Two Tidbits

There wasn't much change at all in Andrew's status today, so I thought I'd focus on two things I forgot to mention yesterday.

1. The bandages on Andrew's stomach are gone. The surgeon came by and took them off yesterday, and his scar looks great. If possible, it looks even better than it did last time, and this includes two incisions in the same spot.
2. Andrew is off contact isolation. I don't remember if I ever mentioned the reason that we have to wear gloves and gowns in his room; essentially, he had a positive test for a bacteria called 'steno,' which is a pretty contagious airborne bug that can affect those with compromised immune systems. Even though it didn't seem to be affecting Andrew himself, the fact that he was colonized (tested positive every time) meant that it was living on the plastic of the ventilator tube and could still be dangerous for other babies in the unit. In order to protect them, any time we were in contact with Andrew or his stuff, we had to wear gowns and gloves. Well, as of a negative test yesterday, we no longer have to wear a bunch of plastic....at least until the next time they take a sample and do another test. :)

Okay, that's it for tonight. There were no changes, aside from some weaning on the hi-fi ventilator. He's approaching minimal settings, but it'll probably be a couple of days before they switch him back to a conventional ventilator.

I've got a busy week with work, but I'll try to get some new pictures up in between trips.

Another Field Trip

Andrew took a field trip to Radiology for a CT scan today. They unhooked him from the ventilator, gave him breaths by 'bagging him' during transport, and then hooked him up to a conventional ventilator in the radiology room. He behaved well throughout, and there were no respiratory issues. The interventional radiologist was also able to attend, so they were prepared to drain any abscess that was found.

On his previous x-ray and ultrasound, it appeared that there was air and perhaps some fluid in his lower chest cavity, just below his left lung. When they were able to visualize the same area with the CT scan, they realized it was below the Gore-Tex patch, in his abdomen, rather than above. They inserted a needle and drew out the liquid. Instead of finding pus (which would be in an abscess), they found old blood. This was quite possibly left over from the surgery and probably harmless; they took cultures of the blood to make sure.

The rest of the CT was uneventful. They continued the scan, but won't review the details for a couple of days. There weren't any obvious issues, so it finished and they wheeled him back to his room. Not finding anything serious was a good outcome, so the scan is certainly a success for now.

However, Andrew had another post-scan issue. A few hours later, he had some more blood in his diaper. Since then, he's had a couple more. Though this would normally be very worrying and point to a perforated bowel, they can pretty much rule that out from the scan. That again points to colitis, a simple internal inflammation of his colon. Unfortunately, there's not much that can be done for it, aside from what they're already doing. He's still on antibiotics, they've taken cultures of everything to look for anything unusual, and so far he's doing well on the ventilator.

So, the day was essentially a wash. The situation they were worried about appears to be nothing, but there's still an unexplained problem to keep an eye on. His test results recently have been better, pointing to a lessening of infection. His gases have also been good enough to wean the vent settings a few times. Since there are no obvious action items, they'll continue with the current plan.....they'll wean the hi-fi, switch him to a conventional vent, wean those settings, and then try to extubate. He's obviously a long way from that point, but it's still a good long-term goal.

I'll post again if we get additional CT results....if not, the next few days should be pretty boring. As long as his dosages are correct, he just lays there sleeping all day. It'll probably be a few days (at least) before they allow him to wake up again; they want to make sure his other issues are under control first.

Quiet Sunday

Not much new to report today. Andrew had a pretty good day, in that each blood gas seemed to be better than the last. This evening has produced a couple of less-good results, but they haven't had to go back up on the ventilator settings.

The plan is to take him to Radiology tomorrow in the late morning or early afternoon. He'll get a CT scan that covers from his neck to his groin, so they'll focus on the possible abscess but also get a look at his belly and (hopefully) his constricted bronchus. If one of the interventional radiologists is available, he may be able to perform any necessary procedures while still in the scanner; for instance, he could drain an abscess.

The range of possible findings is wide, so we won't know much more until it's over; last time, we didn't get the results for two days, so it might be a while.

