Oct 31, 2007

Good Night

There's not much more to say after seeing him that I didn't say before. He's a little pale, but that will be dealt with by the transfusion. and he's completely stable otherwise. They have him well-sedated and will keep him that way until at least tomorrow morning....that will give him time to rest and relax before he wakes up and has to deal with any discomfort. It also means that there's very little change from hour to hour.

So, with a hearty Thank You to Andrew's surgeon, I'll be headed to bed.

Oct 30, 2007


We just talked to the surgeon, the procedure was successful, and Andrew is back in his room. We'll get to go see him after they get everything settled, but here's the gist:

The surgery, as expected, was difficult. The liver was "massive" and was fused to the spleen, which was fused to the stomach. All three were then fused to the Gore-Tex patch. He had to separate each of the organs (the hard part) then do the fundoplication (the easy part). He also replaced the G-J tube with a standard gastrostomy tube in his stomach.

Aside from the expected difficulty, there were also a couple of unexpected findings. His liver was much larger than normal due to the TPN (nutrients) that he's been receiving. Fortunately, his liver function seems to be normal and it will get smaller as his feedings replace the TPN. The other surprise was something called a Meckel's diverticulum, which is an extra appendix-like organ attached between the large and small intestine. It's yet-another digestive development abnormality (it occurs in 2 percent of children) and has the potential to cause a rupture in the digestive system. The surgeon removed it and sutured together the bowel where it was attached. More details on this later.

All of the blood gas tests taken during the surgery came back almost perfect, so he came through it (lung-wise) with flying colors. The nurse has warned us that he's a little pale, but he's getting a transfusion right now to make up for any blood lost during the procedure.

All in all, a big thumbs-up. I'll try to post one more time tonight with a final check-in after we see him, but everyone can breathe easy for now.

Getting There

The nurse just came out and told us it will be another half an hour. No details on how the surgery is going, and no guarantee on the time.

No News

No news yet, but we got a call (in the waiting room) at 1:10pm, saying they had just started. It's been around 3 hours, so there's plenty of waiting ahead.

These couches look comfortable, but they get old after several hours.

Late Start, Long Procedure

They got a late start on the procedure...they didn't even wheel him over to the Operating Room until noon, and they still had a lot to do (new vent, anesthesia, etc) before the surgery could even start.

Though this is normally a relatively simple procedure, Andrew's anatomy is going to make it quite difficult. The last time the surgeon had him open, his stomach was fused to both his liver and his spleen...the two most sensitive and bleed-prone organs in the abdomen. It will be very hard to separate the stomach to perform the fundoplication; it may not be possible at all without endangering Andrew's life. If so, they would abort the procedure and explore other options.

We have the utmost confidence in the surgeon, who has done a wonderful job on all of Andrew's other surgeries. Hopefully the three months since his last operation will have been sufficient time for his organs to heal and become less inflamed and more pliable.

The surgeon said he would be "ecstatic" if the procedure only took four hours, and we can't guarantee that it has even started yet. I'll blog when it's over, but don't expect anything for several hours at least.

Sleepy Time

I need to get to bed so I don't fall asleep in the waiting room during Andrew's surgery tomorrow. He had a great night last night and a good day today, so it looks like everything is in place for the surgery. D also got to hold him today, unexpectedly, which was a nice treat.

That's it for now. I'll try to post when the surgery is over, but it might be a long procedure....don't worry if it seems like it's taking too long.

Oct 29, 2007

Weekend Wrap-Up

It's been a long weekend. On Friday, D and I celebrated the tenth anniversary of the day we started dating....we went out to a nice Italian restaurant in downtown Encinitas. It was a nice evening, but we definitely hope that the next ten years are more like our first nine than the last one. It's been a rough year.

On Saturday and Sunday, all of Andrew's local grandparents came down to visit him one more time before the NICU closes to visitors for the winter. The visit was obviously bittersweet...any chance to see him is a good one, but the next six months will be difficult for all of us. We were glad to have everyone down, but now we're exhausted heading in to another busy week.

Andrew has been displaying some interesting behavior this weekend. During the day, he ran a fever, didn't sleep much, had some episodes that required extra oxygen/Ativan/Fentanyl, and was generally grumpy most of the time. At night, his fever disappeared, he didn't require much (if any) Motrin/Tylenol/Ativan, and slept peacefully....he even got a much-needed sponge bath. We're still trying to figure out if this is one of his quirks, or if there's a simple solution to perhaps a simple problem.

The surgery is still scheduled for Tuesday. If you count any time a surgeon cut him open to perform an internal procedure, this will be his fifth surgery:
  1. ECMO Cannulation: Putting him on ECMO required the surgeon to open the right side of his throat, sever a major artery and vein, and insert special tubes (cannulae) to provide oxygenated blood to his heart.
  2. Hernia Repair: For this surgery, his abdomen was opened, his intestines (and stomach, and part of his liver) were pulled from his chest cavity down into his abdominal cavity, and a Gore-Tex patch was sewn in place of his missing left diaphragm.
  3. ECMO Decannulation: Removing him from ECMO required another surgery (the same day as his hernia repair) to remove the cannulae, tie the artery and vein on both ends, and sew up his neck.
  4. Ladd's Procedure: After a blockage in his digestive tract prevented any food from being processed correctly, the surgeon opened his abdomen, removed the tissues (Ladd's bands) that were pinching his small intestine closed, and repositioned his abdominal organs in a less troublesome configuration. This includes small intestines on his right, large intestines on his left, and removal of his appendix. They also put in a gastrostomy tube (through his belly and into his stomach) while they had him open.
  5. Nissen Fundoplication: In Tuesday's procedure, they will dissect his stomach away from everything else (liver, abdomen wall, etc) then wrap (plicate) the upper stomach (fundus) around the esophagus, then attach it to itself. This will cause a corkscrew-shaped bend in his upper stomach, preventing food from refluxing back up his esophagus and (hopefully) allowing them to increase his feedings to their full levels.
Any questions? I used a lot of jargon in my summary, and I'd be happy to clarify anything that didn't make sense.

Oct 28, 2007

Headed for Tuesday

Andrew's nurse spent the day trying to keep up with his fever and anxiety. He got several doses of Motrin, Tylenol, and Ativan throughout the day, and also had wet blankets draped over him to help with the fever. The meds (and blankets) were successful, and he's having a much better night.

