Jul 31, 2007

Can't Last Forever

Well, today was the one step back after two steps forward. Everything I said yesterday is on hold because Andrew didn't have a great day. First, he spit up a bit and they stopped the feedings. All his other digestive indicators look fine (bowel sounds, stool, clean x-ray, etc), but they want to be extra cautious. They put him on medication to help with his reflux (Prilosec) and will probably try again tomorrow.

He also had a bit of a setback on his respiration. His first sprint went fine (he slept through it) and the second one was okay, though they stopped five minutes early. They increased the duration to an hour and a half, and his third sprint was scheduled for today at 2:30pm. He was fine for the first hour and fifteen minutes, then got upset. His numbers went wild, especially his CO2. It took a couple of hours to come all the way back down, during which time they upped his breathing rate (to 15 breaths per minute). Everything was calm quickly enough that they didn't need a chest x-ray or anything similar, but they canceled his scheduled sprint for tonight.

As we've been told many times, we need to take it a day at a time, and I think that's never been more true. A day or two should do wonders on getting him stronger, and they'll probably re-think the method they're using for his sprints. I'm not worried about him long-term, but it didn't make for a very fun day.

In Her Arms (Take Two)

Think Mommy's enjoying this?

Asleep and comfortable.

You lookin' at me?

Cozy in bed.
Showing off his guns.


They say that clothes make the man...good thing he can finally wear them.

Medical Update

Here's a quick update on Andrew's progress, from a respiratory and digestive perspective.

On the ventilator front, they have started something called "sprints." Instead of coming off the vent immediately, they're going to let his lungs (and associated muscles) get some exercise first. Twice a day, they turn off the normal ventilator and hook his tube up to a CPAP machine, which provides oxygen at a constant pressure. Instead of giving ten breaths per minute, it doesn't give any full breaths. Andrew has to do all the work of breathing, without any help beyond the constant flow. He came through is first sprint perfectly, sleeping through most of it and having no problems breathing. After a day or two at this rate, they would then increase the duration, frequency, or both. After a few days, he may be on sprints of three hours, three times a day. At some point, they'll be happy with his workouts and try him completely off the ventilator again. The exact timing will depend on which doctor is making the decision on any given day.

On the digestive front, he's also doing very well. The bile completely cleared up from his stomach secretions two days ago, they removed his nasal tube yesterday, and they started feedings through his G-tube today. They're starting with very small quantities, 1cc per hour, every hour. They call these small amounts "trophic feeds," used to stimulate his digestive system without actually providing any nutrition. They will keep this up until they decide to increase the volume; the timing again will depend on how he responds and which doctor is making the decision.

The surgeon came by this morning and removed Andrew's bandages. His new scar looks great and is healing nicely, though we noticed something a little strange. Since the incision included his belly button and was sewn back together straight, without taking his navel into account, I'm pretty sure he won't have a belly button when everything heals. In fact, if it heals well enough, maybe he'll look like this when he's older:


There's a lot happening all at once, but so far it's all good.

Baby Transport

D got to hold Andrew again today, for about an hour and a half...it'll be my turn the next time we have the opportunity. I'll post more pictures at some point, but here's a bit more description.

Getting him onto your lap is a pretty difficult process, because of the various tubes in and around him. First, D sits in the chair, with several blankets built up on her lap to raise him up a bit. A nurse and a respiratory therapist (RT) come perform the actual transfer; the nurse lifts Andrew and moves him while the RT holds his breathing tube in place. They usually have to disconnect his tube, which is routed through the bars of his crib, to reconnect it outside the railings for easier access. While they move him, I have to stand on the other side of the crib and make sure that his other tubes (arterial, IV, and PICC lines) don't get tangled, stretched, or pulled out of his arms. When we first held him last night, they also had to add some additional tape to his arterial line. Once he's in place, though, it's all worth it. Both times D has held him, he stared intently into her eyes for 10-20 minutes, then went right to sleep. He's obviously very comfortable in her arms. It's a very positive experience for both of them (and me), and we hope to take advantage at every possible opportunity.

Jul 30, 2007

The Conversation

Apparently, it's all about talking to the right people. We ran into the head of the NICU last night:
  • D: "Who's going to be the gatekeeper on when we can hold him?"
  • Dr. K: "You've never held him before?"
  • D: "No."
  • Dr. K: "Oh, you're going to hold this baby."
  • D: "Sometime soon?"
  • Dr. K: "No, now! It's been 44 days...this baby needs to be held!"
  • D: (tears forming) "Really?"
The last time we asked the same question, we were told that we should probably wait to hold him until:
  1. He was extubated again.
  2. His arterial line was taken out.
  3. He was tolerating full feeds through his G-tube.
Fortunately, it looks like we've broken the seal. D just talked to today's nurse, who said we can hold him again when we go down there this afternoon.

Look, We Have A Baby!

For the first time, I'm going to let the pictures speak for themselves...they really don't need any explanation.




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"I Think He Likes Me"

It has been a very long day. It started in LA and the OC, and ended in San Diego...by the time we got home, it was already after 8pm. We thought about staying at home and going to bed, but instead decided to head down and see Andrew for a little while. We planned on leaving the hospital by 10pm, yet somehow managed to stay until 11:30. Fortunately, they made it worth our while...

At 10:21pm, 63,683 minutes after Andrew's birth, D held him for the first time. Thirty-five minutes later, I joined the club. It was a really wonderful moment for both of us, and completely unexpected. He seemed to feel very comfortable with us (mostly with D) and even managed to fall asleep in her arms. When I was holding him, he decided not to fall asleep....instead he threw up on me. The image of Andrew in D's arms was very sweet, as it was when she looked up at me and said, "I think he likes me."

I really have to go to bed now, so I'm going to post a few pictures and leave the rest of the description (as well as a medical update) until tomorrow.

Jul 29, 2007

Resting Comfortably

A full day on the ventilator has reinforced the fact that he may not have been fully ready for extubation. While the two days were definitely good for his muscle development and breathing practice, he's much more comfortable now that he's got some extra support. He fussed for about an hour after they put the tube back in, mostly getting used to the feeling again. After that, he was far more relaxed.

In the last day, he's moved almost all the way back to his pre-extubation ventilator settings. He's down to 12 breaths per minute, which is the lowest they'll go for right now...yesterday, he was at 20. They've turned his oxygen down from the 50's (when he was extubated) to the 40's (yesterday after re-intubation) to the 20's...right now he's at about 26, which is only five percent above room air.

The doctors/nurses/respiratory therapists think that two or three days should be enough for him to take a breather and try again. There's no set date, but the doctors will make a decision whenever they think he's ready. I will certainly let you know and take more pictures when it happens.

On the feeding front, things are starting to look better in his stomach, but he's not quite ready. He still has some bile coming out of his stomach tube, though it's gotten lighter and less plentiful. They've taken the suction off his NG tube and are letting it drain using gravity...nothing has come out today.

Tired...going to bed...more late tomorrow night.

Jul 28, 2007

Best.....Andrew Pictures....Ever!

The off-the-shoulder look is back in style.

Look right!

Look left!

Now purse your lips like you're kissing mommy!

The full view...crib, mobile, outfit, blanket, etc.

Sleeping peacefully.

Enlarge this one and check out his eyelashes.

Extreme close-up for maximum upper lippage.

It almost looks like he's wearing lipstick in this one...but that's his natural color.

Jul 27, 2007

Nice While It Lasted

I guess I should get the bad news out of the way before I upload Andrew's cutest pictures ever. He went back on the ventilator this afternoon, after spending 50 glorious hours extubated. Actually, his time wasn't that glorious, thus the necessity for additional ventilation. After two days, several increases in flow and oxygen, and a bit too much required effort for breathing, they decided to give him a break. The final straw was a minor fit that raised his CO2 level and lowered his pH to almost-unhealthy levels. Instead of waiting for things to get worse and cause damage, they re-inserted the tube. It's not a huge setback; they'll probably try again in a few days. Two days is a lot longer than some babies make it on their first try, and it was definitely good practice for his lungs.

