4:00pm: Reid is finally off the nurcuron as of about 11am today. It will take a little bit of time to get out of his system, but he is slowly starting to wake up. His oxygen has been fluctuating between 21% and 40% today, but we knew this was going to be this way once he starts breathing on his own again. The PEEP pressures have been lowered to 8 (needs to get to about 6 before extubation) and things seem to be looking good. The dexamethasone dose has been cut in half.

He had some visitors today: Grandma & Grandpa Elley and Mrs. Alison. The nurse even dressed him for the occasion --- heaven forbid he isn't dressed for company. :)

I still haven't been able to see him since Monday. I think I am finally over my cold, but I wanted to give it one more day before I go in there. There is no use risking getting him sick for my own benefit, so I just have to hear the stories from everyone else

6:45am: God has been good to us again and has allowed Reid to be on room air (21%) for the past two and a half hours. The nurse said he is like a new baby today as he has tolerated her touching him. While his heart rate still goes up (a sign of agitation), his oxygen requirements remain the same. His blood gasses are back to normal again and they have further weaned the pressure (PIP) down to 21 (24 yesterday). It is pitch black outside, still very tired from working 14 hours yesterday, and Kristen is dancing around and singing. Life is good -- for the moment anyway.

5:00pm: Reid is still holding fairly steady. He has marginally increased on is O2 to 30%. At one point, he went up a little higher, but it was because he was swimming in his own pee. He does not tolerate a wet diaper and as soon as they changed his diaper and his bedding (leaked out of his diaper), he came right back down. His urine output was 130cc for one diaper and 160cc for another diaper. That is a TON of urine.

He just had a blood gas test and his CO2 was at 39, which is awesome, but for some reason his base was at -8. They like to be -3 to +3, and will tolerate up to -5, so he is a little off. The doctor is scratching his head and wanted to think about it because it was strange. His pH was a little low too, at 7.29 (normal is 7.35 to 7.45).

Lastly, I am going to leave you with a picture of his vent and his "loops". The loops, defined by their height and length, paint a picture of the size of breath that he is actually taking. In weeks past, the loops were about a quarter of the size, even with all of the pressures the vent was expelling. From this picture, I would think that his lungs have a lot less inflammation and are probably a lot more "pliable". "Good loops" as a respiratory therapist might say.

1:00pm: We have some really exciting news to share (and hopefully the trend can continue)!!! Reid had his eye test and there apparently wasn't any change from the past few exams. Looks like he has crossed the age/maturity threshold for ROP and the doctors determined that he will need no further exams. One of the eye nurses mentioned that she would like to do one more exam, but the doctor is fairly confident that this chapter is behind us. So, we will see if he has another one or not (I am guessing not). Long story short: no laser surgery needed!!

The other great news... which is even better news than the eyes.... Reid's O2 is down to 26%. And I would have to look back at my notes, but I don't think that he has been that low since the first couple of days of his life. The next step now is to start weaning on the vent pressures, which they have already started. His Pinsp (PIP) is down to 24. His PEEP is still at 10 and the doctor had told us a week or two ago, that it would need to get down into the 6 or 7 range before he could be switched over to CPAP. Of course, the next hurdle is to wake him up and get him off the nurcuron and morphine (this is probably a huge battle in itself). But, we are taking this one step at a time, and we are going to embrace this HUGE leap that our little rock star did over the past few days. We are so proud of him (but we wont tell him that we are in the event that he has some other things up his sleeve...err... diaper... that he wants to pull out).

9:30am: Reid had a good night last night and his O2 is down to 43%. Doctors have not done their rounds yet, so we are not sure what is in store for him today. I would assume that they may start weaning on the pressures of the vent. He eyes are currently dilated for his eye exam, so that should probably take place in the next hour or two. Curious to see how he is going to react to the exam as this boy does not like being bothered with. Just hoping that with all of the progress we have made in the past 2 days that this eye exam doesn't set him back again. Every day brings something new for him...

10:15pm: Reid seems to have maybe had a "traumatic" experience with the ET replacement this afternoon and required substantially more oxygen. Before the procedure, he was down to 53% and afterwards, he got all the way up to 82% (around 6:30 tonight). Since then, he has been steadily coming down and is currently at 65% and sat'ing 96. Talking to the nurse, there is an adjustment with a new tube: irritation (old one being taken out and new one inserted), a larger tube consuming more of his windpipe, etc. But she said this one should be much more comfortable in the long run for him and the room is much quieter without him squeaking every time the vent takes a breath. I would also assume there would be some sort of vibration with every breath, which is gone now too. So, we will see where tonight goes. Hopefully we can be back down into the low 50s again (and if we are super lucky, down into the 40s??).