An Explanation?

We just got a call from the doctor, and they may have something on which to focus their energies. His most recent chest x-ray showed some air in an area where there had previously been no lung tissue. This points to a possible abscess in the chest cavity, which would provide both a location for infection and a reason for its effects on his respiratory system. Tomorrow they will take him for a CT scan to get a better look at the area; while they're there, they'll also take a closer look at his abdomen. The reason they're waiting until tomorrow is so that they can wean the ventilator settings and get him more stable for transport. If the abscess is confirmed, they will try to drain it...I'm not sure if that would happen in radiology, or if they would wait until the CT was complete.

Though this certainly isn't a good problem to have, we are happy that they have a possible source for Andrew's continuing issues; we prefer to know what we're facing, rather than dealing with continued mystery. However, we also have to keep in mind that they've suspected an abscess in the same spot before, and further tests revealed nothing of concern. I think this time the suspicion is likely more accurate...we'll see what the tests show tomorrow.

Andrew's most recent blood gases have been better, and he seems to be more comfortable on the sedative drip. He's already starting to wriggle a bit, which might require refinement of his dosage. He's always had a high tolerance for narcotics....let's hope he never develops a post-NICU drug habit. He's had a good day so far, and we hope it continues until we can deal with the abscess and any other outstanding issues.

Rewind

I wish I could report some improvement, but I can't. Instead, Andrew is back on the high frequency ventilator, which is a significant step back. He had an okay morning, but in the afternoon he spiked another fever and had an elevated pulse, blood pressure, and CO2. Even with additional sedatives, there didn't seem to be any abatement. After two bad blood gases (high CO2, but more importantly, low pH), they decided to try the hi-fi. They also put him on a constant sedative drip, which we have been expecting ever since they started him on the paralytic. Without appropriate sedation, he could be awake and distressed, but not able to show it through the paralysis; having the drip makes sure he's comfortable at all times.

Generally, Andrew responds pretty well to the hi-fi, and his CO2 quickly drops. This time, however, he wasn't as quick to improve. He had another bad gas, and they turned up the settings. After a breathing treatment, an airway suction, and a while on the new settings, he had much better results. Since we left, his heart rate and blood pressure have been relatively calm, likely due to the increased sedation. His gases have been up and down....not as high as they were today, but higher than they should be.

All the signs of infection are present, though it's still hard to pinpoint the source. His urine, blood, and airway seem to be clean, which rules out quite a bit. The thought is still that his digestive tract is the issue, but multiple x-rays haven't shown any perforation of his bowels. It's obviously affecting his respiratory status, but there's no known pneumonia or other specific lung ailment. At the moment, we're in wait-and-see mode....nothing seems to have gotten obviously worse, but it certainly hasn't gotten better, either.

A lot will depend on which direction the infection decides to go. If his fever (which is gone for the moment) comes back, it could cause further problems. If the infection subsides, we can turn off the sedation and return the focus to ventilator weaning again. The last few days have been incredibly emotional and stressful, and it may not get better any time soon. Though we hope for the best, we would not be surprised by a call from the NICU that says he's taken a turn for the worse.

Needless to say, we'll be checking in with the nurse quite often....at the last few checks, he has been nice and stable. Unfortunately, I can't update the blog after every call, so rest assured that everything is relatively calm unless I post otherwise.

Pause

Andrew had another really rough day today. He had continued signs of infection in his blood tests and continued respiratory distress. High CO2, low oxygen saturation, and low lung volumes accompanied by high heart rate, high blood pressure, and general discomfort. All the problems seemed tied to him "clamping down," whether voluntarily or involuntarily. Though neither is really his fault, the respiratory issues are all tied to other larger issues.

They still don't know exactly what the problem is, but it likely involves his digestive tract. With the blood in his diaper yesterday, the possibilities include colitis (colon inflammation) or something similar. So far there haven't been any similar signs today, so it's possible the inflammation has subsided a bit. There are also several worse possibilities, but none of the tests (blood cultures, belly x-rays) have so far pointed to these options. That being said, the only thing we really know is that we're not sure exactly what's going on.

