleeds, black and tarry stool... personally, I think it is time that maybe they wean him off the steroid??
Nurse had done a blood test and was waiting on the blood counts to come back. If low, he will have yet another transfusion today.
Follow-up eye test is today.
And last but not least, please wish Kristen good luck today. She is making her way up to campus as she starts work for the first time in over 6 months. She is not teaching today, but trying to get everything prepared and ready for class on Monday. I know it is probably the last thing that she wants to deal with knowing Reid's situation, but getting back to a normal routine for her might be a good thing. Oh, and the money will be nice... the sugar daddy has run dry. :)
12:15am: I had no sooner finished writing the last blog and then got a call from Kristen in regards to Reid... so now I have another blog entry to write. This one isn't as fun. I will try to keep this one fairly short as I am quickly starting to fade... but Reid had another episode of vomiting tonight like he did on New Year's Eve (same brown substance that they are assuming is old blood). Kristen had spotted a brown stain on Reid's clothing earlier in the day and the nurse brushed if off as being a stain on the clothing. When the night nurse took over, she noticed that that stain went through several layers of his clothing and noticed it was from him. Shortly there after, he had several bouts of throwing up and then, with the help of a NG tube, they suctioned the remaining 15cc of fluid out of his stomach. The nurse had noticed that he seemed uncomfortable earlier in the shift and said that he was much more calm after all of it was out. They did another xray and saw that all of his tubes (ET, NJ, NG) were all in the correct place and there wasn't anything alarming. They have prescribed two additional medicines that will help with the ulcers and the coating of the stomach and bowels. They temporarily stopped the feedings during all of this, but have since resumed.
In addition to this mess, Reid had to have another IV put in tonight. I guess the one in his scalp was starting to go bad, so he has a new one in a different place on his scalp. The nurse did have to poke him 3 times to get the IV (he was heavily sedated with morphine at the time) but noticed that he was bleeding more than normal when they place these IVs. Tomorrow morning, he is going to have some blood work done to see if he is able to keep his blood counts up and see if there is anything else that might be alarming. I don't think they are overly concerned, but just want to make sure they aren't missing anything.
So, after Kristen told me all of this info... the only question I had in my head was about how far backwards we went in the oxygen requirements. And, to end this post on a good note: he was at 45%. It is good to know that he can have these sort of events and remain stable.
Doing some quick browsing about some of the meds that Reid is on, I came across the side effects of the hydrocortisone steroid. I have bolded the side effects he has. Wondering if all of this mess is from this drug??
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black, tarry stools; changes in body fat; changes in menstrual periods; changes in skin color; chest pain; easy bruising or bleeding; mental or mood changes (eg, depression); muscle pain, weakness, or wasting; swelling of feet or legs; seizures; severe nausea or vomiting; sudden severe dizziness or headache; symptoms of infection (eg, fever, chills, sore throat); tendon or bone pain; thinning of the skin; unusual skin sensation; unusual weight gain; vision changes or other eye problems; vomit that looks like coffee grounds.
Wednesday, January 6, 2010
11:30pm: To continue with the quiet night that he had last night, Reid made some great progress on the vent... down to 46% oxygen. This is awesome news and a step in the right direction.Our respiratory therapist (and friend), Shelly, from Cobb Hospital came to visit Reid and Kristen today. With me being out of town, it was nice to know that Kristen had someone there to keep her company (and also have much needed "girl time"). She brought Reid a heatable stuffed dog (from the website: "Whenever you need a little pampering, cuddle up to your Lavender pet. So soft and cuddly, you can even microwave it for a minute for a warm, fragrant hug. A removable insert is filled with lavender to soothe, and flaxseed to hold the heat. They are washable, too. Remove insert to wash in cold water. A great gift for young and old! Lovingly hand-stuffed and finished in Sonoma, California."). Cool stuff if you ask me!!!
On a different note, I had a conversation with our new doctor today, Dr. Piazza in regards to the MRSA and other creatures that seem to be having a hay day in my son's lungs. I told him that I was fairly concerned about the MRSA and was afraid of what it meant for our future and asked him if I was being an over-reactive parent. To which he replied "yes". He didn't seem concerned with the MRSA and said that it is just something that Reid will have and usually after a few acute episodes, it usually goes dormant and colonizes and hopefully won't rear its head again. I also asked him the same question what I asked the nurse yesterday as to what caused our setback... E.coli. and Enterobacter (I linked to the wrong Wiki the other day). Again, after a few acute episodes of these, Reid is likely to have a colony of these living in him. 
So, my next question was that if Reid is susceptible to these organisms, how can we be proactive and treat them when they first appear, rather than waiting for Reid to show us that he is sick? Can we do routine respiratory mucus cultures to see if we can catch them early? Well, the way I understood it... since Reid is colonized, each of these bacterias will eventually grow in a petri dish. Growth doesn't necessarily mean that Reid is sick (since we now know this is a normal bacterial flora in him), so how do you know when to treat the bacteria and when not to? You can't. And we know what over use of antibiotics leads to... antibiotic resistant infections that would be eventually very difficult to treat (case in point: MRSA). So, long story short: Reid needs to get off the vent and get his IVs and central lines removed ASAP. Each of these items (especially the vent) are hard and fast ways of infection. I rambled there for a minute, so I hope you followed me.
On a different topic, Kristen was surprised today when she got into the NICU when she found Reid dressed in some clothes that looked somewhat less than manly. The point wasn't that he looked a little silly, more so that the nurse took the time to dig through the clothes they had at the hospital and put Reid in an outfit (a little since of normalcy, right?).Reid also had his second round of physical therapy today... this time he slept through the whole thing. In addition, he was sat'ing in the upper-90s (like 97 and 98). Guess we know what Reid likes, huh? Now, if his mother could only learn to fall asleep when I give her massages... instead, I get stuck doing them for longer than I really want to. :)
OK.. I think that is all that I can regurgitate right now. It is hard to remember all of these things when I hear them second-hand. I wish my wife would learn how to blog (hint, hint).5:25am: Remind me again why I am up already? Oh yeah... work. Ugh. Reid had a very quiet night. Not much to report other than the fact that they were able to go down to 55% oxygen! Woo Hoo!