I can't help being a bit upbeat about it, for two reasons:
  1. After re-intubation, he looked much more peaceful. After a brief fuss because of the tube in his mouth, which mostly involved sticking his tongue out at us, he felt much better. He was visibly more relaxed, his breathing was less labored, and he was able to stay awake for a long time without getting upset.
  2. This morning, before he went back on the vent, I got some great pictures. They moved him to a crib because he doesn't need the bed warmer any more, they put a little shirt on him, and they finally had him on his back. The combination made him much more photogenic, and I took quite a few pics. I'll post them shortly.
Again, I'm not really worried about him being ventilated...seeing him free and anxious was more stressful than the ventilator. It was a long, draining day, but at least I don't have to worry about him tonight...after seeing him so upset, we spent the last two days just waiting for the other shoe to drop.

Thirty-Three Hours and Counting

At last check-in, Andrew was still off the ventilator and responding somewhat more reassuringly to being awake and alert. He still gets fussy very easily, but has also had a few periods of waking calm, which is better than I could say yesterday at this time. He's currently on his back, though they've flipped him several times to vary his position and keep him comfortable. I didn't get any exciting pictures, as he was on his tummy and covered up by a blanket most of the time we were visiting. I'll post some blanket-covered shots tomorrow, if I get around to downloading them.

We're hoping for continued boredom, as far as his condition goes. The more relaxed he is and the more he sleeps, the better he'll be able to heal without getting so upset that he causes himself problems. His oxygen saturation goes up and down with his moods, the bile from his stomach seems to be slowing a bit, and his gases have generally been good. If he can continue to breathe without having to work too hard, then he might be able to stay off the ventilator for a while. This could be made more difficult as they start to wean his steroids and as he gets more tired from breathing on his own...cross your fingers that he's enough of a bruiser to handle it gracefully.

We also had a "family conference" with the doctor and social worker today. It's a routine meeting that takes place every few weeks (this is our second) and allows us to ask the doctor questions in a somewhat more relaxed environment. Sitting by Andrew's bedside isn't really conducive to remembering detailed questions (or their answers). I might include some of the information we gathered in various posts over the next few days, but here's the gist: They are cautiously optimistic, as his lungs are progressing well, but there are a lot more hurdles to overcome before we can even think about bringing him home. At the moment, there are still two or three reasons why we can't even hold him. Immediate next steps involve stabilizing him completely off the ventilator, working on withdrawal symptoms from the morphine, and waiting for his intestines to calm down before we can resume feedings.

Jul 26, 2007

Before And After

Some of you may want to know what Andrew looks like when he's upset. Here's a shot of him from a couple of days ago, having a relatively mild tantrum. I say that it's mild because his mouth isn't open (crying), and he didn't desaturate too much:


Here's one to make you feel better after seeing him squirm. This was Wednesday, sleeping peacefully:

Good News For Now

If you take a look at the pictures below, you may notice something looks a bit different. That's right, Andrew had his endotracheal tube taken out today...his mouth has been freed. They took it out at 2pm today, and it was still out as of 10pm. We expect that it might have to go back in, but it's great to finally see his upper lip for the first time in forty days. The vent has been replaced by nasal cannulae, which are small prongs inserted into his nose and connected to an oxygen source. These provides oxygenated air, which helps keep his oxygen saturations high.

As it turns out, the respiratory therapist was worried about the wrong thing. Andrew's "shallow breathing" while he is asleep hasn't turned out to be a problem at all...in fact, his numbers are great whenever he's asleep. Instead, we have the opposite problem...Andrew is getting really fussy every time that he is awake. Literally every time he has fully woken up since 2pm today, he has gotten upset, started to cry, and lowered his oxygen saturation. The nurses have been able to compensate by temporarily turning up his O2 percentage, but at some point he needs to calm down. If he continues like this, he's going to tire himself out, and then he won't be able to work as hard as he needs to stay off the vent. The nurse said that it's relatively common for babies to do fine for the first 24 hours or so, then get tired and require additional ventilation. If, on the other hand, they can last more than two or three days, their odds of staying off the vent are much better. I'm prepared to hear that he's back on the vent every time I call, but I am also quite happy that he's off for now, even with the additional tantrums.

It looks like Andrew might have my upper lip, which is something we've pondered many times since he was born. It's very cute, even when he's crying. Speaking of crying, the ET tube sat right next to the vocal cords, leaving them a bit bruised. So when he cries, he's hoarse...I'd say he sounds a bit like a duck, quacking with every sob. He's also shown off his muscles, since he tends to do push-ups when he gets really upset, and he's been on his tummy for most of the day.

The pictures I got aren't great because of his position, but you should be able to catch a glimpse of his upper lip. Everything is a little red from the tape, and covered in spit in the last picture...I'll get better pictures tomorrow.

UPDATE: As of 4am, he's still off the vent. He's behaving only slightly better when awake, but he's been sleeping most of the night. They turned up his "flow" of oxygen through the cannulae, which should help him relax and not have to work as hard to breathe. We'll see if that makes a difference in his moods.

Where's Waldo?

See anything interesting in these pictures?



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Jul 24, 2007

Combination Post

I figured I can get away with less information if I include a picture, so here's a shot from a couple of days ago. The ventilator was in my way, so I had to take the picture from above...he followed the camera with his eyes, everywhere it went.



As for actual information, Andrew's mostly the same. He's now down to ten breaths per minute on the ventilator, which is as low as they'll go with it. His last CO2 level was low enough to wean more, but they consider ten to be "minimal" settings. That doesn't necessarily mean he's ready to be extubated, but it's certainly one of the many requirements. The respiratory therapist says he takes pretty shallow breaths while he's asleep, which is something we all do, but it's a bit more of an issue with his smaller lung capacity. To help him out, they'll probably leave him on a different form of ventilation, which will provide oxygen through his nose at a low pressure. That's something to look forward to...perhaps next week.
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Extra Boring

There was almost zero change today in anything. All Andrew's numbers are exactly the same as yesterday, and he his still comfortable and resting well. He seems particularly comfortable around us, and as such feels free to fall asleep in our presence. He was sleeping much of the time, except when being moved, changed, etc. We changed his diaper today and the nurse commented on how well he was tolerating it...I think he behaves better for us than he does for the nurses.

Andrew's morphine and Versed have been completely discontinued, meaning that he would have to be re-evaluated by a doctor before getting any morphine whatsoever. They are counting on the Ativan to calm him and the methadone to relieve any withdrawal symptoms, and so far they have been successful. All his gases have been "within parameters," even one taken today after having a dirty diaper. More importantly, he doesn't appear to be in any pain.

The suction on his NG tube is starting to look a little less green, so we're hoping that his bowels are calming down after the surgery. It feels strange playing the waiting game, as he's not really changing at all, either for the better or the worse. I'm certainly not complaining, because the last time I complained about the status quo he had a very bad week. That being said, it's frustrating being so close to both extubation and resuming feeding attempts, without taking those last few steps toward either.

I haven't taken as many pictures recently, because he's mostly covered by a blanket. They turned off the heater on his bed about a week ago and he's regulating his body temperature on his own. His head is peeking out and he frees his arms to wave them around every chance he gets, but it's hard to get a full-body shot without uncovering (and potentially disturbing) him.

Jul 23, 2007

Slow Moves

All the changes today were relatively minor, but they were mostly in the right direction. His vent rate is down from 14 to 12, his nitric oxide was dropped from 5 to 2.5, and his oxygen is still down at 25/26. They've stopped his Versed entirely and took him off a morphine schedule. They've replaced the Versed with methadone to deal with any withdrawal symptoms, and they're still allowed to give him extra morphine if he appears to be uncomfortable or in pain. He took one morphine dose earlier today, but hasn't required any this evening. No major desaturations, no noticeable pain, and no inconsolable tantrums.