There were no major changes on his food or vent settings....they're continuing to rest him before the surgery on Tuesday, and don't plan on making any modifications to a working formula. Hopefully everything will be boring until then.

Oct 27, 2007

Does It Feel Like Winter?

Not much new to report today. Andrew wasn't at his happiest, but we think that was mostly due to an overzealous application of tape on his tube. The tape was covering his nostrils, making him a little anxious and uncomfortable. Aside from that, everything is relatively unchanged. They're not making any major modifications to his ventilator settings or his feedings, as they want to let him relax before his surgery on Tuesday.

The NICU closes to non-parental visitors on Monday, so we've got a full schedule of visiting planned for this weekend. After Monday, only parents will be allowed in until the end of cold-and-flu season, sometime in March or April. We thought they were going to shut down even earlier, a couple of weeks ago, but fortunately were given some extra time.

Posts might be sparse this weekend....I'll make up for it with some long-awaited videos next week. Hope everyone has a good weekend!

Oct 26, 2007

Moving Forward

Andrew's having a really good night so far. He's on high settings, but they didn't really see much reason to tax him unnecessarily, so it's okay that they're taking it slow. The current priority is getting his stomach surgery, which has now been scheduled for Tuesday morning. That should allow him to get up to full feed volumes without worrying about aspiration. Without that worry, they'll be able to focus on his ventilation and trying to get him back to minimal settings for extubation.

He's definitely on pretty high settings, but he seems very comfortable and has been getting good test results again. It's almost unfortunate that he's doing so well on extra support....we'd much rather have him doing this well on minimal support as he was last week....but there's a lot that's been stacked against him recently. The problem could stem from any or all of the following:
  • Infection. They've restarted his antibiotics, two of which had been discontinued, just to rule out the possibility of infection. His white blood cell count and blood protein count don't really point to an active infection, nor does his behavior, but it's best to be careful.
  • Micro-aspiration. Since he hasn't obviously spit up in the last week or so, they've slowly been increasing his feeds. They were up to 20cc per hour, which is more than double where he has been. This introduces the concern that he may be spitting up small amounts that never make it out his mouth, but are instead inhaled in tiny amounts. Since he's getting the stomach surgery on Tuesday that should prevent any future reflux, they decided to play it safe and take him back down to 8cc per hour. He's responded well to the change, but it's difficult to pin the improvement to anything specific.
  • Self-induced distress. Andrew is definitely much stronger than he was a few weeks ago. He's shown that by moving his arms and legs much more, but he's also been able to get upset in a more dramatic fashion. He's once again able to clamp down when upset, preventing good airflow and causing himself problems. Since he's been a little more uncomfortable recently (for various reasons), he's making things worse by getting upset about it. They've upped his Ativan and Methadone dosage to compensate for his increased size, and are being a bit freer with as-needed doses of stronger medications.
Whatever the reason, there's no reason to push him too hard right now, since he'll be well-sedated for the surgery on Tuesday. After that, they'll start to wean his settings back down.....if the problem was micro-aspiration, he should respond much better post-fundoplication.

I'm getting back to work today and tomorrow, and next week is already looking crowded for both of us. The fires are still threatening areas in northeastern and southeastern San Diego, but the western edges seem to be well under control. There will be challenges during the next windstorm, the first rain, and the rest of the fire season, but we were very lucky that the weather decided to cooperate.

Oct 25, 2007

Quick One

It still smells pretty smoky, but our house is okay for now....it would take a significant wind shift to threaten this area again. Famous last words......

Andrew has had a rough few days since Monday. He's gone up on his ventilator rate almost every day, had some grumpy "episodes," and his fever has gone up and down. He seems to be pretty comfortable, but every now and then he struggles with his breathing....it's a bit strange, because he's been doing fine on his sprints. We'll talk to the doctor about it soon and see if they have any other ideas.

Oct 24, 2007

Home Again

We're back in our house, as of this evening. The mandatory evacuation was lifted for our area, though it's still in effect just three quarters of a mile to the east. How long we're allowed to stay depends entirely on the winds. The Santa Ana (hot, strong, west-bound) winds disappeared unexpectedly early this morning, allowing our usual breeze from the ocean to push all the fires toward the east. The Santa Anas were expected to continue until Thursday, so they could flare up again at any time. We left most of our non-expensive stuff (pictures, documents) in the car, so we can probably be ready again in about fifteen minutes....let's hope we don't need to test that theory. D's school, along with every other school in San Diego, has been closed until next week, and my customer has closed their facilities until at least Thursday. We should have tomorrow to recover, unpack a bit more, and head to the hospital for a longer visit with Andrew.

Andrew's continuing to do well on higher ventilator settings, and there's no sign of the fever or extra-elevated heart rate. Hopefully they'll be able to slowly wean him back down on the ventilator, though I don't mind them giving him a few days to rest. In addition, they've continued to increase his feedings, and he's gotten to an incredible 18cc per hour. I can't say that I expect it to continue without any spitting up, but for now it's great that he's almost doubled his intake in the last week.

I hope everyone in the fire areas is safe (and housed), and that those of you in other areas are having a better week than the 500,000 San Diegans that have been displaced. More on Andrew when we get to spend more time with him, and perhaps talk to the doctors.

Oct 23, 2007

Fresh Air

The wind shifted during the night (unexpectedly) and has pushed the threatening finger of fire away from our house and northeast toward Escondido. The winds are still very unpredictable and will likely turn around once the day begins to heat up, but we're good at the moment.

We've been watching multiple channels, and some of the information is more updated than others. One channel is still saying, "Encinitas and Del Mar Heights are the next in jeopardy." Fortunately I think they're about eight hours behind the curve.

Oct 22, 2007

It's Coming Right For Us!

The fire seems to be heading in the wrong direction, so we're keeping a close eye on the news. At the moment it's threatening Rancho Santa Fe, but is expected to get into the nearby canyon. From there, it's a direct shot west through Olivenhein and Encinitas.

Our area seems to have plenty of defensible space, but lots of similar suburban areas have already been hit. It might be a roof-by-roof lottery. We're in the north-south dead center of the evacuation zone, and due west of the fire.