Tuesday, January 5, 2010
10:15pm: Everything is status quo with Reid tonight. Still on 60% oxygen and fairly stable. He did resume breast milk feedings today (2cc every hour). Not much else to report tonight, so I am going to keep this post fairly short. I have a 7:25am flight tomorrow morning for DC and will be back on Thursday night. It is a quick trip and hopefully the snow that is supposed to arrive in Atlanta on Thursday won't keep me from coming back on time. Anyway, a couple of pictures from this afternoon's visit (mentally block out the tubes and tape and forget that his has crappy lungs and he is a perfect baby boy):
5:00pm: Reid took a trip in an isolette to radiology today to get his NJ tube replaced. Xray confirmed that the old one was in his stomach. Talking to the nurse, she said in radiology, they put him under a real-time xray so they can see the placement of the tube as the do it. It sounds like a two or three man job as they have to rotate the tube, rotate and flip Reid just to snake it down into his bowels. He did well and slept through the entire process.
We got to the hospital around 1:30 today and his room has been fairly quiet. His oxygen remains at 60, but the respiratory therapist is hopeful to break into 50s sometime today.
About 2:30, Reid started waking up and Kristen was able to hold him. He was quite a happy camper and was just looking all around. What he didn't know was he was in for another treat as a physical therapist came to visit. Kristen had put a bug in the nurse's ear yesterday ad she thought he looked a little stiff... so I guess you get what you ask for.
The therapist came in and watched him for about 15 minutes just to see how he handled stress, how he moved, and how he handled being touched. After she was comfortable with him, she worked on moving his hips, legs, arms, fingers and shoulders. She spent a good 30-45 minutes on him and you could tell that it did it's job as he was moving more on his own and making some movements that he normally doesn't do. She will probably visit a couple times a week to help him out, but she taught us how to stretch Reid on a daily basis. He handled all of the touching very well and kept his sats in the lower 90s the entire time. And just when the therapist was wrapping up, Reid zonked out. A little massage goes a long way.
I talked to his nurse today that has 30+ years experience and was questioning her about Reid's MRSA. I was a little confused as to why that colony could cause a huge step backwards and if this was something that we were going to be fighting for a long time to come. She is not convinced that it was the MRSA that caused us the issue four days back. She was under the impression that it had more to deal with the e. Coli and the enterbacter. I am starting to wonder if this was something that was introduced again when he was reintubated for his PDA ligation surgery???
10:15am: No major updates this morning... Reid had a stable night and he is at 60% oxygen. I believe he is to have a trip "downstairs" to radiology to have his nasojejunal tube replaced. Looking at the xrays, it appears that the tube may no longer be in his small bowel and most likely sitting at the bottom of his stomach. Once they can get it in place, they will resume feedings.
5:00pm: Reid took a trip in an isolette to radiology today to get his NJ tube replaced. Xray confirmed that the old one was in his stomach. Talking to the nurse, she said in radiology, they put him under a real-time xray so they can see the placement of the tube as the do it. It sounds like a two or three man job as they have to rotate the tube, rotate and flip Reid just to snake it down into his bowels. He did well and slept through the entire process.
We got to the hospital around 1:30 today and his room has been fairly quiet. His oxygen remains at 60, but the respiratory therapist is hopeful to break into 50s sometime today.
About 2:30, Reid started waking up and Kristen was able to hold him. He was quite a happy camper and was just looking all around. What he didn't know was he was in for another treat as a physical therapist came to visit. Kristen had put a bug in the nurse's ear yesterday ad she thought he looked a little stiff... so I guess you get what you ask for.
The therapist came in and watched him for about 15 minutes just to see how he handled stress, how he moved, and how he handled being touched. After she was comfortable with him, she worked on moving his hips, legs, arms, fingers and shoulders. She spent a good 30-45 minutes on him and you could tell that it did it's job as he was moving more on his own and making some movements that he normally doesn't do. She will probably visit a couple times a week to help him out, but she taught us how to stretch Reid on a daily basis. He handled all of the touching very well and kept his sats in the lower 90s the entire time. And just when the therapist was wrapping up, Reid zonked out. A little massage goes a long way.
I talked to his nurse today that has 30+ years experience and was questioning her about Reid's MRSA. I was a little confused as to why that colony could cause a huge step backwards and if this was something that we were going to be fighting for a long time to come. She is not convinced that it was the MRSA that caused us the issue four days back. She was under the impression that it had more to deal with the e. Coli and the enterbacter. I am starting to wonder if this was something that was introduced again when he was reintubated for his PDA ligation surgery???
10:15am: No major updates this morning... Reid had a stable night and he is at 60% oxygen. I believe he is to have a trip "downstairs" to radiology to have his nasojejunal tube replaced. Looking at the xrays, it appears that the tube may no longer be in his small bowel and most likely sitting at the bottom of his stomach. Once they can get it in place, they will resume feedings.
Monday, January 4, 2010
11:45pm: Kristen just called to check in on Reid. His oxygen settings are at 62% and holding steady. He apparently is in love with one of the toys that we brought in... it is a flower shaped soft toy that has different color lights on each of the pedals and when the music plays, the lights move and flash. When he gets upset, the nurse pushes it on and it seems to calm him. So, in addition to cricket noises, flashing lights and music work as well. :)
7:00pm: Most of Reid's cultures came back negative at the 48 hour mark, however, they have found that the MRSA has colonized and that is what caused Reid's setback (in addition to a Enterobacteriaceae colony). Frustratingly enough, they had treated the MRSA about a week and a half ago for 8 days and it had reared its head again. Looking on the web, it appears that once you have MRSA, it never really goes away and "colonizes". This means that Reid will most likely have these flair-ups many more times and probably means many trips to the ER after he comes home. The culture, while active in his body, won't necessarily always be an "infection"... and I assume it is going to take time before his body can defend the small colony in his body. Ugh.