He's continued to have some bile coming up from his stomach, so they re-inserted his NG tube for suction. This is normal, and his intestines may take a few days to fully recover from the surgery. They'll wait until this clears up before they start to feed him again. Sorry that there's not a lot to report, but being off the medication and continuing to come down on vent settings is definitely progress. With the ventilator running this low and his nitric oxide creeping down to nothing, changes may be few and far between....they're only measuring his blood gases every six hours, which will move to eight hours when he gets further past his surgery. Once his stomach clears up they'll have even less to worry about, and I may start posting a bit less frequently. I'll definitely get all the milestones in there, but he's been (thankfully) a little boring during the past couple of days.

Jul 22, 2007

All Quiet on the NICU Front

Andrew had another day with the same sort of progress. They're only testing his blood every six hours, but he's been consistently weaned off his ventilator. He's down to 14 breaths per minute, from 20, and steady on his oxygen. They've started to come down on his Versed drip, cutting the dosage in half. They'll replace the other half with methadone, which should help alleviate any dependency Andrew has formed on his painkillers. As they wean him further, they'll raise the methadone dosage, then slowly wean that down as well.

In the last 24 hours, he's only had one or two agitated moments, and turning up his oxygen temporarily has seemed to stabilize him reasonably well. He's still very much awake most of the time, and the nurses have used everything from personal attention to mobiles to music to television as methods for distraction. We brought in a small music player and tiny speakers to put near his head and play to keep him entertained. Hopefully we won't have to use TV as a long-term babysitter quite yet.

When they started Andrew on antibiotics two days ago (a half-day pre-op), they took blood samples for cultures. One of those samples, from his arterial line, grew some colonies, suggesting a possible infection. They've pulled that line and put in a new one on his other arm, they've taken cultures every day since (all negative), and they've been monitoring his other vital signs for any other signs of infection. All reports from surgeons, doctors, and nurses have been great. There's no fever, no belly tenderness, and no positive cultures. It's possible that the antibiotics have already started working, or that the test may have been contaminated from the plastic itself. Either way, he's shown no adverse effects and has continued progressing in the right direction, so no one seems to be worried.

For now, I believe their strategy moving forward will be more of the same...weaning on ventilator and narcotics, watching his G-tube for any output, and keeping him happy and stable at all times. Once feedings start, we'll talk to the doctor about their new plan.

Jul 20, 2007

He Is Strong Like Bull

Andrew's recovery is continuing well, and he's reacting in a really funny way. They gave him an extra dose of steroids just before the surgery this morning, in order to reduce inflammation, etc. The nurse said that was why he was awake so soon after his surgery, though she was expecting him to go to sleep after they started the extra medication, which is called Versed. Versed, medically known as Midazolam, has the following drug description:

"Midazolam is used to produce sleepiness or drowsiness and to relieve anxiety before surgery or certain procedures. It is also used to produce loss of consciousness before and during surgery. Midazolam is used sometimes in patients in intensive care units in hospitals to cause unconsciousness. This may allow the patients to withstand the stress of being in the intensive care unit and help the patients cooperate when a machine must be used to assist them with breathing."

The description mentions drowsiness, sleepiness, or unconsciousness four times in four sentences. He's also on regular doses of morphine and Ativan, and had major anesthesia this morning. One would think he would sleep for the next three days...but not our baby. When I called before shift change at 6:30pm, the nurse said, "Your baby is hilarious." Apparently he was wide awake the entire time, watching her every move, staring at his mobile, and even trying to turn his head to follow her movements. Just like his daddy, he doesn't want to go to sleep when anything interesting is going on. She finally had to put a blanket over his eyes to make him go to sleep.

The night nurse had the same report. He's been awake a lot, though entirely comfortable and not irritated. When he does get a little upset, he's been a lot more consolable than he was before the operation. His blood pressure is a little high from the steroid dosage, but he's still behaving very well and all his gases have been good. All his vent settings had gone up in the last few days when he was getting so upset, and they've been able to wean them back down today. His oxygen percentage is at 25%, which is the lowest ever. His vent is at 20 breaths per minute, down from 26 this morning. He's breathing above the ventilator while he's awake and sometimes when he's asleep, except for the few times the drugs have really kicked in and put him into a deep sleep. Suppressing respiration is one of the expected effects of the drugs, but he's been able to keep great blood gas levels even on low settings.

We're very proud of how he's handling his recovery so far. It appears that his discomfort in the last few days didn't involve a relapse with his lung issues, which have continued to improve. They'll continue with the same strategy, but probably won't try extubating him until he's on much lower doses of medication. He's on a few extra meds (the painkillers, antibiotics, etc) for now.

They've been getting some light green fluid from his NG (nose to stomach) tube, which is to be expected for a few days. In the morning they'll remove that tube and start doing everything through the G-tube (direct to stomach). In a few days, they'll be able to replace the huge plastic disk on his chest with a much more unobtrusive connector. As his stomach excretions become more clear, that will be a sign that his bowel has recovered from the surgery and is ready for feedings again. We'll be starting over with very small amounts of milk, but hopefully he'll respond better now that there aren't any obstructions.

It'll be several days before they remove the bandage over his incision, and probably ten days before the Steri-Strips and remaining tape are gone. We're not sure exactly what it looks like, but it's straight enough that it ruins our cover story. With his long, curving scar, we thought he could tell people it was a shark bite...the new scar will require a new explanation. Any ideas?

Post-Op Video

Here's a video of Andrew an hour and a half after finishing his surgery. Sorry it got squished somehow...it makes him look shorter and wider than he actually is.

Some Good Pics

Video later, but first a few pictures.

Here's lookin' at you, kid.

Post-op, with his new G-tube.

Active only an hour and a half after surgery.
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All Done

We just spoke with the surgeon, and everything went very well. There was no bowel damage, the Ladd's bands were successfully removed (though there were many), the appendix was removed, and the G-tube is in place. All his intestines have been placed, and he doesn't anticipate Andrew's twisty bowel will cause future problems. They tested the fix by flushing warm saline through his NG tube...it passed through without a problem.

He's back from the OR and in his NICU spot again. He already woke up from the anesthetic...he's not in any pain and they gave him more meds in preparation. Apparently Andrew could take a direct shot from an elephant tranquilizer and be unfazed. We'll get in to see him in a bit, but he came through with flying colors.

Going Well So Far

The nurse just came in to give us an update. The constriction was the Ladd's bands, as expected, and they were removed with no damage to the duodenum or loss of any bowel. He said that Andrew has a paricularly kinky intestine, but they were straightening things out where they could.

They've added the G-tube and are currently placing his intestines in their new location. They are discussing whether he needs the fundoplication to protect against future reflux, but haven't decided to do it (yet). They've just started wrapping up, which means it could still be a couple of hours, but he's done quite well to this point and things are going quicker than expected.

I'll post another update when he's out, probably after we've gone in to see him.

The Night Before

This will be the last post before surgery. I'll send a very quick update when we hear that he's out of the woods, then more details later. I wouldn't expect to hear anything until late afternoon, and even then don't worry if I'm late.

You're On Notice!

In honor of Andrew's surgery, Stephen Colbert has put a few things On Notice.

