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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

Early-ish

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.....

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.

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.

Zzzzzzzzzz......

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.