His oxygen requirements haven't changed all that much since this morning. On average, they are hovering in the low-60s and during touch times (respiratory treatments, diaper change, etc), he requires about 80-85%, but is fairly quickly able to recover afterwards. So, if we don't touch him, or don't wake him up, he does just fine. :(
They have stopped the nurcuron (paralytic) and have resumed the morphine drip and will continue another 5 to 8 days. They have also dropped one of the antibiotics and are keeping 2 of them for 10 days for the MRSA treatment. Tomorrow, he will be on his max dose of Sildenafil (they have been gradually increasing his dose over the past week or so).
9:30am: Well, the initial reading on Reid's cultures have come back negative. Good news and bad news. Good news in the sense that he most likely doesn't need to fight off a nasty bug; bad news that they don't know what has caused this setback and we still have to wait for the final 48-72 hr readings (there could still be a very small infection that is taking a while to grow). Currently, his O2 is at 56% and his BPM at 26. The xray looked better today than it did yesterday (in the sense the lungs looked less collapsed) and they are going to try stretching the paralytic out to every three hours instead of every 2 like they did yesterday. The nurse last night had a little success with it, so they are going to see if they can continue on with that today.
7:00pm: Most of Reid's cultures came back negative at the 48 hour mark, however, they have found that the MRSA has colonized and that is what caused Reid's setback (in addition to a Enterobacteriaceae colony). Frustratingly enough, they had treated the MRSA about a week and a half ago for 8 days and it had reared its head again. Looking on the web, it appears that once you have MRSA, it never really goes away and "colonizes". This means that Reid will most likely have these flair-ups many more times and probably means many trips to the ER after he comes home. The culture, while active in his body, won't necessarily always be an "infection"... and I assume it is going to take time before his body can defend the small colony in his body. Ugh.
His oxygen requirements haven't changed all that much since this morning. On average, they are hovering in the low-60s and during touch times (respiratory treatments, diaper change, etc), he requires about 80-85%, but is fairly quickly able to recover afterwards. So, if we don't touch him, or don't wake him up, he does just fine. :(
They have stopped the nurcuron (paralytic) and have resumed the morphine drip and will continue another 5 to 8 days. They have also dropped one of the antibiotics and are keeping 2 of them for 10 days for the MRSA treatment. Tomorrow, he will be on his max dose of Sildenafil (they have been gradually increasing his dose over the past week or so).
9:30am: Well, the initial reading on Reid's cultures have come back negative. Good news and bad news. Good news in the sense that he most likely doesn't need to fight off a nasty bug; bad news that they don't know what has caused this setback and we still have to wait for the final 48-72 hr readings (there could still be a very small infection that is taking a while to grow). Currently, his O2 is at 56% and his BPM at 26. The xray looked better today than it did yesterday (in the sense the lungs looked less collapsed) and they are going to try stretching the paralytic out to every three hours instead of every 2 like they did yesterday. The nurse last night had a little success with it, so they are going to see if they can continue on with that today.
Sunday, January 3, 2010
9:15pm: Just got off the phone and Reid just had his nightly assessment and touch time where they removed his catheter. They had to move his O2 back up into the mid-70s but was confident that they would be able to wean him back down into the low-60s where he was prior to all the touching. As the nurse said tonight, Reid associates all touching as negative and it doesn't take much to set him off. His blood gasses continue to be good and they have reduced the pressure down to 31 and breaths per minute are at 28. Hopefully Reid will continue with his progress today and have a good night.
6:00pm: Reid was turned over on his back and is now only on 60% oxygen. We were nervous about him getting flippped but he seems to be handling it well.
2:45pm: We just had a gross meal at the hospital cafeteria and made our way up to Reid's room. Pleasantly surprised, he is at 70% oxygen and still sat'ing in the 96 to 98 range. His BPM is at 28 and is pressure at 33. The cultures have still not grown anything and he has been cleared of the respiratory viruses (RSV, H1N1, etc). This is good, but strange that they can't pinpoint what has caused this whole turn of events. But as long as he is still trending in the right direction, I am not going to get overly concerned.
9:00am: We aren't trying to get too excited just yet (as we know what happens when you get excited), but Reid had a decent night last night and they were able to wean his oxygen down to 83%. When we called this morning, the doctors were making rounds, so our call was very short. They did further wean some of the pressures and BPM on the vent, but we aren't sure what they were set to. Cultures haven't come back yet, so we are anxiously awaiting the results. More to come later this morning...
6:00pm: Reid was turned over on his back and is now only on 60% oxygen. We were nervous about him getting flippped but he seems to be handling it well.
2:45pm: We just had a gross meal at the hospital cafeteria and made our way up to Reid's room. Pleasantly surprised, he is at 70% oxygen and still sat'ing in the 96 to 98 range. His BPM is at 28 and is pressure at 33. The cultures have still not grown anything and he has been cleared of the respiratory viruses (RSV, H1N1, etc). This is good, but strange that they can't pinpoint what has caused this whole turn of events. But as long as he is still trending in the right direction, I am not going to get overly concerned.
9:00am: We aren't trying to get too excited just yet (as we know what happens when you get excited), but Reid had a decent night last night and they were able to wean his oxygen down to 83%. When we called this morning, the doctors were making rounds, so our call was very short. They did further wean some of the pressures and BPM on the vent, but we aren't sure what they were set to. Cultures haven't come back yet, so we are anxiously awaiting the results. More to come later this morning...
Saturday, January 2, 2010
11:20pm: I just called into the NICU and the nurse was putting in a new IV (his had fallen out) so I didn't get to talk to her, but the lady who answered the phone was able to get an update for me...
As a little background, early this morning, before we got to the hospital, Reid was on his back and was only sat'ing in the low 70s with 100% oxygen. Knowing that Reid loves being on his belly, they flipped him over and he immediately started sat'ing in the mid-80s (preemies with chronic lung disease oxygenate better on their stomachs for some odd reason). The bad part about being on their stomach is that they can't be kept there for extended periods of time as they start to develop bed sores and the tissue on their knees start to break down. To help battle this, they had put a very thin, pliable, clear type material on his knees to help protect as they knew he would most likely be there for awhile. Well, when we called at 9:15 tonight, they were about to flip him over onto his back again, and I just felt the stress starting to mount...