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Jul 19, 2007

Morning Update

Shortly after we left the hospital yesterday, as the nurse's shift change was going on, Andrew apparently had another "incident" that was worse than most of his recent tantrums. He was doing his normal thing, screaming without sound and flailing his limbs, when they decided to change his position just a bit to see if he would improve. That really freaked him out, and he decided to desaturate and drop his pulse below 100. Luckily the doctor and nurses were already there, moving him, so he was like that for only a very short period, while they took him off the vent and "bagged him" to have better control over his breathing. Both his pulse and his oxygen saturation recovered quickly after that (within a minute) and he was okay. With that short of a problem, there's no permanent damage done, but they definitely want to keep an eye on him. The surgeon came back to check on him, the doctor is spending a little more time with him, and he seems to be fine since then. He got a little fussy just before I called at 2am last night, but his nurse this morning says he has been quiet ever since.

There's no change in the schedule for surgery...unless they suspect something that needs immediate attention, it'll still be tomorrow morning. The nurses have free rein to keep him comfortable (his morphine schedule has been increased), and we don't expect any pain he's having to continue past the surgery. He's not actually getting less healthy or more upset in general, he just happened to have a bad night. We still believe that the surgery isn't required right now, but we are definitely looking forward to next week, after he has a couple of days to recover post-operatively.

Surgery Details

The surgery will be approximately what we were expecting when we first heard about the bowel obstruction on Tuesday, but here are some more specifics. After talking to the doctor, he's relatively sure that the issue is something called Ladd's bands, which are bands of tissue attaching the large intestine to the abdominal wall. With diaphragmatic hernia patients, this attachment happens in the wrong place, because the organs form in the wrong location. In their new location, they obstruct the duodenum, which is the first portion of the small intestine, just below the stomach. This causes bile to move up into the stomach and prevents any food from progressing through the digestive system. This can happen with any child that has malrotation, which is almost always present in hernia patients, but is also common (1 in 500) in other children. Malrotation and Ladd's bands are so common that there is a by-the-book solution that almost always fixes the issue. Here's the process:

  1. Make an incision in the abdomen. Unfortunately, the location of Andrew's first scar isn't a good place for this sort of procedure, so he will likely get a new incision down his midline, from just below his solar plexus to just above his navel.
  2. Identify the Ladd's bands and cut through them to detach them from the abdominal wall.
  3. Remove the appendix. Because of the next step, an existing appendix would be misplaced and would confuse any future doctors trying to diagnose appendicitis.
  4. Re-pack the intestines into the abdomen in a manner that prevents similar problems from reoccurring. The small intestine goes on the right side, and the large intestine goes on the left.
  5. Place a gastrostomy tube in the stomach. This is a simple addition (small slice and insert) that will allow us the maximum flexibility when it comes time to attempt feedings again. He can be fed orally, then given any additional nutrition he needs through the G-tube.
  6. Close him up.
Currently, the focus is just on the above tasks, which should sort out his lower digestive system. He still may have reflux issues in the future, for which he might need another surgery called a Nissen fundoplication. This procedure will be considered during Friday's surgery, but it will depend entirely on whether there are anatomical signs that reflux will be an issue. If not, they'd like to give him as much opportunity as possible to feed naturally and not perform any unnecessary operations.

The surgery will take a long time, due to the sheer number of tasks and the complexity of the bowel. We'll get more details from the surgeon on Friday morning and I'll try to post updates whenever I know anything, but we're probably looking at late Friday afternoon before we know how it went.

Jul 18, 2007

Shout Out

Andrew would like to give a shout out to his great-grandma H, who knows what he's going through.

Emotionally Drained

Today was not a fun day.

When we arrived at the hospital, Andrew was awake, alert, and peaceful. He looked very cute and very curious, staring intently at his mobile, then at our faces after we arrived. He held my finger and stared at me for a long time, with a lot of personality in his face. The nurse told us that he had just calmed down after two hours of crying, fussiness, and general distress...blood pressure up, oxygenation down. He was good for a long while, then he got fussy again. Eventually he got into a pattern where he would go nuts every ten minutes or so, attempting to scream, flailing his legs and arms, and turning red. He'd calm down temporarily, then start the whole process over again. For the most part, his numbers were all reacting in a healthy manner...they dropped, but rebounded pretty well when he was done...the nurses also gave him a little more oxygen when he was in the middle of a tantrum.

If this process had happened once or twice, it would have been okay. Unfortunately, it happened many times. They had given him three doses of Ativan and three doses of morphine, though they had mostly weaned him off of both. The drugs didn't seem to be giving him a whole lot of comfort, though eventually the morphine took the edge off. In addition, he vomited a few times, prompting them to readjust his NG tube so they'd get better suction. That worked, but then the tube was full of saliva and bile...these incidents just served to reinforce the fact that he definitely has an intestinal blockage.

With his additional distress, the doctors became a little more concerned. They called the surgeon for a consult, and spent a lot of time with him to make sure nothing was seriously wrong. Fortunately, their examinations didn't suggest that he has an emergent condition, and they are content to wait until the appropriate time for his surgery. After talking to all of them, I felt quite a bit better. Some of the scarier possibilities are very unlikely, Andrew's physical examination showed none of the warning signs (distended belly, low pH, lack of bowel sounds, etc), and he wasn't demonstrating what the surgeon called "surgery pain." Apparently, when there's an obstruction of the bowel that causes a disruption of blood flow, it doesn't matter how much morphine he's had...a push on his tummy would make him jump off the bed in pain. It's obvious that Andrew's belly is causing him a bit of pain, but he's closer to a normal baby with colic than he is to an emergency case.

The surgery is currently scheduled for Friday morning at 8:30. Until then, they will keep a close eye on him for any signs that he is having additional problems. They'll give him additional blood tests (they were down to every eight hours, instead of four), they'll examine his belly repeatedly, and they'll give him as much morphine as he needs to keep him comfortable from any tummyache. If anything looks out of the ordinary, they'll get him immediately to the operating room and get it taken care of....otherwise, Friday morning will be optimal. On Friday, a fully-prepared OR and two senior surgeons will be available for Andrew's operation.

More about the actual surgery later, but rest assured that Andrew is in very good hands, both with the doctors and nurses keeping an eye on him now, and with the surgeons doing the operation on Friday. Obviously we would rather keep scalpels away from him for the rest of his life, but this was a not-unexpected surgery and it will be good to get it out of the way. I am no more nervous for this than I would be for any surgery on my child, and I think it will solve problems rather than causing any further ones. When it's done, I hope Andrew's digestive progress will quickly be on par with his ventilator progress, which has been fabulous. They have paused all his settings in preparation for the surgery, but his numbers would ordinarily be weanable.

Just to Clarify

I just wanted to clarify that we don't know a specific time for the surgery, or whether he'll even need to have it. I'll post another entry as soon as we know for sure.

Doh!

OK, do you want the good news or the bad news? I'm certainly not waiting for poll results, so I'll just start with the good news.

The good news is that Andrew had a great night last night. His gases were good, his saturations were stable even when he was fussy, and they weaned him down to 10 breaths per minute on the vent and 27% oxygen. Those are very minimal settings, and the doctor was seriously considering extubating him either today or tomorrow. The reason she didn't go through with it...that would be the bad news.

The bad news is that they are concerned about his digestive tract. Though the feedings had worked in the past, in the last couple of days they've been completely unsuccessful and resulted in significant residuals. Worse, his vomiting yesterday made them think there may be some new obstruction. This morning they did an upper GI study, where they pour barium into his stomach and follow its progress with a special scope. They found that nothing progressed much past the bottom of the stomach or upper small intestine (duodenum). This result, coupled with bile in his vomit yesterday, leads them to believe that he probably has a kink in his small intestine that probably will need to be fixed surgically. The need for additional surgeries was somewhat expected, but this came upon us somewhat suddenly.