We are completely safe, as are Andrew, Willow, and Ember (our rabbit). They turned up Andrew's ventilator settings and he seems to have gotten a lot better. We'll figure out what that means and whether he'll be able to come back down in a few days...right now we're just happy that we don't have to worry about him for a while. It will help us relax a bit tonight.

More info tomorrow...hopefully we'll have good news.

Evacuation Sucks

We were evacuated from our house this afternoon, shortly after I returned home from the hospital. We packed up both our cars with stuff (pictures, valuables, etc) and headed down to Pacific Beach, where we're staying with Andrew's Auntie J (no relation). I don't anticipate the house being threatened, but everything is still pretty volatile.

Andrew's hospital is south of the major fire zones and should be completely safe. I got to visit for a few minutes earlier...he was unhappy, but seemed to calm down before I left. They sprinted him for two hours this afternoon, but then needed to give him some extra Ativan to relax afterward. He was sleeping comfortably the last time I checked in.

I'll update the blog when we know more about the house and/or evacuation, but I'm limited to my BlackBerry at the moment, so they may be short posts.

Fire Update

We're keeping a close eye on the fires in San Diego. D doesn't have to work today and my work has been canceled due to the fires, so we're watching TV and waiting. It's looking pretty gray outside, it smells like a big barbecue, and the evacuation line is about a mile south of our house. We certainly want to err on the side of caution, so I just filmed everything in our house (for insurance purposes). I need to run some milk down to Children's so that Andrew has food if we get cut off from the hospital, and D will stay here to pack stuff up if necessary.

Andrew's doing the same....he's still having some fever issues that are making him grumpy, but everything else is going pretty well. He's up to 15cc per hour on his feedings, so I want to make sure he has enough food to last a while.

UPDATE: The sun just disappeared from the sky....now that's some low visibility.

Oct 21, 2007

Hot in San Diego

The fires aren't the only thing that's warm in San Diego. Andrew's still dealing with his fever, and has been up and down all day. It hasn't gotten dangerous, but it's definitely making him uncomfortable. They've done blood tests that show his white blood cell count is normal, as is the level of a protein that indicates infection....they're investigating whether he might be teething, but the indications so far aren't pointing that way. Right now his temperature is normal, and they'll be giving him prophylactic Tylenol and Motrin throughout the night....they want to make sure he gets a good night's sleep.

Today his sprint lasted from 10am to 4pm....he seemed to be doing fine on it, so the doctor let it continue indefinitely. They only stopped because he was still getting upset from the fever. They're sticking to the two hour sprints tonight, which means he'll end up with a total of 10 hours for the day.

Saturday Night Live

Well, the fever is officially back, but they're treating it and it seems to be under control. He's still going strong on the sprints (he's now at 2 hours, 4 times a day) and his gases have been well within parameters.

He was pretty cute during our visit today....his facial features are starting to get back to normal. His cheeks are still swollen, but his eyes and nose look great.

There's not much else to report today...hope everyone's having a great weekend.

Oct 19, 2007

Longer Update

For those of you that haven't been bored by medical details in a while, here's a longer update for you......it might also cure insomnia if you read it late at night.

Ventilation: Andrew has continued to surprise the doctors with how quickly he got back to minimal ventilator settings and how well he's done on all of his blood gases in recent weeks. They've increased his sprinting time to an hour and a half each time, meaning he's breathing on his own for six hours per day. Though this isn't exactly the same as breathing off the vent, because he's being provided with pressurized breaths each time he tries to inhale, it does mean that the ventilator isn't triggering any of them....he's apparently gotten the hang of the mechanics. The next hurdle is getting the tube out of his throat. We have to hope that he doesn't need the "positive pressure" provided by the vent in order to keep his airways open. Natural breathing relies on "negative pressure," and could collapse his airway if it's not strong enough.

Food: It seems that we may have found Andrew's limits for food volumes, at least until we fix his reflux issues. In the last two weeks, every time his feeding volume has gotten around 10cc per hour, he's started to spit up. They want to minimize this process, as there is a danger of it getting into his lungs and causing problems. His feeds have seesawed up and down....going well until 10cc, then causing spit-ups, then being lowered to more manageable levels. In recent days, the nutritionists have evaluated him in order to make recommendations for possible low-tech solutions. I believe they'll probably end up fortifying his feeds with some solids, either rice powder or some cereal mixture. These will provide additional calories without increasing the volume significantly...that may enable them to feed less while retraining the same nutrition. They're also still trying to increase his volumes when possible....over the last two days, they've gone up 1cc every twelve hours. He's currently at 12cc per hour and hasn't spit up, but it may just be a matter of time. Even if he doesn't, it's a long way to "full" feeds (around 23cc), and he will definitely need the stomach valve surgery (Nissen fundoplication) in order to solve the problem long-term. They're talking to the surgeons now about scheduling, but it could be as soon as in the next two weeks.

PT: Andrew has so far responded well to physical and occupational therapy....he's also getting stronger on his own, and he moves a little more every time we show up. Yesterday he sat in his chair for a while and seemed to enjoy it. He was also moving his legs significantly for the first time in almost two months. He's wearing splints on his wrists to keep his hands in a healthy posture....they've started a "three hours, three hours off" schedule to give him a break. They're also doing regular exercises to build up his muscles and retain range of motion.

Meds: Andrew is still on quite a bit of medication, but he's also been able to wean on some of them. He's currently on four antibiotics/antifungals to deal with the infection he had last week....they seem to be doing the job. He's also still getting regular doses of Ativan and Methadone to keep him calm, relaxed, and pain-free. They are slowly lowering his steroid doses by 1 unit every three days, and he hasn't had any noticeable respiratory reaction to the decrease. He's on Lasix to help him rid himself of excess fluid, Viagra and inhaled nitric oxide to help with pulmonary hypertension, and I'm sure there are a few others I'm forgetting at the moment. That's all in addition to the nutrition he's getting, both by IV and by stomach tube. He's got a lot of tubes and IV drips, and I'm sure the doctors hoped to decrease them significantly by this point, but he's definitely a fighter and his recent progress has been almost all positive.