The good news was that he tollerated the flip very well and they change his bed lenins at the same time (he had drewled all over the other ones all day long). He maintained his saturations and they were even able to wean the oxygen down to 98% as he had been sat'ing in the 96 to 98 range!!!
The plan for tonight is to keep him fairly sedated. Normally, the dose of morphine and nurcuron should keep him immobile for about 2 hours, and they are now starting to notice him moving about 30-40 minutes into it. He has developed a strong tolerance to these meds and are having to give it to him more frequently. I am not sure if there are any side effect of doing this as these drugs are fairly safe for him, but the nurse this morning said that if we were to have the amount of drugs that he was getting, we would be knocked out for days. Don't know if that is a good or bad thing, but he is a fighter and is not giving up on us.
He worked really hard today and even though he was only able to gain a reduction of 2% on his oxygen requirements, that is a huge win in my book!
6:20pm: blood gas came back good. CO2 was at 39, pH came down to 7.42 and his PaO2 was at 63. Because of the good numbers, they have lowered his BPM to 40. If everything continues to look good, next gas won't be until 8:30. Current saturations are at 95 and holding steady - he did just get a dose of morphine, nucuron and ativan so he is out of it. He was awake for a good thirty minutes prior to the last dose, so we were able to see him move around and open his eyes.
5:30pm: I won't say that Reid has stabilized just yet, but he has had some very minor improvements and a fairly quiet afternoon. When we got in this morning, his saturations were in the low to mid 80s on 100% oxygen. He is currently satting in the low to mid 90s. They have made numerous changes on the vent as they have been over venting him (pulling his CO2 off). His CO2 readings have been about 30 which is causing his pH to go a little high. Without trying to rock the boat, they are taking very small steps. Currently, his PEEP is at 9, Pisp/pressure at 35, and bpm at 42. They are taking another gas here in a few minutes and hoping that his CO2 will go back up and his pH down. Current CO2 is 29 and current pH is at 7.55.
Reid was running a 100.2 degree temperature earlier and has now dropped a little low. This would be a sign of another infection, but the cultures will not be back until tomorrow morning at the earliest. They have sent off every culture possible (urine, blood, mucus, etc) and are testing for the whole gamut of infections and viruses (RSV, H1N1, etc). They have him on a very broad set of antibiotics right now and will tailor them down when and if a culture comes back positive for something.
Reid had a catheter put in about an hour ago. They had noticed a slight decrease in urine output with all of the medicines that he is on, so they wanted to make sure that with all the fluids he is also getting that he does get a chance to get rid of them and not cause and unnecessary pressures in his body.
Anyway, that is about it for now... Just a waiting game for now, but Dr. Moore said that he is silently happy right now with the small steps that Reid has made today.
11:30am: Dr. Moore just called and said that Reid is up to 100% oxygen and he is fairly concerned with where Reid is heading. They performed another ECHO to see if there was an issue with his PPHN and everything checked out OK. This leads him to believe that there may be another infection and has sent off for cultures. In the meantime, he has stopped feeds and back up 100% on the hyperal, increased his sedative (morphine), gave him a dose of paralytic (nurcuron) and started stress-level hydrocortisone. The vent is back up to 60 bpm. His left lung seems to be opened up and the right lung is still partially collapsed. Dr. Moore's biggest concerns is that if there isn't an infection, that this is purely a fault of his lungs. He would like to see some improvement within 24 hours and will closely monitor the cultures and then we will go from there.
10:00am: I wish I had better news, but Reid's status really hasn't changed. We called a couple of times over the night and again this morning, and he is requiring near 100% oxygen. As of 9:45am, he was at 99%. The doctors are still making their rounds and have yet to get to Reid, so we will call back in a little bit to see if they are going to make any adjustments. We were praying so hard for a good night last night, but unfortunately it didn't happen.
As a little background, early this morning, before we got to the hospital, Reid was on his back and was only sat'ing in the low 70s with 100% oxygen. Knowing that Reid loves being on his belly, they flipped him over and he immediately started sat'ing in the mid-80s (preemies with chronic lung disease oxygenate better on their stomachs for some odd reason). The bad part about being on their stomach is that they can't be kept there for extended periods of time as they start to develop bed sores and the tissue on their knees start to break down. To help battle this, they had put a very thin, pliable, clear type material on his knees to help protect as they knew he would most likely be there for awhile. Well, when we called at 9:15 tonight, they were about to flip him over onto his back again, and I just felt the stress starting to mount...
The good news was that he tollerated the flip very well and they change his bed lenins at the same time (he had drewled all over the other ones all day long). He maintained his saturations and they were even able to wean the oxygen down to 98% as he had been sat'ing in the 96 to 98 range!!!
The plan for tonight is to keep him fairly sedated. Normally, the dose of morphine and nurcuron should keep him immobile for about 2 hours, and they are now starting to notice him moving about 30-40 minutes into it. He has developed a strong tolerance to these meds and are having to give it to him more frequently. I am not sure if there are any side effect of doing this as these drugs are fairly safe for him, but the nurse this morning said that if we were to have the amount of drugs that he was getting, we would be knocked out for days. Don't know if that is a good or bad thing, but he is a fighter and is not giving up on us.
He worked really hard today and even though he was only able to gain a reduction of 2% on his oxygen requirements, that is a huge win in my book!
6:20pm: blood gas came back good. CO2 was at 39, pH came down to 7.42 and his PaO2 was at 63. Because of the good numbers, they have lowered his BPM to 40. If everything continues to look good, next gas won't be until 8:30. Current saturations are at 95 and holding steady - he did just get a dose of morphine, nucuron and ativan so he is out of it. He was awake for a good thirty minutes prior to the last dose, so we were able to see him move around and open his eyes.
5:30pm: I won't say that Reid has stabilized just yet, but he has had some very minor improvements and a fairly quiet afternoon. When we got in this morning, his saturations were in the low to mid 80s on 100% oxygen. He is currently satting in the low to mid 90s. They have made numerous changes on the vent as they have been over venting him (pulling his CO2 off). His CO2 readings have been about 30 which is causing his pH to go a little high. Without trying to rock the boat, they are taking very small steps. Currently, his PEEP is at 9, Pisp/pressure at 35, and bpm at 42. They are taking another gas here in a few minutes and hoping that his CO2 will go back up and his pH down. Current CO2 is 29 and current pH is at 7.55.