The details. The doctor, the radiologist, and the surgeon are meeting to discuss Andrew's case and move forward on a course of action. There is a very good chance of surgery, and that surgery would probably take place soon, on either Wednesday or Thursday. During the operation, the surgeon would attempt to kill several birds with one stone. First, fix the kink in his intestine. Second, fix any malrotation of his bowels by laying them carefully in place. Third, possibly place a gastric tube while they have the opportunity, as an alternative method for feeding. The full extent of the surgery won't be known until they get inside, as there are a few items that could possibly complicate things (Ladd's bands, intestinal damage, appendix placement, or blood flow issues).

Though we of course want Andrew to have to undergo as few stressful procedures as possible, this may be a necessary treatment and our number one priority is his continuing health. The doctor is confident that he is absolutely stable enough to get through this with no problems, and we have already seen the surgeon's great work. If this will solve most of his digestive problems, then we are fully behind it and looking forward to Andrew's recovery.

And Now, For Something Completely Different

Something on the silly side to lighten up the mood.

Jul 17, 2007

Some Harsh (Potential) Realities

I wrote this "downer" post a couple of days ago. I don't want to go back and edit it, so I'm posting as-is and then will update with today's status.



I've been blogging about Andrew's daily process for so long that I think I may have neglected the bigger picture. When we had a family conference with the doctor and social worker last week, we talked about some of the longer-term issues and timetables. I've also been doing a lot of research about the problems and recovery times that face children with diaphragmatic hernias, and I want to share some of them with you. This is not going to be a rosy picture, but I think preparing ourselves emotionally for some of the challenges he could face is a worthwhile task. If you don't want to listen to me being a downer, then skip this post.

First, let's talk about his time in the hospital. If we hear the phrase "Every baby is different" one more time, I think we may scream....but at the same time, it's absolutely true. As such, they can't really use his current progress to accurately predict when he'll be able to come home or how he'll do with the remaining tasks on his checklist. However, from what we've seen of his progress and what I've heard/read about the process in general, I think a realistic estimate would be between four and seven months (total) in the hospital. There is a (very tiny) chance that it could be sooner, and a (less tiny) chance that it could be longer. CDH (congenital diaphragmatic hernia) patients have been known to spend over a year in the hospital, especially those with cases as severe as Andrew's. His almost total lack of left-side diaphragm and his time on ECMO suggest it won't be a short stay, though he has fortunately shown no signs of any of the common defects that often go hand-in-hand with CDH. He has a healthy heart, healthy kidneys, and no chromosomal abnormalities that they know of...those all increase his likelihood of a quicker recovery. If Andrew is able to come home by Christmas, I'll be happy. If it's by my birthday, I'll be thrilled. If it's by his aunt's wedding, I'll be shocked. Unfortunately, if it's not until D's birthday, I wouldn't be completely surprised.

Going home from a case of CDH is really a checklist-style process. Here are the major points that I've come up with, though this is definitely an unofficial list:
  1. Survive the first few days and stabilize for further care (may require ECMO).
  2. Successful surgery to repair the hernia and reposition his digestive organs.
  3. Successful removal from ECMO with no need for it to return.
  4. Recovery from surgeries (CDH and ECMO).
  5. Weaning from high settings on an oscillating vent to lower settings.
  6. Switching from a high-frequency ventilator to a conventional ventilator.
  7. Weaning to minimal settings on a conventional ventilator (standard oxygen levels, minimal machine-induced breaths)
  8. Weaning from high levels of nitric oxide to lower levels, and eventually to none.
  9. Extubation from the ventilator.
  10. Demonstration of continued stability without advanced life support methods (ventilator).
  11. Successful feedings of small amounts of milk through a nasogastric tube.
  12. Successful feedings of larger amounts using NG tube.
  13. Successful oral feeding of milk through a bottle.
  14. Successful surgeries (if required) to prevent gastric reflux and/or insert a gastric tube for direct feedings.
  15. Recovery from surgery and acclimation to new stomach valve and/or feeding method.
  16. Discharge from hospital.
As you know, Andrew has completed the first several items on the list...six down, ten to go. Unfortunately, I've found that feeding issues often take much more time than the actual CDH recovery period. So even after he is off the ventilator, it could be months before his feedings are sorted out. Fortunately, at that point we will be able to handle him, hold him, and treat him more like a normal child than a fragile, sedated baby in a NICU bed. On the down side, all of you still won't be able to visit, and even our designated visitors can't come in during cold and flu season.

Next, let's talk even longer-term. Andrew had CDH, he was on ECMO, his lungs are underdeveloped and hypertensive, and he will have been in the NICU for quite a while before he comes home. This combination of problems lends itself to some continuing, often life-long issues and side effects. Before I get into them, let me say that ALL of these are just possibilities. It is very possible that he could have NONE of these issues. However, they are common enough that they are worth mentioning...I won't go into the far less common (sometimes more serious) possibilities. I'm also not including anything that could be caused by complications that happen along the way.

The first and most common challenge will be feeding issues. Ninety-five percent of CDH patients have some feeding challenges, and I'm not vain enough to think my child will be an exception. Not only does this prolong the actual hospital stay, it also continues after coming home. He may have a gastric tube, requiring us to feed him by injecting food directly into his stomach. He will likely always have reflux issues, meaning he'll bring food back up more than most, and may potentially need medication as well. Alternatively, he may need surgery to create a valve in his stomach (numbers 14 and 15 above).

Andrew will also probably always have lung issues of one form or another. First, we're dealing with pulmonary hypertension that makes it more difficult to oxygenate blood. His saturations will never match those of a normal child (or even adult), as his nubbin will never completely fill his chest cavity and even the right lung isn't perfectly formed. We may have to take him home with an oxygen tank, giving him additional O2 through the nose. That oxygen may or may not need to be mixed with nitric oxide....if so, that would be an additional tank. We'll probably have to give him breathing treatments, and we'll have to worry every time he decides to get mad at us by holding his breath.

Andrew will be more susceptible to additional respiratory issues than most normal babies. The likelihood of asthma, pneumonia, or RSV (upper respiratory infection) will be both higher and more dangerous for him, as he won't have the reserves necessary to maintain his oxygenation. We'll actually worry about any viruses or infections, including staph infections and other blood-based versions. Allergies are a real possibility too, though I really hope he's not allergic to Willow.

We'll certainly be cautious with Andrew, especially for the first few years, to prevent any of the above respiratory issues. He'll have to stay away from crowds, avoid anyone that's sick, and generally dread cold and flu season. When people come over to visit, a long hand wash will be a requirement...pretend you're on ER and Dr. Kovac just told you to "scrub in." We'll probably buy stock in Purell hand sanitizer.

Next up are potential developmental issues. Any baby that's in the NICU for an extended period of time will likely be significantly behind in developmental milestones. We will go back to the hospital every six months to meet with a developmental specialist, test Andrew's abilities, and discuss his progress. His normal timetable won't be the same as any other kids his age, so we shouldn't expect the standard "walk at one, talk at two" scenarios. Other less obvious milestones also won't happen on schedule, so we'll learn to develop a whole new schedule for him. Generally, kids that are behind in the first couple of years can catch up and be in-line with their ages by the time they're teenagers, or even before. We hope that Andrew's size and genetics will be a positive influence on his physical and mental abilities, and we look forward to him winning the sixth grade spelling bee.

Now it's time for the scary stuff. I feel I have to mention these only because they're somewhat common in CDH patients, especially those that have been 1) without oxygen for any period of time, and 2) on ECMO. Hearing impairment is one possibility. I've read a "success story" where a CDH kid was completely normal after recovery, aside from being deaf. Most deficits are not this severe...mild hearing loss is much more common...and again, this is only a possibility. In one less-than-scientific survey, only 23 of 461 CDH patients had any hearing loss at all. The other scary possibility is cerebral palsy. This generally refers to any motor defect caused by damage to the brain. We don't know of ANY damage to Andrew's brain and there will be additional tests (CAT scan) before he is released. If there were damage, it would likely be minor and non-progressive, meaning that it wouldn't get worse over time. If CP reared its ugly head, the worst I would expect would be leg braces, mild spasms, or something similar. In the same survey I just mentioned, 24 of 461 CDH patients had some form of cerebral palsy.