We do know that whatever is going on, it's having a detrimental effect on his lung situation. He's fragile, and a problem in one system can cause other, seemingly unrelated, problems. Today, those problems required several doses of sedatives and paralytics, extra oxygen, and a higher rate on the ventilator. In the end, after several 'episodes,' they decided to be proactive rather than reactive. Instead of waiting for Andrew to cause a problem and then trying to catch up with drugs, they've decided to put him on 'pause' until his body has time to recover on its own.

So, he's currently on a constant drip of narcotics and paralytics. This requires that the ventilator be turned up to full support (30 breaths per minute), but it also means that his body doesn't have to focus on breathing. It's free to fight off the infection, heal completely from the surgery, and start back up his normal digestive processes. He's back on antibiotics and temporarily off all feeds. His numbers (oxygen/CO2) all look pretty good, though that's to be expected at such high vent settings.

We don't expect this to turn into another month-long ordeal like the last time he was fully sedated. Hopefully the antibiotics will take effect and his infection will clear up in a couple of days. Then they'll let him come out of it and wean back down on his settings.

Needless to say this wasn't the best way to end an already exhausting week. The vibe in Andrew's room has been somewhere between somber and grim; the doctors have also spent far too much time in there recently. It's been scary, and he's not out of the woods yet. Until they either identify the problem and fix it, or until his body has a chance to heal, there's always the chance of worsening issues. Andrew (and we) definitely need some rest....hopefully it will be a relaxing, positive weekend.

Ending a Long Week

Andrew decided to give everyone a scare today. Around 4pm, he was sleeping comfortably and behaving himself. Apparently he then did his little "eyes snap open and he's wide awake" thing. That part is normal behavior, but then he immediately dropped his heart rate and stopped breathing. Obviously a low heartbeat isn't normally his problem, so it was quite surprising, as was the speed with which it happened. Unhooking the ventilator and "bagging" him brought his saturation up pretty quickly, but then he went back to his normal antics. He had a high heart rate, high blood pressure, very low lung volumes, and seemed to be generally distressed. Blood cultures were taken and initial test results showed an elevated white blood count and other signs of infection, so they started up some discontinued antibiotics. It eventually took a couple of hours and a lot of medication to get him under control. Meanwhile, I was 1000 miles away in Seattle.

By the time the nightly shift change was over, everything seemed to be back to normal.....at least until I got there. The one thing that was still working well was his feeding. He was already up to 28 cc per hour, scheduled to go to 30cc (full feeds) at 4am. When I got there, he finally looked comfortable and was sleeping peacefully. He woke up and was looking at me, then let us know that he needed a diaper change. We found some blood in his diaper, which then led to a belly X-ray. Though there was no sign of anything obviously wrong on the X-ray, but they're stopping his feeds for the night and canceling his overnight sprints. They'll get a follow-up in the morning.

Though this was probably just a reaction to continued infection and some respiratory distress, it was a scary reminder of just how fragile Andrew is. He's stable now so there's no immediate worry....try to have a happy Friday.

A Long Week for All of Us

The last couple of days have been a study in contrasts....Andrew has had some really good moments and some not great ones. The most recent problem has been recurring tightness in his lungs. It's hard to tell whether he's getting upset and clamping down, or whether his lungs are clamping down and making him upset. It's probably due to bronchospasms, which are involuntary constrictions of the upper airway. When they happen, even normal breathing doesn't really move much air in and out of his lungs. Fortunately, they can be treated with bronchodilators, misted medications that I've collectively referred to as breathing treatments. He can go from agitated, desaturating, and spiking his CO2 to relaxed, stable, and asleep within 20 minutes after a breathing treatment. He gets routine breathing treatments a few times per day, but he's needed a few extra doses recently.

Fortunately, there are also lots of positives. He's down to minimal ventilator settings and only getting ten breaths per minute....he does fine with it unless he's either agitated or constricted. They've started sprinting him four times per day, for one hour each time. So far he's done well on some sprints and had to stop in the middle of others. On the aborted sprints, his constriction and agitation went away with additional breathing treatments. They've started scheduling his sprints to fall just after his scheduled treatments, and I think that will be a big help.