Reid was running a 100.2 degree temperature earlier and has now dropped a little low. This would be a sign of another infection, but the cultures will not be back until tomorrow morning at the earliest. They have sent off every culture possible (urine, blood, mucus, etc) and are testing for the whole gamut of infections and viruses (RSV, H1N1, etc). They have him on a very broad set of antibiotics right now and will tailor them down when and if a culture comes back positive for something.
Reid had a catheter put in about an hour ago. They had noticed a slight decrease in urine output with all of the medicines that he is on, so they wanted to make sure that with all the fluids he is also getting that he does get a chance to get rid of them and not cause and unnecessary pressures in his body.
Anyway, that is about it for now... Just a waiting game for now, but Dr. Moore said that he is silently happy right now with the small steps that Reid has made today.
11:30am: Dr. Moore just called and said that Reid is up to 100% oxygen and he is fairly concerned with where Reid is heading. They performed another ECHO to see if there was an issue with his PPHN and everything checked out OK. This leads him to believe that there may be another infection and has sent off for cultures. In the meantime, he has stopped feeds and back up 100% on the hyperal, increased his sedative (morphine), gave him a dose of paralytic (nurcuron) and started stress-level hydrocortisone. The vent is back up to 60 bpm. His left lung seems to be opened up and the right lung is still partially collapsed. Dr. Moore's biggest concerns is that if there isn't an infection, that this is purely a fault of his lungs. He would like to see some improvement within 24 hours and will closely monitor the cultures and then we will go from there.
10:00am: I wish I had better news, but Reid's status really hasn't changed. We called a couple of times over the night and again this morning, and he is requiring near 100% oxygen. As of 9:45am, he was at 99%. The doctors are still making their rounds and have yet to get to Reid, so we will call back in a little bit to see if they are going to make any adjustments. We were praying so hard for a good night last night, but unfortunately it didn't happen.
Friday, January 1, 2010
5:30pm: A pretty quiet day in the NICU today. Reid was on 92% oxygen when we got here today, but has since been flipped onto his belly (which he loves) and is now at 86%. We were able to look at his xray today and it appears that both upper portions of his lungs are collapsed. They have increased the PEEP (pressure) to 8 on the vent in hopes to open them up, but not sure it is working. They just gave him a bolus of morphine and he is now three sheets to the wind.
Just a very somber day today. It is a beautiful day outside and we saw lots of families riding their bikes, strolling along in the park and, in general, enjoying their new years day. Wish that we had something more to be excited about and could be out there enjoying the day too, but I guess we will try for next year. Anyone as interested in joining us for hospital cafeteria food for new years dinner? Haha. :)
10:30am: I wish that when I woke up this morning I felt happy about it being the new year, but I think that Kristen and I are just so emotionally drained with Reid's situation that it is hard to get excited about anything right now. Thanksgiving, Christmas and now New Years have come and gone and for the life of us, we can't even start to remember where all of this time has gone. Reminiscing over 2009, I told Kristen last night that 2009 was not only the best year of my life with Reid being born, but it was also the worst year of my life with what we have had to go through (between Kristen's horrible pregnancy and now Reid's fight with his lung disease). We can only hope that God brings us a better 2010 and Reid is able to fight off his sickness. Reid is such a beautiful, happy baby and continues to prove that he is a strong fighter... he just deserves so much more than what he was dealt.
Last night proved to be another difficult night as Reid's oxygen requirements hovered between 80 and 100%. At 10pm, they had finally weaned him off his morphine and have now started the methadone (a milder sedative) that they will use to get Reid off of all pain killers. They are giving boluses of morphine when they think that he really needs it, but they are trying hard to get him off of everything. I think he is just much more aware of what is going on now and is very agitated and is not feeling well. Because of this, he is requiring much more support. His bpm is still at 53 and have not touched any of the settings on the vent other than his oxygen amounts.
We are starting to get concerned that Reid is not responding well over the past few days. Realistically, he should be "healed" from the surgery and should not be experiencing any further pain from it. Talking to Dr. Moore yesterday, he said that Reid's only short term goal right now is to get him off the vent...they aren't even concerned with his hernias right now and just need to get the tube out of his mouth. The longer he stays on the vent, the further damage it can do to his lungs. If he continues at this pace, after 2 weeks, they may look at giving him a 3 to 5 day treatment of dexamethasone. This steroid has a lot of potential negative side effects (mostly impacting brain growth), so it is used with caution. Dr. Moore was quick to point out that the studies on this drug were from many years ago where doctors commonly used this drug for 42 days in a row. Nonetheless, it is not something that we want to have to use, but if it is the only way for Reid to get off the vent, we may have to go down that path.
Reid had another eye exam yesterday and it appears that laser surgery may be in the near future. I think this last exam showed some small growth in the wrong direction and will do another follow up in 7 days (next Thursday). This doesn't mean that he will definitely have the surgery, just that it is probably more likely than it was last week. Talking to Dr. Moore yesterday though, he said that babies usually stop having ROP issues when they are 40 to 45 weeks corrected gestational age. Reid is 43 weeks as of this past Wednesday. Maybe this is part of my wishful thinking, but if Reid can hold on for another couple of weeks, maybe we are out of the woods???
Hernia surgery seems to be the least of doctors concerns right now and they honestly only talk about it when we bring it up.
As far as timeline goes, I asked Dr. Moore if he could pull out his crystal ball and predict the future for us. We want to know when Reid will be able to come home, but we also realize that whatever he said would be an educated guess. Kristen and I had set a date of April 2010 as to when he would be able to come home by, and when we told Dr. Moore of this date, he said it probably wasn't too far off. Depending on how quick Reid can get off the vent, it could be a little sooner. But in the same breath, he said it could be later than that. So, we are sticking April in the ground as our target date even though that is four months away... meaning that we are only half way there as Reid turns 4 months old tomorrow.