Sorry to be such a downer, and I realize this post was FAR too long and perhaps too sad, but I wanted to get it out there. Probably the most important part is realizing that he'll be in the hospital for a while...I don't want anyone to expect a huge party in August/September. First, he's not supposed to be around groups. Second, I think a late autumn discharge is definitely more realistic.

Here's Looking at You!

The nurses try to put his hands at his sides, but he likes to sprawl out with his arms spread wide.

This one is worth clicking on to see a larger version. I'm not sure exactly what he's able to comprehend at this point, but his gaze is really piercing.

Looking at mommy. You can see how well his scar is healing when viewed from above.

Breathe

Andrew had a mixed day today. On his ventilator, he did great. He's gotten down to ridiculously low levels in the last week...just amazing progress. He's at twelve breaths per minute, yet is keeping his respiratory rate in the 50's and continuing to have good saturations and good CO2 results. His current respirator will only go down to ten breaths per minute, so he'll soon hit a wall where they'll have to wean him on other settings, switch to a more advanced conventional ventilator, or extubate him. He's still on 10 parts per million of nitric oxide, so there's plenty of room to come down there. On his inhaled oxygen, they had him down to 27 today, only six percent above normal room air. Being able to breathe normal air is of course the eventual goal, so that's a great step forward.

There were two tiny setbacks today, because having all good news would make our brains explode. First, it seems like his fussiness is getting a bit more violent, and how he manages it seems to depend on what he's feeling like at the time. Much of the time we were there, he was alert and happy, with his eyes open and looking around, but with no noticeable concern. However, he had a few freak-outs that lowered his saturations and raised his blood pressure pretty significantly. While it's still great that he manages to recover quickly, they sometimes give him additional oxygen (by turning up the percentage) to help him stay stable. This is the sort of activity that will be much more difficult once he's extubated. So while the numbers above are fabulous, I feel like he needs to show some consistent stability (for a few days), even with anxious episodes, where he doesn't need any additional help from the nurses.

The other setback was digestive. They suspended feedings after last night's failed attempts, and today were simply sticking to the IV fluids/fats. During one of his "episodes," he managed to vomit, even with a tube down his throat. It was obvious from the color that it was from his stomach. The doctors and nurses want to control all fluids going in and out of his stomach using the nasogastric tube, to prevent accidental aspiration (breathing) of acidic stomach juices. Since he can't cough or swallow on his own, he's at higher risk for this issue, which could cause damage to vital lung tissues. If he were at home already, this would be the sort of thing we'd go to the emergency room for. Fortunately, he's already getting better care than any ER I know of, and they quickly suctioned his mouth and solved the problem. Though he was in no immediate danger, a subsequent X-ray didn't show anything wrong, and steps will be taken to insure this doesn't happen again any time soon, it was still termed an "acute episode" and presents just a little more for the doctors to worry about. It may change their feeding strategy moving forward, or make them more likely to think about surgical methods for solving this reflux problem.

When we got to the hospital this afternoon, Andrew's eyes were wide open. When I saw his vent settings, so were mine. It's probably a good thing that the day had some negatives, because otherwise I think I'd be setting myself up for some disappointment. We are preparing ourselves for a possible setback when his current course of steroids is complete, though I hope in general I can continue to report good news.

Jul 16, 2007

Our Family Portrait

This is our first family portrait, but it probably requires some explanation. We bought a Nintendo Wii several months ago, and one of the things you can do is create representations of yourself called Mii's. D and I created our own, then created one for Andrew when she was about 6 months pregnant....we named him "Baby Ryan." You can share your Miis with friends that also have a Wii, which we did with a few people. The other day, while playing Wii Bowling, our friend K noticed that our little family was watching him bowl. A picture of the screen later, and here we are:

Happy Birthday to Everyone

I almost forgot....yesterday was Andrew's one-month birthday. A lot has happened in the last month, including several other birthdays, which we almost completely ignored. I apologize, but rest assured that we were thinking of you on your b-days, and I was simply too rude to call and wish you well.

So here's a shout-out to Andrew's great-grandpa M, his great-grandpa J, his aunt/cousin M, his "aunts" J and K, and his "uncles" A and R. Though I use aunt and uncle in a loose sense, I hope Andrew truly does end up with more "aunts," "uncles," and "cousins" than he knows what to do with.

"Change My Diaper First"

One last thing before I go to bed. I've mentioned several times all the things that upset Andrew, and I certainly can't blame him. Having a tube down your throat and getting poked and prodded all day has to be a nuisance, and I would be worried if he didn't get a little upset. However, Andrew seems to be most bothered by dirty diapers.

The catheter came out weeks ago and his digestive system is still moving enough to produce stool, so he has wet and/or dirty diapers relatively often, especially because of the diuretic. It seems that as soon as he's wet, he immediately starts to get fussy. That anxiety continues (and gains momentum) until his diaper is changed.

When he starts moving around and becoming agitated, the nurses have a tendency to come over and suction his mouth, move him around, etc. As of today, we all collectively realized that the first thing they should always do is check his diaper. If his diaper's wet, there's no point in getting him extra anxious from all the handling. At one point he dirtied his diaper twice within an hour....the nurse did everything she could think of to calm him down, then finally thought to check him down below....a new diaper and everything was good as new. The nurses are going to pass that message along at shift changes, but we're tempted to make a little sign to hang over his bed: "Check My Diaper First."

Week-Long Recap

We have been very impressed by Andrew's progress this week. He's moved from the hi-frequency ventilator, to the combination vent, to the conventional settings, and his numbers have only gotten better. He seems able to keep his oxygen saturation a little higher on these settings, so they've also been able to bring down the oxygen. Since his breathing won't work against the conventional vent, they've removed him from the paralytic and lowered the frequency of his morphine and Ativan doses. His increased motion (and the Lasix) have allowed a lot of his extra fluid to be removed and excreted, so he's looking a lot less bloated than before...no more alien head.

These are all great advances, yet they still don't really capture the progress he has made. From a purely non-statistical, subjective evaluation of the last week, he seems heartier, more active, and more stable than he ever has before. He still gets very upset when anything is done to him, including diaper changes, mouth suctioning, breathing treatments, and head movements. Sometimes, he gets upset just for the heck of it. However, the difference in his response has been like night and day. He still clenches down, tries to cry, turns his face all red, and looks sad...but at some point he stops, and there has usually been very little change in his numbers. During his most active periods, he can still set off some alarms. He can get his mean blood pressure over 75 and he can get his oxygen saturation down to the mid-80's, but neither of those will cause any permanent damage, and he rarely gets bad enough to make anyone concerned. Most importantly, as soon as he quiets down, his numbers go back to normal, his following blood gases turn out fine, and they can continue to wean. In previous weeks, one temper tantrum would throw off his numbers for hours, often freezing his progress.

Even the above paragraph is a bit too scientific. I can't tell you how good it feels to see him awake, opening his eyes, and looking at me. When he gets upset, it's heartbreaking, because no parent wants to see his child cry. But at the same time, I can't help being happy that he's strong enough to cry like a normal baby and still be stable moving forward. Looking into his eyes, I can feel the little person inside him in a way that I haven't experienced to this point...it's a beautiful, beautiful feeling. I know that there will be more setbacks, and that the past week may have been the exception rather than the rule. I'm trying not to get used to progress like this, knowing that every day is different. But at the same time, I can't help but feel like he's turned a corner, and that bringing him home is now a question of time, rather than a possibility.

Keep it down, son

I feel like a lot has changed in the last week or so, and I don't know that I can do it justice this late at night. We had lots of visitors and excitement last week (and more next week), so we may try to relax a bit on Monday. If so, I'll try to write more, since just giving his daily stats won't really cut it.