His feeding rate has also been significantly accelerated. They're now increasing by 3cc every 8 hours, and he's currently getting 19cc per hour. With "full feeds" at 30 per hour, he should get there within a day and a half. Hopefully his body will adjust quickly to getting so much nutrition through his digestive system and he'll be able to take advantage of the additional nutrients, antibodies, and enzymes that just can't be duplicated by a bag of yellow liquid dripping into an IV.

When we visited today, he spent a long time awake and attentive, looking at both of us pretty intently. He also kept sticking his tongue out at us, which was very cute. It made him look like he was smiling, which we haven't seen him do in months. I'm still not sure whether he was smiling at us or taunting us....I'm hoping for smiling.

Hands

Here's a quick video of Andrew's active hands. It was taken a while ago, during his feverish (and swollen) phase, but I liked the close-up. There's music to accompany the video, so make sure your speakers aren't turned up too loud.

Andrew Deets

When I arrived at the hospital, Andrew was not having a happy time. He was restless, he kept dropping his oxygen saturation, and his CO2 sensor was reading quite high (in the 90s and low 100s). He seemed to be clamping down and not breathing as he is supposed to, and his lung volumes were pretty low.

The respiratory therapist came in and gave Andrew an extra breathing treatment, which involves putting a mist of a bronchodilator (to expand his airways) in-line with his ventilator tubing. When the treatment ended a few minutes later, he was noticeably more comfortable. His volumes were better, his CO2 sensor dropped back down to normal levels, and he stopped desaturating. Most importantly, he seemed much less restless and started sleeping soundly.

I watched him for a while, satisfied myself that he was feeling much better, and headed home.

Pop Quiz

I'll give you one guess as to where I was today...here are some hints:

1) This morning the radio weatherperson said, "There's going to be a little sunshine this afternoon, and that'll be about it for the rest of the week."

2) I saw a billboard for a financial institution that suggested I "Save for a sunny day."

Yes, that's right, I spent the day in beautiful Washington state, where even the largest mountains (Mt. Rainier) can be completely obscured by clouds and visibility hovers around 200 feet.

I kid, but it wasn't too cold and the scenery was very pretty. I even got to enjoy the predicted afternoon sun, which allowed me to see the mountain in the distance.

I'll be headed to the hospital from the airport when I land (I'm currently on the tarmac at Seattle Airport), so I'll post a little more about Andrew tonight. From what I've heard, he's having a pretty good day and can't wait to see his daddy. Okay, maybe I made that last part up.

A Message from the NICU

Andrew was a little antsy today, which they eventually determined was due to a renewed fever. His temperature got pretty high for a while, but it was brought under control with some Tylenol and Motrin. After that, he was much happier. Not much else to report....ventilator weans and feed increases are continuing as expected.

To make up for the lack of info, here's a quick message from Andrew....you may have to turn your speakers up to hear him:

Sunday, Sunday, Sunday

Andrew had a pretty good day today. By this morning he was down to 12 breaths per minute from the ventilator (from 28 in two days). That seemed to be a little tiring for him, so they moved him back up to 16. Aside from the one setback, the weaning is still moving forward. By the time we left the hospital today, he was back down to 14.

He's also starting to get food again. They started with 5cc over three hours, just to prime his stomach again....then they switched to 3cc per hour on a continuous drip. They'll increase it by 1cc every 12 hours (he's already at 4). Hopefully last week's surgery will allow him to get up to "full feeds" rather quickly, without any worry about him spitting up. Though no surgery is an entirely positive process, at least I can say that my baby will never throw up on me....at least not more than he can hold in his mouth.

It's going to be a busy week, including business trips to Seattle and San Francisco. I'll be heading to the hospital directly from the airport on at least two days, and the other days are jam-packed full of additional work. I'll try to keep the information flowing, but this week's entries may be more quick updates than long informational posts.