Reid was weighed again last night and is in the neighborhood of 8.5 lbs. He probably got wiped down fairly good too as he had thrown up all over himself last night. They had to change out his NeoBar that holds his breathing tube in place as the adhesive had been fairly soiled. He did not have any further vomiting episodes last night, but that may be partly due to the fact that they put a tube down his stomach to vent and pull out any remaining fluids. They got minimal brown fluid and thought that he had probably thrown up most of it on his own.
Anyway, I could probably go on and on with what Dr. Moore, Kristen and I covered in the hour and a half conference yesterday, but a lot of it was hypothetical, what-if's, worse case scenarios, etc that are not fun topics to discuss. He wasn't suggesting that Reid was going down any of these paths, but he wanted us to be aware of all of the various roads that we may end up crossing. He said it is better to be aware of them up front than get into a sticky situation and not be prepared for it if the time came. I will spare you some of the details as I am hoping to get some of the visuals out of my head this morning.
All I want to do today is crawl into bed, watch movies and make my mind numb to the world. Dealing with this situation on a daily basis wears on your mind and body and we so desperately need Reid to have a break one of these days. Please let 2010 be OUR year!
Just a very somber day today. It is a beautiful day outside and we saw lots of families riding their bikes, strolling along in the park and, in general, enjoying their new years day. Wish that we had something more to be excited about and could be out there enjoying the day too, but I guess we will try for next year. Anyone as interested in joining us for hospital cafeteria food for new years dinner? Haha. :)
10:30am: I wish that when I woke up this morning I felt happy about it being the new year, but I think that Kristen and I are just so emotionally drained with Reid's situation that it is hard to get excited about anything right now. Thanksgiving, Christmas and now New Years have come and gone and for the life of us, we can't even start to remember where all of this time has gone. Reminiscing over 2009, I told Kristen last night that 2009 was not only the best year of my life with Reid being born, but it was also the worst year of my life with what we have had to go through (between Kristen's horrible pregnancy and now Reid's fight with his lung disease). We can only hope that God brings us a better 2010 and Reid is able to fight off his sickness. Reid is such a beautiful, happy baby and continues to prove that he is a strong fighter... he just deserves so much more than what he was dealt.
Last night proved to be another difficult night as Reid's oxygen requirements hovered between 80 and 100%. At 10pm, they had finally weaned him off his morphine and have now started the methadone (a milder sedative) that they will use to get Reid off of all pain killers. They are giving boluses of morphine when they think that he really needs it, but they are trying hard to get him off of everything. I think he is just much more aware of what is going on now and is very agitated and is not feeling well. Because of this, he is requiring much more support. His bpm is still at 53 and have not touched any of the settings on the vent other than his oxygen amounts.
We are starting to get concerned that Reid is not responding well over the past few days. Realistically, he should be "healed" from the surgery and should not be experiencing any further pain from it. Talking to Dr. Moore yesterday, he said that Reid's only short term goal right now is to get him off the vent...they aren't even concerned with his hernias right now and just need to get the tube out of his mouth. The longer he stays on the vent, the further damage it can do to his lungs. If he continues at this pace, after 2 weeks, they may look at giving him a 3 to 5 day treatment of dexamethasone. This steroid has a lot of potential negative side effects (mostly impacting brain growth), so it is used with caution. Dr. Moore was quick to point out that the studies on this drug were from many years ago where doctors commonly used this drug for 42 days in a row. Nonetheless, it is not something that we want to have to use, but if it is the only way for Reid to get off the vent, we may have to go down that path.Reid had another eye exam yesterday and it appears that laser surgery may be in the near future. I think this last exam showed some small growth in the wrong direction and will do another follow up in 7 days (next Thursday). This doesn't mean that he will definitely have the surgery, just that it is probably more likely than it was last week. Talking to Dr. Moore yesterday though, he said that babies usually stop having ROP issues when they are 40 to 45 weeks corrected gestational age. Reid is 43 weeks as of this past Wednesday. Maybe this is part of my wishful thinking, but if Reid can hold on for another couple of weeks, maybe we are out of the woods???
Hernia surgery seems to be the least of doctors concerns right now and they honestly only talk about it when we bring it up.
As far as timeline goes, I asked Dr. Moore if he could pull out his crystal ball and predict the future for us. We want to know when Reid will be able to come home, but we also realize that whatever he said would be an educated guess. Kristen and I had set a date of April 2010 as to when he would be able to come home by, and when we told Dr. Moore of this date, he said it probably wasn't too far off. Depending on how quick Reid can get off the vent, it could be a little sooner. But in the same breath, he said it could be later than that. So, we are sticking April in the ground as our target date even though that is four months away... meaning that we are only half way there as Reid turns 4 months old tomorrow.
Reid was weighed again last night and is in the neighborhood of 8.5 lbs. He probably got wiped down fairly good too as he had thrown up all over himself last night. They had to change out his NeoBar that holds his breathing tube in place as the adhesive had been fairly soiled. He did not have any further vomiting episodes last night, but that may be partly due to the fact that they put a tube down his stomach to vent and pull out any remaining fluids. They got minimal brown fluid and thought that he had probably thrown up most of it on his own.
Anyway, I could probably go on and on with what Dr. Moore, Kristen and I covered in the hour and a half conference yesterday, but a lot of it was hypothetical, what-if's, worse case scenarios, etc that are not fun topics to discuss. He wasn't suggesting that Reid was going down any of these paths, but he wanted us to be aware of all of the various roads that we may end up crossing. He said it is better to be aware of them up front than get into a sticky situation and not be prepared for it if the time came. I will spare you some of the details as I am hoping to get some of the visuals out of my head this morning.
All I want to do today is crawl into bed, watch movies and make my mind numb to the world. Dealing with this situation on a daily basis wears on your mind and body and we so desperately need Reid to have a break one of these days. Please let 2010 be OUR year!
Thursday, December 31, 2009
8:00pm: We had a long visit with Reid today as we got there at 2 and just now getting home at 8. I don't have time to post a long blog but there is a ton that I want to put up here, so it might have to wait until later tonight or tomorrow morning. Quickly though:
- We met with Dr. Moore for an hour and a half today, so there are a lot of details I want to share and document.