As for those daily stats, he's doing great. His oxygen is in the 30's...we're trying to get it down to normal air content (21%) eventually, but this is very good progress. It fluctuates as he needs it for breathing treatments, "freak-out" recovery, etc...but it has steadily been going down. He is still on the conventional settings on his new ventilator, and has been for over 30 hours. Remember I said that nurses are a bit superstitious? Well, they still haven't told him that they've moved away the hi-fi vent, just so he doesn't hear that and need it again. His current vent can do some of the hi-frequency oscillation if he needs it, but hopefully they won't ever have to bring back the other machine.

On this new vent, he's down to 18 breaths per minute (bpm). That means even if he doesn't try to breathe at all, the machine will give him 18 breaths. Generally, babies need quite a bit more than that, which means that he has to "breathe above" the vent. When it senses that he's taking a breath on his own, it will give him a shot of air, just like the other machine-induced breaths. He's been able to keep his own respiratory rate in the 50's and 60's, which means he's breathing on his own twice for every one breath the machine gives him. Eventually they'll want to get the machine below 10 (five would be a very nice number) with his numbers all stable...meaning that he'll have to take most of his breaths himself and still keep his oxygen saturation up and his CO2 content down. He got to 18 bpm tonight (from 20) because the CO2 content was great on his last blood gas.

One area in which he has (so far) fallen a bit short is feeding. He did really well for the last day or two, but brought a bunch back up this evening. Here's how his feedings work...skip this paragraph if you have a queasy stomach. They put some volume of milk in a syringe, and hook it up to the nasogastric (NG) tube going down his nose to his stomach. If the chosen volume is 8 cc's, they'll deliver it over two hours, at 4 cc's per hour. Then they wait another hour for him to digest it and pass it through to his lower digestive system. After the third hour, they put an empty syringe on the NG tube and pull it open, creating a vacuum that sucks any remaining milk out of his stomach. We would like to see either no milk, or very little. If they get a little back, they'll often return it to the stomach, so he can continue to digest it (gross, I know). From his afternoon dose of 8 cc's, he had residuals of 6.5. The doctor decided to try something new and told them to return the 6.5, then add another 6 over the next two hours, for a total of 12.5. Unfortunately, when they pulled it out an hour later, they retrieved 18 cc's. If you do the math, it doesn't add up...which means the extra either came from his lower digestive system, or contained extra digestive juices, saliva, etc. This has happened before, and they're not really concerned, but they have stopped the feedings for now to give everything a chance to rest...they'll re-evaluate in the morning.

Jul 15, 2007

A Horse of a Different Color

Today they switched Andrew to a new ventilator that combines the qualities of the hi-fi and the conventional ventilators. It gives pulses just like the high frequency one, then pauses for a normal breath. The machine looks like it was pulled out of a World War II bunker (old and clunky), but it's dependable and apparently pretty useful. It's not quite as efficient as the newer hi-fi vents, so they only use it for children that are stable on low settings. He's weaned quite a bit over the last week, so he definitely qualifies. This new vent gives the nurses the capability to change from one style to the other with the flip of a switch...so they can try out the conventional vent without having to roll over another machine. In fact, he's been on purely conventional ventilation (without the hi-fi portion) since 7pm. His numbers have been good, so let's hope he can stay that way for a while.

He got pretty anxious when we were there earlier today. His blood pressure went up a bit, his oxygen saturation went down a bit, and he looked a little out of sorts. Compared to earlier freak-outs we have seen, this was almost nothing...but I think it may have concerned the nurse. In the end, a changed (disgusting) diaper, a breathing treatment, and a little rest seemed to do him good. An extra dose of Ativan and morphine may have helped as well. By the time they took his next blood gas, his numbers were good enough to wean him. They've already turned the ventilator settings down twice, because his test results have come back positive.

They've continued the feedings with the same frequency and volume, and overall they've been going well. He's had residuals of half his volume a couple of times, and all of it once or twice, but they've now been going with this strategy for a day and a half, and I think a few failed attempts are par for the course. Hopefully they'll keep giving him additional chances to prove himself, instead of stopping the process entirely.

Jul 14, 2007

Friday the Thirteenth

No superstition here....another good day. Andrew's on his back again after two days on his tummy, and still responding well to both the treatments (handling, moving, suctioning) and his various medications. They've weaned the hi-fi vent down to very low levels....the amplitude is at 20 and the pressure is at 12, down from 30 and 16 on Tuesday. His oxygen percentage is a little high, but it's keeping his saturations high as well. They've started to wean the nitric oxide slowly....it's down to 10 from 20.

The feedings have continued, with only a tiny bit of residuals. They have been on breast milk since last night, and have increased the volume a bit. It's still not enough to give him any sort of sustenance....he's dependent on his IV fluids and fat for that...but every feeding that stays down is a good one.

They put him back on another round of steroids, which will hopefully help his lungs develop more quickly. The breathing treatments require that he be taken off the hi-fi vent and hand-bagged while the medicine is added to the oxygen stream. I watched the respiratory therapist go through the whole process yesterday, and I was amazed how well he tolerated it. They always turn up the oxygen temporarily to make sure he's well-saturated, but it was definitely successful, and they were able to turn it right back down.

A couple things on a non-scientific note. On Thursday while I was there, Andrew got a case of the hiccups. I've actually seen him with the hiccups a few times, but this was a long bout...perhaps fifteen or twenty minutes straight. He was pretty well-sedated, but I could still tell that he was confused and a bit annoyed by it. It was far more heartbreaking than I thought it would be, to sit there unable to help....hiccups are hard enough to stop as a healthy adult. I couldn't tell him to hold his breath, I certainly couldn't scare him, and drinking water upside-down would be an acrobatic feat worthy of a SuperBaby. It was a good lesson in being patient with Andrew's quirks; it's something I'll have to work on before he comes home.

On the positive side, I was holding his hand for a while today....he's had a hand free of lines for about a week, and it feels like more of a connection when you can slip your finger into his. Today, I literally had to pry his fingers open to get my finger in his hand. Once there, he squeezed it so tightly that I was shocked. I kept telling him that he was hurting me, but he didn't listen. It made me really confident that his strength and will are still there, even through sedation and paralytics.

Jul 13, 2007

Late One

Yes, another late post...I need to get to bed, so I'll keep this quick. D is doing much better, the fever is almost entirely gone, and it looks like the antibiotics are helping. We'll try and head down to the hospital together tomorrow after she gets a checkup.

Andrew had a good day overall. His oxygen, vent amplitude, and vent pressure are all down, the first time everything has gone down in a few days...it's been down on one, up on another. He's been on his tummy for two days straight, and they've been turning his head and giving him breathing treatments. His edema (extra fluid) is looking much better, and they have switched back to the weaker diuretic. He's done with his course of antibiotics, and none of the cultures taken from his blood or his chest have come back positive.

They started feedings this morning, just a tiny bit (4 cc's in two doses, every three or four hours). They're trying Pedialyte to start with. As of my last call (about an hour ago), he had successfully completed twelve hours of feedings and they were moving over to breast milk on the same dosage and schedule. This small a volume isn't really enough to sustain anything, but hopefully it will teach his stomach and intestines how to start the process.

Jul 12, 2007

What Next?

We spent a lot of time at the hospital today...no, not THAT hospital. In fact, we didn't get to see Andrew at all today. Instead, we spent several hours at the Scripps Encinitas Emergency Room. On Tuesday night, D spiked a fever, so we got a prescription for antibiotics and went to bed. In the morning, the fever had gotten worse instead of better and her doctor was unavailable, so we were advised to go to urgent care. Five hours later, we headed back home with an additional antibiotic prescription, an IV bag of saline and two syringes full of antibiotics in D's bloodstream, and a diagnosis of mastitis. She's already much better, controlling the fever with Tylenol and the rest with antibiotics. Cold compresses, hot compresses, extra pumping....we're doing everything we can to speed the process along. It'll probably be a couple of days until she's back at 100%, but we can go see Andrew as soon as she feels well enough, as she's not contagious.