4:15pm: Dr. Piazza just gave me a call to give me an update as to where Reid stands. I am loving the fact that he is much more available to Kristen and I after the nurse had put a kind word in for us. He is much more likely to stop by and see us when we are in the NICU, or to give me a call. Overall, he is pleased with the progress, but would have hoped to see maybe an additional 10% drop in O2 requirements. If Reid is to continue to progress, he would like to start weaning the dexamethasone starting sometime tomorrow… however, he will need to be in the 40-50% O2 range for him to start.

I was mistaken about the ECHO… he actually had an EKG done today. There were no issues, so that was good news. He said one of the common side effects of the drug is to increase the blood pressure, and when it is high, the heart doesn’t need to beat as fast. A heart rate of 80 for a baby Reid’s size is not uncommon, it was just the fact that Reid’s heart rate is usually in the 130-140 range; hence the slight alarm. No arrhythmia was found in the EKG.

The ET replacement went “smoothly” and had zero issues. Dr. Piazza was very hesitant of doing this, but knew that ultimately, when Reid comes down into the 30-40% O2 range and they start to wake him up (stop nurcuron), they wanted better control over the vent and be sure that no air was escaping around the smaller tube. The larger tube fills his windpipe and makes it much more easy for the vent to do its job correctly. He was glad that he did it, but was a little nervous about the whole procedure, but commented that Reid did well.

He did mention that his O2 was still at 67% but peaked into his room and said that his sat’s were high and could be turned down a little bit. So, let’s keep up the prayers and hope that Reid can get into the 40s tomorrow so that he can start the dexamethasone weaning process!


3:00pm: Reid's catheter was removed and his new ET tube was put in by Dr. Piazza. I think this stressed him out a little bit and his O2 is back up to 67. I don't think that getting a tube down your throat, regardless of how sedated you are, would feel good. We are hoping that he can settle down and get off the higher O2 soon. Nurse and Doctor were both pleased with the progress he has made today. ECHO hadn't taken place yet when Kristen called at 2:45.

11:00am: Just talked to the nurse and Reid seems to be continuing to have a good day. Currently, his O2 is down to 57 with a BPM of 27 (he was at 35 yesterday). His latest gas tests had a CO2 of 41. All very good news!

On the agenda for today:

* ECHO scheduled for today to take a look at his heart. Today, his nurse said that his rate hasn't dipped below 100... and they aren't sure if his heart's rhythm is disrupted or if it is just a general speeding up or slowing down. Hopefully the ECHO can show one way or another.

* His ET tube (breathing tube) is going to be replaced. The current one is too small and causes him to squeak when he breathes. Not really an issue now, but they don't want to get into a sticky situation where if his breathing condition worsens and they needed a larger tube. His current one was inserted on December 23 (day of his surgery) and he has already outgrown it.

* His catheter is going to be removed. They feel that his urine output is just fine and the catheter is only another source of infection.

Today has been a good day and I am praying that it will continue to last!

7:30am: It appears that the dexamethasone is doing its job. Between 10:45pm last night and 6:30am this morning, his O2 dropped from 97% to 65%. But with every bit of good news, we also have bad news to accompany it. It appears that the medicine is causing his heart to have arrhythmia. His heart rate will go way up, come back down to normal and then later go way down, only to go up again. His blood pressure is doing the same, but the good news is that he is able to maintain his oxygenation when this all happens. The doctors will be discussing this in rounds this morning and we will follow up to see what the course of action is... maybe supplementing it with another drug, discontinuing the dexamethasone, or nothing at all. They will have to determine if the risks of using the dexamethasone outweigh the risks of not using it at all. Not really sure if I am supposed to be concerned about this right now, but I am going to focus on the good news right now that his O2 is at 65.

I had a horrible night last night. I have been under the weather for the past couple of days, and last night, I tossed and turned, got hot and cold, sneezed, coughed and woke up around 5am with a pounding headache (probably one of the worst I have ever had). I cancelled my 8am call with my offshore India team, and going to go back to bed. I know what is on my plate for work today, so my bed rest will be short lived. Kristen is getting ready to go to work this morning; she had off on Monday for MLK day, so her one day of work this week must be really nice. If only she could support the Elley household on her teacher salary... I think I could manage being Mr. Mom for awhile. This work thing sucks and I am ready for retirement... or maybe at least a nice vacation from our daily lives. The past 7 months has been a wild ride.