The Plan: The doctors still want to take it slow as far as pushing him toward extubation. He's been doing well, so they'll continue to increase sprint times. Last night he went an hour and 45 minutes, mostly because he was sleeping peacefully and they didn't want to disturb him. As they increase his sprinting times, his "accessory muscles" for breathing should be getting stronger. That said, even sprinting for 24 hours a day wouldn't be a guarantee of successful extubation....as I mentioned above, the difference between positive pressure and negative pressure is an anatomical distinction that can only be tested by removal of the artificial airway (breathing tube). The earliest they would want to try would be a week or two from now, and we will definitely make sure they are better prepared from a mechanical perspective. We want to make sure that if he fails, it's not because of a problem with the ventilator, the air circuit, the prongs in his nose, or the position he's in.....it's all about optimizing his chances for success.

In the next week or two, we'll figure out the schedule for extubation and the stomach surgery. We don't really want to extubate him if he'll have to be reintubated soon after for surgery, but we also don't want to put him through the process of additional surgeries if he's never going to survive off the ventilator. It may come down to a combination of surgery schedules and his progress over the next week. We'll certainly keep you updated as decisions are made.

Chair Time for Andrew, Pillow Time for Me

We had a meeting with the doctor today. The conference went fine and there's no surprising and/or exciting news. Everything's on track for now.

I've got more to discuss (nothing critical), but I've also got some important horizontal pillow time to catch up on....I'll try to provide some more details this weekend. For now, Andrew's having a good night, sprinting 1.5 hours, four times a day (six hours total), and generally behaving himself. He had some "chair time" with Physical Therapy today and handled it really well. He's weaning on ventilator settings and steroids, and doing great from a respiratory perspective. His fever and heart rate issue seem to be under control for now, and (on a personal note) his personality is still showing through his steroid-induced swollen face....I'll prove it with some video this weekend.

Oct 18, 2007

Our Little Buddha

I thought perhaps I could get away with a skimpy post if I added some pictures...so here they are. Andrew had a good day today, which included spending some time sitting up. He was propped up against his Boppy (U-shaped baby pillow thingy), which made his stomach stick out and his jowls sag.....he looked like our own little Buddha. With his comfortable slouch, he also resembled Al Bundy....all he needed was a big-screen TV, a beer, and a tiny remote. He was in this position for hours, and seemed to enjoy the change of scenery. Everything else is relatively stable, so I'll get right to the good stuff:

He had a much better vantage point from this angle, though he was looking toward a wall.

It also let us get to his level without bending all the way over.

I had another busy work day, but I still got to see him!

Here's another angle, to give some perspective on his position.
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Oct 16, 2007


I thought I'd try to post a little earlier than normal tonight, so I'm not tempted to skimp and hit the hay tonight. That said, there's not a whole lot of news. I had to work all day so I didn't get to spend a lot of time with Andrew tonight...fortunately, everything D had to report was positive. His fever seems to have subsided for now, and his heart rate is much better than it has been recently.

He got up to 10cc per hour (on his feedings) today which, as I predicted, was just enough to make him spit up again. They moved him back down to 8cc, which is where I had hoped they would leave him. They'll hold him there for a few days, then continue upward. He's also back on a normal schedule of sprints, four times per day for an hour. All his recent gas results have been good, and he's been behaving well aside from when he's feverish.

Not much else to report...I think we're going to have a meeting with the doctor on Thursday, so perhaps we'll talk about a schedule for the next steps.

More of the Same

Today was just as long as expected, so this is a short post.

Andrew continues to have a high heart rate and fever, but he also continues to respond well to the medication for it. A little bit of Motrin seems to work wonders, and I spent quite a while at the hospital with him content and comfortable. They gave him a day off sprinting so that he could relax while feverish, but started up again this afternoon with good results. He's doing well on the ventilator and has had almost all good gases.

That's it for now....droopy eyelids.....

Oct 15, 2007

Hot Lava

Today was a long day and tomorrow has the potential to be even longer (starting with a conference call at 7am), so I'm going to keep this short. Andrew had a rough day due to a continuing fever and high heart rate, both of which are likely from an ongoing infection. When we arrived at the hospital he was okay, but he slowly deteriorated throughout the day. His pulse and blood pressure were continually high, and spiked every few minutes as he got more upset. He would sleep for a minute or two, then wake up and start squirming and fussing. At a couple points this grumpiness also translated into decreased oxygen saturation and high CO2 levels. The nurse took away all of his blankets and extra padding, put a cool, wet blanket under him, and draped a wet washcloth over his forehead. He got a couple extra doses of painkillers (Ativan and morphine) as well as some Motrin for the fever.

After a few emotional hours, he finally started to respond to the treatment. He fell asleep holding my hand for at least 45 minutes (his longest period of rest all day) and his heart rate and blood pressure came down to reasonable levels. He's done fine so far this evening, though they decided to let him rest and skip the sprints for tonight. He seemed much more comfortable when we left, and apparently continues to be more relaxed and less upset.

Even though Andrew is currently on four different antibiotics and has been seen by the Infectious Disease group twice in the last four days, he still doesn't seem to have a handle on the infection. These issues have been on-and-off for a week and a half, and we hope he'll respond better and go back to normal very soon. They took a new set of cultures to see if they can identify a new, un-caught bug in order to further refine his medication, but it may just be a matter of keeping him calm and happy while his body fights off the infection.

That's it for now....I've already written far more than I had planned. He's okay tonight and hopefully will be able to move forward in a healthier manner.

Oct 14, 2007

Ask Drew: The NICU

The Files Family said...

I had a question for you about the NICU... a friend of ours just became one of Andrew's roommates (Baby C) and it made me wonder, how many babies are in the NICU? Is Andrew the biggest? And will he stay in the NICU until he goes home or is there a pedi room or something he will move to as he gets bigger.

The NICU is a 40-bed facility, which means there's supposed to be a maximum of 40 babies at any given time. This unit is the only one in the region that has ECMO machines, and would be the destination for any child that requires one in San Diego County, Imperial County, Hawaii, parts of Arizona, and even some Pacific island protectorates (or military bases). Because they are almost always full, they are a bit flexible, and can sometimes make room between beds for a portable setup. One of these spots is called Bed 20 3/4.