- Reid had his eye exam this afternoon and will have a follow up next week (laser surgery looks to be in our near future).
- Kristen finally got to hold Reid today after almost 2.5 weeks and was able to have him snuggle in her arms for about an hour.
- We had a little scare at the end of our visit when Reid decided to vomit three or four times (fairly large amounts) --- the vomit was brown in color and appeared to be old blood. The medicines that he is on and the stress that he is under can cause ulcers. He had a quick xray and everything appeared normal, so there wasn't a whole lot of concern. He will be put on an Zantac to help with this, but while it was all happening, he had his eyes open and his oxygen saturations stayed in the mid-90s. Maybe after he got it all up, he felt a little better?
Tuesday, December 29, 2009
10:00pm: Not much changed today on the vent settings, but Reid had a fairly stable day. Talking to Dr. Moore, they think that the previous change from pressure support to volume support had a fairly significant impact on Reid. With the change back to pressure support, they will keep it there for the remainder of the time. As of 9:45 tonight, the only change that had been made was the level of oxygen, which was at 60%. His gas tests looked good (pH of 7.31 and CO2 of 67).Reid had an ECHO done today and they had seen some improvements with the hypertension. Blood flow looked good, the walls of his heart looked good (no bowing of the walls) and Dr. Moore was pleased with the results. He suggested that it was probably a combination of the PDA surgery as well as the use of the NO. With that being said, they are increasing the dose of Sildenafil (Viagra) --- they will be going up by about .2mg a day until he reaches the max dose of 1mg per kilo (3mg). They have to be careful with how much they increase over a short period of time as there can be some adverse side effects with dropping of the systemic blood pressure. He assumed that Reid would eventually reach a level where they would need to back off for a day or two on the increase and let him adjust before going up some more. Research has shown this drug to do wonders for Reid's condition and this is something that he would be able to go home on if needed.
We talked to Reid's nurse today (Barbara, our favorite Egleston nurse) in regards to how he compares to a newborn baby. Much to our surprise, she said that he was probably just short of being equal to a full term baby. I would have thought that over the past 4 months of his life that he would may be be a little up on a full term baby, but I guess I was wrong. She gave us a sheet of paper of things that we can expect for Reid to be able to do and things that we should do to help stimulate his brain. One of the suggestions was for us to get a helium balloon that shines, moves and has good contrast of colors for his bedside. Thomas the Train did just the job for us. :)Reid was on 5cc per hour feeds today and seemed to continue to handle it well. They currently have his feeding tube sitting below the bottom of his stomach and in top of his intestines. They are hoping that this will help with reflux (which causes him to have some breathing issues). Once they get to full feeds (~18cc per hour), they will pull the feeding tube out just a little bit so that it sits in his stomach to see how he does. They are anxious to see how the feedings are going to impact his hernias. To date, they have not seen the hernia since they stopped feeding him about 2 weeks ago. And if they show up again (which I am expecting them to do), they will monitor it on a daily basis and only do surgery if they are difficult to reduce. I think I may have written this yesterday or the day before, but the hernias are the least of their concern and want to purely focus on his respiratory issues as long as they can without an additional surgery coming in his way.
Tonight, Reid had his first bowel movement in about 2 weeks and it was a good one! They had given him a little sliver of glycerine to see what would happen... and he was able to make the nurse to change his sheets. Atta boy. I am telling you, this boy knows how to eat and poop with the best of them. :)
OK, bed time for me. I have an early morning conference call with India, a light day at work and then it is time to relax again and start my New Years vacation (I took Thursday off).
11:45am: Reid had one of the worst nights he has had in awhile... Yesterday afternoon, he started going downhill a little and continued through the night. His CO2 gasses were creeping from the upper 60s all the way into the 90s last night. They have adjusted the vent settings: changed the breaths per minute from 25 to 60 bpm; adjusted his O2 from the 50-60 range to 70%; and have switched from the vent giving volume (15 cc) to giving a particular pressure (not sure what the pressure is set at though). From what I understand, the vent will provide enough air/oxygen per breath to create a certain pressure in the lungs, rather than giving a set amount of volume every time. I assume this is to help blow off the CO2 from his lungs. They had switched from pressure to volume about 2 or 3 days ago... close to the same time that they had removed the Nitric Oxide. And speaking of the NO, since that was removed, they are going to probably increase the dose of Sildenafil today to help compensate (they both do the same job with the dilation of the vessels in the lungs). An ECHO this morning showed that there was still some slight hypertension and I am assuming this is from the removal of the NO as well. When asking the nurse as to why this all happened.... "it is just part of Chronic Lung Disease. He will have good days and he will have bad days". Anyway... because of the excess of CO2, Reid's body is working harder to remove it even though the vent is trying to do the same thing. Because of this, they have resumed the morphine drip and giving a supplemental bolus (the administration of a drug, medication or other substance in the form of a single, large dose) every 4 hours. Every 6 hours, he continues to receive the Ativan. Big babies just don't like being messed with.
Well, Kristen's folks just left for their drive back to Houston... so I guess it is time for us to get ready to head to the hospital. I didn't visit Reid yesterday and I am now anxious to see him. Maybe the step backwards was in retaliation to me not visiting him? A little temper tantrum of sorts?
Monday, December 28, 2009
6:00pm: I have gone almost an entire day without blogging, so I guess that means it is time to put my fingers to the keyboard. Kristen and her mom went to the hospital today... I was going to trail closely behind them, but decided to hang back and run a few errands that I have been wanting to do. Not a whole lot of progress today, in fact, they had to go up on the breaths per minute to 30 due to a bad CO2 gas. They suctioned him out and they were going to do a subsequent gas test in a few hours to see if that would make a change.
Kristen met with the doctor today to figure out what the game plan was. They have increased his feedings to 5cc every hour and are going to work up to full feeds over the next few days. They are curious to see if this max feeds will cause his hernias to show up again. If they do, he will take action and probably do surgery.