UPDATE: We just heard from the nurse that they've weighed him for the first time since the third of October. He's now 6.52 kilograms, which roughly equates to 14 pounds, 6 ounces.

Post-Op Pics

These are more recent pictures, from after his surgery. The surgeon was able to use the same incision down his midline, so the bandages should look familiar.

One of the respiratory therapists got cute with his "mustache."

Fever Pictures

These pictures are from a while ago, but they could also serve as Andrew's Halloween pics. Let's just say that he went as a mummy.

Daylight Saving Time

Another good day for Andrew. With more aggressive weaning parameters, he's gone from 28 breaths a minute to 18 in a single day. No fever, no major problems. He was very cute and seemed to be happy while we were there today.

Unfortunately, he's also starting to lose his hair. We think it's because of the steroids....they gave him a "booster shot" before his surgery....but it's still a bit disconcerting. He essentially scraped off his left sideburn by rubbing his hand against his head, and he's got some big bare patches on the top of his head from the blankets. I'm hoping he'll rub the extra hair off his forehead while he's at it.

Saturday Morning Quickie

The fever was minor and short-lived....a little bit of Tylenol made it go away for the rest of the night. He's had a good day so far, and has been weaned even more on the ventilator...good test results all night long.

Hot for Normalcy

Andrew seems to be back to normal today. Of course, normal means a high heart rate and a bit of a fever....fortunately, it also means that he was awake and alert. I didn't get to see him until after shift change today (8pm) due to a long work day at the end of a long work week. After he was asleep the entire time I was there yesterday, it was great to see him looking at me and happy....I missed him.

He still has to deal with the infection, but I feel like he's back to his usual self and won't have much of a problem. He's on the appropriate antibiotics and is past the sedatives he was on during surgery recovery. They're starting to wean his ventilator settings again, and have placed the "wean parameters" at a reasonable level; during the past two days, it would have been almost impossible for him to reach the test results necessary to turn down the breathing rate.

I feel like I'm not writing quite as coherently as I normally do, so I'm going to do myself a favor and go to bed. It has been an incredibly long week, and I look forward to sleeping in tomorrow. I hope you all have a wonderful weekend.

Eerily Calm

Yesterday, the goal was to keep Andrew calm and relaxed. Today, he was almost too calm and relaxed. He was a bit lethargic this morning, with a very slow heart rate (normally it's too fast) and not much interest in squirming, even when he was awake. They gave him an extensive bath to wake him up and get him moving, but he didn't become much more active.

When they rolled him from one side to the other, they noticed that his tummy was red on the side that had been down....when the redness didn't disappear after a little while, they realized that it wasn't just from laying there and suspected an infection. They took blood cultures and noticed that his "band counts," which also point to blood issues, had doubled during the day...it's very clear that he has an infection.

They put him back on his antibiotics, then switched to another new antibiotic when there was no immediate improvement. They started his feedings earlier today, but have since halted them until the infection clears. It's important to get this under control before he moves forward...fortunately, everything else seems to be relatively calm while he's recovering. He was asleep the entire time I was there, and his breathing (on the vent) has been pretty stable and normal. His temperature is actually lower than normal, which can also be a sign of infection, but it's less (psychologically) scary than running a fever.

We're playing a game of sit-and-wait for now, and we have to hope that the antibiotics will be successful. Until then, he's comfortable and not in any pain. More updates as he fights this infection over the next few days....

Keeping Comfortable

The day after surgery is always a bit complicated, and today was no exception. While I was there, he was awake and comfortable, though still a little squirmy. At other times, he was a little more fussy. They're trying to keep him pain-free, which sometimes requires some additional medication. His belly is still swollen from the surgery and he's still in the warmer-bed they used to bring him back from the Operating Room. He looks like a giant, and can touch both sides of the bed at the same time.....he's probably looking forward to getting back into his big-boy crib.

It's still a little early to talk about the next steps; we'll be focused on recovery for at least a few days. For now he's doing as well as can be expected after such a difficult surgery....more news as he becomes more awake and active.