Before Andrew was born, we didn't know anything about the facility's capabilities, or even its existence. Now that we're more aware, it's amazing how often we hear references on the news or in normal conversation. Between our college friends, coworkers, and friends-of-friends, we've realized that at least four babies we know have been in this NICU for at least a visit. We've also met many new parents in the waiting room, most of whom have taken their babies home already. It's amazing how quickly kids can recover from some procedures....we've seen babies with their chests open who went home just a few weeks later (after a cardiac surgery, chest closure, and recovery time). Unfortunately lung development in CDH babies (and preemies, for that matter) usually takes a longer time....Andrew is one of the older patients, and almost certainly the largest. He was never a small baby, and he looks gargantuan next to some of the preemies.

The hospital also has a PICU (pediatric vs. neonatal) for older kids that are admitted later in their lives, and a med-surg (medical/surgical) unit for older kids requiring a little less personal attention. For more specialized care, there's also a hematology/oncology (cancer) center, an orthopedics department for motor/skeletal issues, and I'm sure several other units that we don't walk by every day on the way to the NICU. Andrew will probably be in the NICU for almost all of his time there. As he progresses, he'll go from having a dedicated nurse to sharing a nurse with another baby, and then potentially could move to med-surg or the PICU to resolve some final feeding issues before coming home. However, he's a long way from either of those, and we anticipate spending many more months (hopefully) in the NICU.

We've met C's parents (and many others) and have realized that it doesn't really matter what your kid is in the NICU for....there's really nothing that can prepare you for it, and you end up going through the same sort of emotional process. No offense to any of you, but it's incredibly hard to comprehend what the NICU experience is like unless you've been through it with your child. We completely understand what they're going through....in some ways, it's like reliving those early days all over again. It's comforting to be able to share the experience with someone who understands and empathizes...even the doctors and social workers can only do so much.


Just posting so you know everything is okay. I'm more than half asleep, so I won't try to write anything profound. He's continued to have a bit of a high heart rate, but he was calm and happy while we were there.

More updates later...if I have the opportunity, I'll make up for the short post with a recent video.

Oct 13, 2007

Motor Running Hot

Andrew had another grumpy day today. His heart rate and blood pressure were high, possibly because they discontinued his heart medication yesterday. They had him on something last week while he was having the same issues....it seemed to be effective, because it came back soon after the medication stopped. I'm not sure of the root cause, but we'll definitely be talking to the doctor about it at our next family conference. I'm overstating things a bit when I say he was grumpy, because he really didn't seem all that upset, but I think having a high heart rate made him a bit nervous. He was breathing a little hard and had a scared look in his eyes at times.

That being said, he's still doing well on the ventilator. He's still at four sprints per day and he's still getting great results on his follow-up blood tests. Let's hope he continues with the same pattern.

I don't have a whole lot of new info today, so I'm going to try and get some sleep. Have a nice weekend.

Oct 11, 2007

Early Halloween

A few pics from the last couple of days.

He's been on the warm side recently, so we opted against putting the hat all the way on...we'll see how he's feeling when Halloween hits.

His cheeks are still swollen from the steroids. He's on a much smaller dosage, and they're actually getting a tiny bit better every day, but he's going to look like the Godfather for a while.

Happy Birthday To Me!

Yes, today is my 29th birthday. It's nothing particularly special, because I plan to be 29 for the next 20 years. Since I can't have what I really want for my birthday (hint....it involves a tiny person living in our guest room), I'm quite happy with a good week for Andrew and a boatload of well-wishes. Thank you for your comments, emails, and cards....I appreciate them all.

We both had to work today, so we didn't get to do anything too special. We headed to the hospital after work, then chowed down on some Greek food. A quiet evening at home with some TV (and more work) is now in progress.

Daily Recap

Andrew seemed a little grumpy today, but it was probably because he had a very busy day. First, he spent an hour in his chair while sprinting. They were only planning on putting him there for 10-15 minutes, but he seemed to be enjoying it. He was comfortable and relaxed enough to start to fall asleep, so they just left him there for the entire sprint.

At some point during the day, they got the results on cultures from a few days ago. His PICC line and arterial line both came back positive for some form of yeast, so they removed the PICC and replaced the arterial line. He's now getting almost everything through his central line (in his chest). He came off a couple of medications, so he's back to one row of IV pumps. They've also started to wean his steroid dosage....it will be a very slow process, but it's good that they're getting started.

He was massaged and exercised, read to and examined by doctors from a different department. By the time we left this evening, he was starting to look annoyed and paranoid that more people were coming to poke and/or prod him. Fortunately, he handled everything pretty well, and had a good day on the ventilator. They've continued to lower his pressures and he's still doing four sprints a day, an hour each time.

His feedings have been increased to 9cc per hour, which is a good amount until he can get the stomach valve surgery. We're still waiting to see how he does with his respiratory issues before they schedule the stomach surgery. Though he's had a few good days in a row, his left lung could cause a problem (and need to be removed) at any point, and we're still dreading the next attempted extubation.

Everything considered, it's been a great week. We're not letting our enthusiasm overwhelm the harsh realities that he's still faced with, but it's been really nice to see him awake, behaving, and getting stronger.

Stay the Course

Andrew is continuing the trend, doing well on low settings and getting upset pretty infrequently. He's now sprinting four times per day, twice with the night nurse and twice with the day nurse. None of his follow-up gases have been outside of parameters, and most have been on the very low end.

Today someone from Occupational Therapy came by and showed us some exercises to keep his arms strong and flexible. Apparently "OT is for the top, PT is for the bottom," meaning that Physical Therapy works the legs and torso, while Occupational Therapy works with the hands, eating, and other upper-half behaviors. He's wearing splints on his hands in order to keep his wrists strong....they're on a three-hours-on, three-hours-off schedule.

He's tolerated all of his new exercises and massages pretty well. Occasionally he gets a little overwhelmed and tells us he's in a bad mood....today during his sprint, he was simultaneously getting a breathing treatment and an upper body massage. Eventually he expressed his displeasure. More info this evening after they try him in his chair.

It looks like RSV season is under way, meaning that they'll soon shut down the NICU to all non-parent visitors. RSV is an upper respiratory virus that often spreads during flu season and can be very dangerous to the elderly and children with weak immune systems. Since that describes just about every baby in the the unit, they are particularly sensitive to any potential outbreaks. Starting in October every year (the exact date is different depending on RSV cases in the county) and ending in March or April, only parents are allowed into the unit...even our four-person visitor list is ineligible.