However, if they don't, he is going to wean Reid from the vent and get him back to Cobb hospital. He really doesn't want to do the surgery until Reid is a little larger and a little more stable. Dr. Moore thought that he could probably wean Reid from the vent faster than what he is doing right now, but he is very focused on doing things the right way and taking some time doing it.
They took a subsequent culture today to test for the three bacterias and if they don't yield anything in 24 hours, Reid will come off the antibiotics tomorrow. They have further weaned the morphine and hope to have him off it within the next day or so. Nurses don't think that he is in pain anymore and will give the Ativan every 6 hours to help with his agitation. As soon as the morphine is done, that will free up the need for one of the peripheral IVs (the one in his left ankle looks like it is about go bad soon anyway).
Reid was weighed again last night... 7.98 lbs. So... we essentially have an 8 pound baby on our hands. In two weeks, he gained about 1.25 pounds.
Erica and David left this morning and Kristen's folks will leave tomorrow. I will start work again tomorrow, so the holidays are essentially over and we are back to the grind again. Kristen starts work next Thursday and will be her first time at work in about 6 months - will probably be a hard adjustment for her. The one positive thing about her going back to work, besides an additional paycheck, is that she only works on Tuesdays and Thursdays. Her daily visits to the hospital shouldn't be too impacted.
Anyway, I need to get back to watching a sloppy UGA bowl game, so I will wrap it up here. Oh, and the picture that I posted on today's blog is of Reid sucking on a vanilla flavored pacifier. As if he didn't have enough in his mouth and nose already...
Kristen met with the doctor today to figure out what the game plan was. They have increased his feedings to 5cc every hour and are going to work up to full feeds over the next few days. They are curious to see if this max feeds will cause his hernias to show up again. If they do, he will take action and probably do surgery.
However, if they don't, he is going to wean Reid from the vent and get him back to Cobb hospital. He really doesn't want to do the surgery until Reid is a little larger and a little more stable. Dr. Moore thought that he could probably wean Reid from the vent faster than what he is doing right now, but he is very focused on doing things the right way and taking some time doing it.They took a subsequent culture today to test for the three bacterias and if they don't yield anything in 24 hours, Reid will come off the antibiotics tomorrow. They have further weaned the morphine and hope to have him off it within the next day or so. Nurses don't think that he is in pain anymore and will give the Ativan every 6 hours to help with his agitation. As soon as the morphine is done, that will free up the need for one of the peripheral IVs (the one in his left ankle looks like it is about go bad soon anyway).
Reid was weighed again last night... 7.98 lbs. So... we essentially have an 8 pound baby on our hands. In two weeks, he gained about 1.25 pounds.
Erica and David left this morning and Kristen's folks will leave tomorrow. I will start work again tomorrow, so the holidays are essentially over and we are back to the grind again. Kristen starts work next Thursday and will be her first time at work in about 6 months - will probably be a hard adjustment for her. The one positive thing about her going back to work, besides an additional paycheck, is that she only works on Tuesdays and Thursdays. Her daily visits to the hospital shouldn't be too impacted.
Anyway, I need to get back to watching a sloppy UGA bowl game, so I will wrap it up here. Oh, and the picture that I posted on today's blog is of Reid sucking on a vanilla flavored pacifier. As if he didn't have enough in his mouth and nose already...
Sunday, December 27, 2009
9:00pm: Reid continued to have a fairly agitated day but did make some progress on the vent. They have retracted his breaths per minute down to 25, his O2 to 50, his volume to 15 and his PEEP (pressure) to 6. They are really trying to wean him off the morphine as his pain should have subsided by now, but they are having a little difficulty with it. Since Reid isn't as "snowed" as he used to be, they are giving Ativan to take some of the edge off. He barely slept last night and much of the morning... it is as if he doesn't want to miss anyone talking or coming to visit. The nurse mentioned today that even if she tip-toed into the room, Reid would open his eyes and look in the direction of her walking in the room. The Ativan lets him relax and calm down and allows him to fall asleep.
Dr. Moore is back in tomorrow and we are anxious to see what the game plan is. His hernias have not been an issue over the past 4 or 5 days, so I don't think there is any pressing need for him to have surgery. They want to make sure that his respiratory issues can stabilize before moving forward, but I am going to be adamant that I am not leaving Egleston until they have done the surgery. I do not want him to be transported back to Cobb only to start having hernia issues all over again and then need to be transported back. In addition, the sooner that he can have the surgery, the sooner he can come off the ventilator... I don't want to be in a holding pattern with him on the vent just waiting for the time when the hernias become difficult to reduce.
10:30am: I was just reading through the blog this morning and I realized that I never posted yesterday that they were able to successfully get Reid off of the Nitric Oxide. They pulled it at 10:30am yesterday and with a little bump in O2 support, he was able to handle it.
9:45am: Reid had a very grumpy night last night and didn't sleep all that much. I think that with the low amounts of morphine and the fact that his body is getting used to it, he is becoming very irritable as he knows what is going on. When I called in this morning, his oxygen was at 50% and they were talking about starting some small feeds to get his gut working again. I think he is a hungry little man.
Dr. Moore is back in tomorrow and we are anxious to see what the game plan is. His hernias have not been an issue over the past 4 or 5 days, so I don't think there is any pressing need for him to have surgery. They want to make sure that his respiratory issues can stabilize before moving forward, but I am going to be adamant that I am not leaving Egleston until they have done the surgery. I do not want him to be transported back to Cobb only to start having hernia issues all over again and then need to be transported back. In addition, the sooner that he can have the surgery, the sooner he can come off the ventilator... I don't want to be in a holding pattern with him on the vent just waiting for the time when the hernias become difficult to reduce.
10:30am: I was just reading through the blog this morning and I realized that I never posted yesterday that they were able to successfully get Reid off of the Nitric Oxide. They pulled it at 10:30am yesterday and with a little bump in O2 support, he was able to handle it.
9:45am: Reid had a very grumpy night last night and didn't sleep all that much. I think that with the low amounts of morphine and the fact that his body is getting used to it, he is becoming very irritable as he knows what is going on. When I called in this morning, his oxygen was at 50% and they were talking about starting some small feeds to get his gut working again. I think he is a hungry little man.
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