10:15pm: down to 97% O2 and sat'ing 96. Nurse seemed a little concerned that we hadn't seen more progress, but we are counting on tonight and tomorrow to start seeing the downward trend. All babies respond differently...

12:45pm: Still at 100%. Doctor's rounded and didn't make any changes other than they increased his pressures on the vent.

I forgot to mentioned yesterday that they are now giving him arginine which is an amino acid that plays an important role in cell division. Some of the benefits include: Precursor for the synthesis of nitric oxide (NO); Reduces healing time of injuries; Quickens repair time of damaged tissue.

9:15am: Reid's O2 is back at 100% and has been there for most of the night. His hypertension doesn't appear to be the issue, his vital signs all look good (blood pressure, heart rate, etc)... which makes them believe that it is all related to his poor lungs. The doctors haven't rounded yet today, so we will see what they suggest... but the nurse feels that they will just wait to see the effects when the dexamethasone kicks in (~36 to 48 hrs).

3:30pm: After a discussion with the pulmonologists, the doctors have suggested that we move forward with the use of daxamethasone. They were originally going to wait until the antibiotics were finished, but took another culture and noticed a drastic drop of white blood cells (which are a sign of infection) from the last culture. This leads them to believe that the infection is either gone, or on its way out and the issues that Reid is facing is probably not due to this infection/bacteria.

With that being said, Dr. Patel had asked Kristen and I today if we were comfortable with the use of this drug (they need consent before they do). The plan would be for the dexamethasone to be administered twice daily for 3 to 7 days, followed by a three week treatment of prednisone.

I gave Dr. Metcalf at Cobb Hospital a call this afternoon and he was in favor of using the drug as Reid is getting too big to be dealing with the issues that he is. Dr. Metcalf's only concern was that a 3 day treatment of dexamethasone would probably not yield many results as it usually takes 48-72 hours to start seeing anything.

Reid will get his first dose today and then two a day until they feel that he has made enough progress (3 days initially, then evaluate. If needed, two additional days and then re-evaluate. If needed, two additional days for a max of 7 days). At that point, they will start the prednisone for the three weeks.

We are scared of the unknown, but studies have shown that low doses (less than 9 days) of this medicine are "safe". We feel the risks of not starting this drug outweigh the risks of taking it and we will deal with the consequences later in life if they ever present themselves.

12:30pm: Still at 80% O2, but found out that his hematocrit level was 29... time for a blood transfusion. This may partially explain some of the reason as to why it is taking some time for him to rebound from yesterday...

8:10am: Reid is down to 80% O2 as of 8:00am. When Kristen called at 4am, he was at 90%, so hopefully we can continue this downward trend today.

10:45pm: Still at 100% O2. Nurse said she was about to turn him down to 95% as he was sat'ing in the 95/96 range and then he fell down to about 91/92. We are crossing our fingers that we can make some progress tonight! Kristen is making our cat say his kitty prayers with us tonight.

6:45pm: Success is short-lived in the Elley household these days... the results of taking off the nurcuron finally caught up to Reid and he was back on 100% oxygen. About 30 minutes after my last post, his O2 started creeping up and eventually got up to 100% and they started the nurcuron drip once again. When Reid gets back down to the 40s/50s, they will attempt to remove the nurcuron again. If this doesn't work, looks like the dexamethasone might be our next path, but they are wanting to see the results of the antibiotic first (6 more days).

3:30pm: They took Reid off the paralytic at 9:30 this morning and have had to go up on the oxygen to 63, but I think for the most part, it has been a fairly quiet day. He wiggles around when we touch him, so it is nice to see some movement out of him. Still on the morphine drip and pretty drugged up, so we have yet to see him open his eyes.

They also weighed him this morning and he is 10 lbs 5oz - some of which is water weight and is still puffy. Nonetheless, he has put on quite a bit of weight in the past month since we have been here at Egleston. We are probably going to miss the joys of having a small baby, but the larger he is, the closer we are to bringing him home.

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!

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.

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!

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.

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.

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!

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.

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.

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...

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.

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!

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.

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.