Oct 10, 2007

Trending Upward

Andrew has had a really good few days in a row. So good that the doctor expressed surprise today....not particularly heartening, but a little bit funny. They've continued to turn down the ventilator settings faster than they were expecting; he's at eight breaths per minute, which is minimal for this ventilator. They're now turning down the pressure support and extending the length and numbers of sprints. He's sprinting for just over an hour, twice a day, and they may soon move it to four times a day. They're actually a bit concerned that he's doing too well and not having to work hard enough. If he's not challenged by his breathing circumstances, the muscles he needs to use won't get enough exercise....extending the sprints should help with that.

The physical therapist came by and examined him today, checking his current condition and putting together a plan for getting him stronger. She showed us several exercises we can do with his legs to increase his range of motion and prevent his muscles from further atrophy. She showed us how his right leg is a bit stronger than the left, how to move his feet to give his ankles better flexibility, and the best positions to keep him in for further development. On Thursday, they'll put him in a specially-made chair to get him used to another position. Most NICU babies take a little while to get used to sitting up, so they don't anticipate a long first stay in the chair. Little by little, they'll increase the time he spends there.

Everything has been pretty positive during the last few days....good heart rate and blood pressure, no fever, increased feedings, and no major fits. That being said, this would be a good time to knock on wood. Andrew needs to string together a few of these good periods, as he'll eventually need to behave permanently.

Oct 9, 2007

Back to Informative Posts

I know it's been a few days since I actually provided some medical information, which may be good or bad, depending on your patience for my jargon. Andrew's had a few good days in a row, medically, and we're proud of him for handling everything so well. It must be disorienting and frustrating to be put to sleep for a month, and to wake up weak and unable to move like you remembered. Fortunately, he doesn't seem to be upset or in pain....he continues to be curious and interactive (when awake), and comfortable and relaxed (when asleep).

His lung function has been surprisingly good recently. The doctors planned to wean off of the ventilation very slowly, to give his muscles a chance to recover and get stronger. Though he still doesn't have anywhere near the muscle definition he used to, he is breathing pretty well, and has been able to wean quicker than expected. He started at 30 breaths per minute, but at one point was up to 40. Now he's down to 12 breaths per minute, which is nearing minimal levels. The pressure provided by the ventilator has also dropped significantly from its initial settings. Lastly, his oxygen rate has hovered between 26 and 40....he's still not near room air (21%), but he's doing well at these levels.

Since he's doing so well, and getting test results with especially low CO2 levels (for him), they decided to start sprinting him. Sprinting means turning off the breaths given by the ventilator and letting him breathe on his own. In order to overcome the difficulty of breathing through a tube, pressure is added during his breaths....they call this "pressure support." He started sprinting yesterday, one hour at night and one during the day. So far his blood test results (taken 20 minutes after the end of the sprint) have looked great. They'll probably increase the time and/or frequency over the next week.

He's still being fed steadily through his stomach tube. They've been keeping his feeding volumes pretty low recently, but are now starting to come back up. From 6cc per hour, it was dropped to 3 per hour, but has now steadily climbed back up to 7. It's good that he can get even this small level of milk, as that will help his digestive system stay active and efficient. The rest of his nutrition consists of IV nutrients and IV lipids (fats).

There were some unexpected issues that plagued Andrew last week. His rapid heart rate seems to have subsided, perhaps due to the drop in steroids. He can still get upset and raise his pulse, but his "upset level" is around 180, which is similar to what it used to be....when he had his issues last week, his heart rate was getting up into the 220's. He has also had an on-again-off-again fever recently. That fever seems to have gone away; he hasn't needed any medication for it and hasn't shown signs of an increased temperature in the last two days.

As you saw, D got to hold him on Sunday. It had been a long time, and was definitely a great treat. It's a huge pain to move him into her lap, because of all the tubes and wires; it took three nurses to get him situated without accidentally pulling out a line. Once he was in her arms, he looked right into her eyes for a few minutes, then got comfortable and fell asleep. He was asleep for over an hour, occasionally popping his eyes open (Surprise!) and then immediately going back to sleep. It would have been nice to hold him before he went back on isolation, so there could have been more skin-to-skin contact, but if wearing a big yellow gown means we get to hold him, then a big yellow gown it is.

Andrew is still very weak, and it will take a while for him to fully recover. Each day he moves a little bit more. First it was just his eyes, then his fingers, then his hands....now he's moving his arms up and down. He's probably at about 20% of his previous strength, which prevents him from pulling at his lines (a problem we used to face) but isn't very fun to watch. The physical therapists are going to come work with him, performing stretches and exercises that will help him regain his strength.

The long term plan is unchanged since last week. They'll give him the opportunity to get stronger, slowly weaning the ventilator, then continue the sprinting with increasing durations and frequency until he seems ready to be extubated. We don't expect that to happen in the next couple of weeks. The possibility still remains that he'll need to have a portion of his left lung removed, but so far it's behaving itself. He'll also need stomach valve surgery, which can be scheduled any time.....for now the focus is on getting him off the ventilator.

I promised more pictures, and I'll post some over the next couple of days. Since he's now awake and moving, I might post some new video as well. Hope everyone has a great week!

Oct 8, 2007

Ask Drew: Weight Update

Angie said...

Any idea how much weight he has gained or how long he is?

As of his last weigh-in (on October 3rd), Andrew was 5.8 kilograms, which is a little over 12 pounds, 12 ounces. We haven't gotten an accurate length recently, but perhaps that will be easier when people from the Physical Therapy department come to work with him.

Bad News and Good News

Well, there's bad news and good news. The bad news is that Andrew's back on contact isolation, which means that we have to put on gloves and gowns every time we want to touch him (or anything in the room). Fortunately, that's the only bad news for the day...the good news is below:

That's right....D got to hold him today! It was a huge undertaking, with all his tubes and cords and sensors, but totally worth it. More about the process later.

Also later, an update on his respiratory progress (great gases, more vent weaning, and sprinting starting tomorrow!), a checkup on his fever/heart rate (recurrent fever under control, much better heart rate), and more pictures. I hope this picture, and the knowledge that we had a really nice day with him, will hold you over for now.
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Oct 7, 2007

Surgery Saturday (not for Andrew)

We didn't get to spend a whole lot of time in the NICU today, as it was a busy day for surgeries (on other babies). Luckily, he was awake and alert while we were there, so we got an hour and a half of good quality time. They turned down his ventilator some more, based on very good blood tests, and he's been breathing well. He's moving a little more every day, though it's mostly still small hand and arm movements, and some squirming in his legs and torso.

He's been having the same sort of repeating issues for the past several days....a high heart rate and/or a fever. They can treat each medically, and for the most part he's been better recently, but they have to pay close attention and catch it before it has a chance to get bad. When his temperature starts going up a bit, they cool a piece of gauze with some water and put it on his forehead. If it goes up further, then they give him some Tylenol. With his heart rate, they can give him medication, and generally try to keep him calm and relaxed. These solutions have worked well and kept him happy during the last few days.

Not much else to report today....time for bed.

Oct 6, 2007

Fine Friday

Andrew seems to be doing better with the fever today. It came and went a few times last night and into this morning. The Tylenol seemed to do the job for a while, but it would return after the drugs wore off. After a couple of cycles, it seemed to go away entirely. They also had a cooled blanket that they were using to take the edge off and protect his vital organs. His temperature never got too high, and he was alert and unconcerned through much of it....he didn't even seem to notice that he had a fever.

He's continued to do well on the ventilator, occasionally having fits and needing more support, but generally trending toward better settings. He had a little leakage of stomach secretions around his feeding tube, so they've lowered the volume on his feedings temporarily. He's responded well to the decrease in steroids from a few days ago, and most of his remaining medications seem to be working as intended.

So far they're sticking with the current plan....focusing on getting his muscles stronger, weaning very slowly on the vent, and working toward extubation. It could take a month or more before he's ready to try being off the ventilator again, so we'll need to be patient and enjoy the fact that he's awake and interacting a bit again.

And for those who are wondering, I have no idea where the video below came from and I was just as shocked as all of you when I saw it. I have to assume the snake had been de-fanged from the baby's lack of reaction to the bites. I am always amazed by differences in culture that can result in something as foreign as this to Western sensibilities....I'm sure it's some common rite of passage, but it's certainly freaky to watch.

Oct 5, 2007

Some Perspective

Yes, Andrew has issues. But at least he's better off than this baby....

Thursday Update

Andrew had an up-and-down day. On the up side, he's been taken off isolation, which means we no longer have to put on gloves and gowns before we enter his room. Today was the first time I've been able to touch him with my bare hands in almost two months. He also had a pretty good day of respiration, breathing well and recovering quickly when upset. The rest of his sedation was turned off and his steroid dosage was cut in half, both of which he responded to nicely.

We had a meeting with the on-call doctor as well. We didn't have many new questions since the last time we spoke to a doctor, and there wasn't a lot of new information. His left lung has inflated, but isn't causing problems; his right lung is still well-inflated and working well. He has some pretty severe muscle atrophy because of his long-term sedation and steroid treatments, so it will be a slow process to get him back up to speed and ready to extubate. The "accessory" muscles that CDH babies use in place of their missing diaphragm need to build their strength again, and until then they will be weaning the ventilator very slowly. Physical therapists will come work with his arms and legs to get his other muscles back in shape, and the simple act of removing the sedation will allow him to help himself.

This evening, some time between 6:30 and 9, Andrew spiked a fever. His heart rate was elevated and his temperature was up, though he was still breathing fine. They gave him some medication for his heart, acetaminophen and ibuprofen for the fever, and put ice packs around his head and groin areas as a precaution. The fever broke and his heart rate dropped in response to the medicines; his temperature never got high enough to do damage, and he was awake and calm through most of the process. An infection/fever certainly is never a good thing, but they got it under control quickly and he handled it well. He's now resting comfortably.

Oct 4, 2007

We're All Allowed Bad Days....

After some off-blog feedback from my last post (Don't freak out....it was just a grumpy day), I realize that perhaps I sounded angry at the hospital or at Andrew's course of treatment. I'd like to clarify that in no way was my mood yesterday in any way related to misgivings about his care.....we have none. We are confident that he is getting the best care possible, and that the doctors are exploring all potential issues and treatment options, both within the hospital and without. My frustration yesterday was due to Andrew's bad day, my own fatigue, and a month's worth of missing his personality.

The other possible misconception I've noticed recently is the idea that the doctor's "don't know" what's going on with some aspects of Andrew's condition. For instance, if he has a high heart rate, I might say that they have no idea why his pulse is so high....this isn't entirely accurate. The real problem is that there are so many factors involved in his disease, it's often difficult to tell which factor is causing the problem at any given time. When it matters, the doctors run the appropriate test (x-ray, ultrasound, CT scan, blood test, mucus culture, etc.) to determine the precise issue. When it doesn't particularly matter, or the issue is a known and/or expected side effect, they treat it and move on. In those cases, they chalk it up to one of the following known issues....I've left in the medical terms for efficiency:
  • 95% left-side diaphragmatic hernia
  • severe pulmonary hypoplasia
  • pulmonary hypertension
  • intestinal malrotation (and corrective surgery)
  • compressed right bronchus
  • hyper-inflated left lung with decreased vasculature
  • bronchospasms
  • gastro-esophageal reflux
  • long-term ventilation
  • artificial nutrition
  • narcotic addiction
  • extended steroid use
  • urinary tract infection
  • staph and steno bacteria colonies
  • muscle wasting from long-term paralysis
  • I'm sure I'm forgetting several issues, but we can stop there
Perhaps I haven't helped my cause by pointing out everything that's wrong. I'm not sure exactly what my motivation was....I guess I'm trying to give a realistic view of the seriousness of Andrew's condition. What I'm not trying to do is cause anyone to lose hope, to pass along any sense of frustration I might feel, or to ruin anyone's day. We appreciate everyone's well wishes and positive thoughts, but I want to continue to be realistic about the hurdles he still needs to overcome. He's in the right place and getting the right care, maximizing his chances for success....but in the end, it's going to be up to his anatomy, his drive, and his will to survive.

A Little Venting

Today was a bit discouraging. Andrew behaved himself last night and this morning, aside from some understandable oxygen desaturation when faced with a seriously dirty diaper and a chest ultrasound. The ultrasound was to check out his heart, because his pulse has been running a little high....the results were normal (no obvious problems). He's also been getting daily chest x-rays to keep track of his left lung. It's definitely inflated, and seems to not be doing anything useful, but hasn't hyperinflated to the point of pushing his heart into his right lung.

When we arrived, his heart rate was high, and stayed high for quite a while. When it finally started to come down, so did his oxygen saturation. When they turned up his oxygen to help his saturation, then his heart rate spiked again. It was a very odd phenomenon, because these would be normal results if he were upset and causing problems. However, his eyes were closed almost the entire time, and he didn't look particularly upset. It's tough to watch the numbers climb and the alarms go off, without having any idea about the cause. It's likely due to the decrease in his sedation, perhaps combined with some steroid reaction. They cut his sedation dosage in half, so it may take him a few days to get used to it.

His erratic behavior combined poorly with my lack of sleep from last night and put me in a pretty bad mood. Standing there at his bedside, hearing the alarms go off and trying not to fall asleep, it was hard not to get discouraged. Glancing around the NICU, it's painfully obvious how little progress Andrew has made in the last couple of months. The doctors have repeatedly told us that this is a long-term process, and that we have to focus on month-to-month progress rather than day- or week-long time scales. Well, he's definitely no better than a month ago...on the contrary, he has more medication and artificial nutrition, more lines and wires for IV drips, and significantly less stability. At the end of August, he was behaving pretty well, strong as a bull, sprinting for nine hours a day, and preparing to be extubated. Now he's been asleep for a month, all his muscles have atrophied, and he's having unexplained and erratic tachycardia (high heart rate) and high blood pressure. Combine this with what we know about his compressed right bronchus and useless left lung, and it's a bit sigh-inducing. Let's just say that it wasn't a pleasant hospital visit.

NOTE: Just before we left, his numbers started to level out, assisted by an extra dose of Ativan. He's been fine since then, all his blood tests have looked good, and he's behaving much better than he was earlier. The breathing rate, pressure, and oxygen levels being provided by the ventilator are all better than they were two days ago. He's fine, and in the short term they're not concerned about him having problems too severe to control with medication. The rest of this post sounded very dire and grim....though I can't say we're not worried about his chances of eventual recovery, I don't want to worry anybody unnecessarily. I just needed to take an opportunity to unload.

Oct 3, 2007

Even More Recent

Here are a few from today.....

Here's lookin' at you...

Still a lot of tubes and wires....
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Recent Pics

Smushed face, but open eyes!

He only looks mad...he wasn't really.

From before he woke up, going for the spread-eagle look.

Last week he got a new room and a new bed.
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'Roid Rage

Another day, another minor fit. This one was a bit different than yesterday's, consisting mostly of low oxygen saturation, high blood pressure, and high heart rate. He's gotten a couple of steroid doses recently, and the doctor decided this was most likely a combination of 'roid rage and narcotic withdrawal. He's now bigger and awake, and was still on dosages meant for a smaller baby. They've upped the dosage times and volumes on his Ativan and Methadone, in preparation for lowering the sedation tomorrow.

As far as respiration goes, he has been doing pretty well...they've continued to wean the pressure and rate on his ventilator, and should be able to lower it even more once his sedation is downgraded and he's breathing more on his own.

I don't have a whole lot else to report...he's been alert and friendly every time we've been there, but he still looks a little confused. He's also weak and well-sedated, so he's only really moving his eyes and fingers. We'll see how he does with fewer drugs. Until then, I'll make up for this short post by uploading some pictures. His face is still significantly swollen, and the tape on his tube is contorting his mouth into an odd position, but it's been wonderful to see his eyes open. We've been showing him books, staying in his line of sight, and putting him to sleep each day before we leave.

Oct 2, 2007


Andrew had a great night/morning, a rough afternoon, and then a nice early evening. He's been laying on his stomach for the last few days, and they were concerned that his stomach tube was pressing on his abdomen and causing soreness. They flipped him onto his back this morning....he responded very well and was behaving well for the nurses. In the early afternoon, he started working harder to breathe, his oxygen saturation dropped, and his CO2 sensor started to spike. A blood test confirmed that his CO2 was very high, though he wasn't showing any outward signs of being upset. They turned up the pressure and rate on his ventilator and gave him an extra breathing treatment and he recovered, but it's a bit concerning that he had such a reaction for no known reason. A chest x-ray showed no major anatomical changes, so it wasn't a hyperinflation problem with his left lung....it could be an issue with his right bronchus, or simply airway spasms.

After that, he behaved very well. He was awake and happy when we got there, his follow-up gases were all normal, and he's been good ever since. His ventilator settings are back to where they were this morning, his oxygen is back at 30%, and he hasn't given a repeat performance. We had another nice visit with him, then left him sleeping peacefully. I'll post some pictures when I have a chance.

Oct 1, 2007


Andrew was still awake when we got to the hospital. They haven't lowered his sedation at all (only the paralytic), so he's pretty out of it still, but he was able to move his fingers and toes, and definitely was looking around quite a bit. It was nice to see him awake again....it'll be four weeks tomorrow that he's been sedated and paralyzed. When we arrived, his heart rate was pretty high, though he wasn't showing any outward signs of being upset. We turned his music on and sat and talked with him for a little while....his heart rate lowered to a normal resting level. When D pulled out a book with pictures of dinosaurs, his eyes flickered all over the page. I also got some pictures, though I'm not sure how they turned out.

Before we left, we went through some range-of-motion exercises with his arms, massaged his arms and legs, and got a rainforest soother (it plays music and jungle noises) back into his crib. Just before leaving, I "hit the off button," which for him is a particular method of rubbing his head....it makes him fall right asleep. He was asleep and perfectly calm when we walked out the door.

He has continued to do well with his oxygen saturation and CO2 levels, and has been behaving well for the nurses. He's been stable and happy whenever we check in over the phone. We're not sure what the plan is for this week, but we'll have a meeting in a few days to discuss everything with the doctors.