It was sad that D's illness and our interminable ER wait ruined what would otherwise have been a good day. Andrew spent most of the day (from 9am to 10pm) on a conventional ventilator. Apparently he wasn't quite up to staying that way (his CO2 levels were a little too high in the 80's), but just trying it out again is a sign that the doctor's have regained some confidence in him. He was on his belly for most of the day and tolerated it well. They also turned his head several times...it doesn't sound like a big deal, but head direction indicates which lung is getting the most oxygen, since the ventilator tends to "point" at the far lung. By making him face to the right, it means his nubbin got more air than usual and his right lung less than usual, yet they didn't see any major desaturation. After putting him back on the hi-fi vent this evening, his CO2 levels are coming back down. His settings are where they were before he switched vents, which means he went through all those manipulations without any problems that required fixing.

I'll definitely go down and see him at some point tomorrow, and D will see how she feels. Rest is a very important part of recovery, so she should take it easy for a couple of days. I'll be her (and your) eyes-and-ears at the hospital. Once again, thank you all for following along.

Jul 11, 2007

New Procedure

After Andrew had his hernia surgery, there was a large empty space between his tiny left lung and the new patch on the diaphragm. Over time, this area fills in with fluid. Since the blood cultures they took a few days ago came back negative for any infection, they want to make sure that there's no potential infection in his chest cavity. So today the doctor poked a tiny hole between his ribs with a needle and drew off some of the fluid. If it looked bad, they would've sucked out as much as they could, started him on a more specific antibiotic, and then let it fill back in with clear (healthy) fluid later. Fortunately, the first batch of fluid came out clear and normal-looking, so they just pulled enough for a culture and were done.

The rest of his numbers have looked good all day, and he even tolerated the chest draw without much of a fuss. He's weaned quite a bit on everything today...his pressure and amplitude are down, and his gases have still been fine. They turned up the oxygen for the procedure, but slowly weaned it back down from there. He's behaved really well the last few days...we'll see how long it can continue.

Jul 10, 2007

Fun Stuff

I just talked to Andrew's nurse and she said he's looking wonderful this morning. They just got back the results of a blood gas test and she has to go find the doctor....his results were fabulous and she needs to know what to wean. Apparently his CO2 was in the 40's...if you remember, 50-70 is acceptable, over 70 is bad, and anything in the 50's means he should be weaned. Apparently he wants to move forward.

The doctor also told the nurse to get a weight from him, to which she replied, "You have got to be kidding." Andrew has been so fussy with just a little touching/movement (suctioning, changing diapers, moving sensors), that she was really worried about having to lift him entirely off his bed, move him to a scale, and then move him back when she was done. However, she said he handled it beautifully and didn't cause any problems. Actually, the one difficulty was that he went to the bathroom right before they weighed him....and right after they took his diaper off.

For the weigh-in, they held all his tubes up so that they wouldn't lay on the scale and influence the weight at all. There's still no way to tell how much additional fluid he has (quite a bit), but his weight came out to 4.55 kilograms, which equates to just over 10 pounds. It's only been a little over three weeks, so he's progressing nicely.

Geeky Pictures

I mentioned that I'd be posting an all-science entry for those that are interested in the details of what's flowing in and out of Andrew on a daily basis. Here it is. If you're bored by this sort of thing, skip it and take a look at the pictures of Andrew below.

First, let's start with liquid inputs. The rack below is attached to IV bags (hung above) and various lines on Andrew's arteries (the tubes dangling below). They had to add the top row when they switched to a constant paralytic drip the other day. The "nutrient" IV contains various vitamins and other sustenance. The "fat" IV contains pure lipids to allow him to gain weight while not being fed normal food/milk. The heparin is very diluted, and is on there solely to keep his arterial line flowing well...if it weren't there, blood could clot in the line. The syringe mount is where additional drugs (morphine, Ativan, fentanyl) are added via syringe...the mechanism actually pushes down the plunger at the designated rate.

This is the nitric oxide portion of the ventilator setup. The settings are on the right, in the shaded section, and the three values on the left are measuring the amounts actually entering his ventilator. The left one is the percentage of oxygen. The % of oxygen in the atmosphere is 21%, so the current setting of 34 is providing him extra O2. The maximum is obviously 100%, though it doesn't get that high unless he's seriously desaturating. The nitrogen dioxide value in the middle is a byproduct of nitric oxide and is usually at 0. The third value (20) is the nitric oxide they're giving him, and is supposed to help with pulmonary hypertension. His heart ultrasounds continue to show some hypertension, so this will probably stay pretty high for a while. It is measured in parts per million....the maximum is 40 and the minimum (before removing it entirely) is around 1.

This is the high-frequency ventilator itself. The left number represents the average pressure with which it pushes air into the lungs...we've seen it set anywhere between 13 and 17. The top-right number is the amplitude, which measures how "large" a wave of air is being pushed into his lungs. This has ranged between 28 and 45 in the last couple of weeks. We've never seen them change the other two values (frequency and inspiration percentage) so I'm going to ignore them for now.

Now let's talk about how they check on his progress. First, he's got a big panel with all his major statistics. Down the left side are all the real-time graphs of the values, the right side has the actual numeric values, and the middle has a history of the last thirty minutes, as well as the alarm boundaries. The top value is his heart rate, a simple measure of the beats of his heart....the alarms are set at 100 on the low end and 200 on the high end. Variability is fine, and infants have MUCH higher heart rates than adults. The red line is his blood pressure, and the numbers represent systolic (73), diastolic (41), and the mean (55). The mean can be anywhere between 40 and 70, so his values are great. The purple line is oxygen saturation, measured from a pulse oximeter wrapped around his thumb or fingers. This measures the percentage of oxygenated hemoglobin compared to deoxygenated hemoglobin...basically, the percentage of oxygen the blood is carrying compared to the maximum that it COULD carry. We're looking for something between 95 and 100, though the low 90's is okay. The low alarm is currently set at 87.

The other monitors they watch (in the pic below) are a second pulse oximeter (top) and a TCM (transcutaneous carbon dioxide monitor, bottom). The second pulse oximeter is attached to his foot and measures his pulse and oxygen saturation, both of which are on the monitor above. A difference in the saturation readings between his hand and his foot suggests pulmonary hypertension that is not allowing blood destined for his lower body to be oxygenated....there's really no other reason for the double readings. The TCM is a HIGHLY inaccurate device that gives the nurses a general indication of his carbon dioxide saturation. It has to be calibrated regularly and is still off between 5 and 30 points on almost every reading, when compared to his blood gas results. However, a spiking number on the TCM is often a good first indicator that something is wrong, and gives the nurses a reason to draw blood for an out-of-schedule blood test. We're looking for numbers between 50 and 70 on his blood gases, and preferably on this machine as well.

Good Alarms

We've spent a lot of time in the NICU at this point, and heard a lot of alarms. Alarms from Andrew, alarms from other babies, even the phone and intercom sound like alarms. For each baby, there are also several triggers for alarms....an IV infusion that's finished, a pulse or BP that's too high, an oxygen saturation that's too low, a ventilator that's lost pressure, etc. It's important to learn to differentiate between Andrew's alarms and those of other babies (so we don't worry ourselves), and to differentiate between unimportant alarms (empty IV) and important ones (desaturation). There are some alarms that will make ten nurses, doctors, and respiratory therapists come running (literally). There are others that can be completely ignored. Yet until tonight, we had never run into a happy alarm.

We stopped by for a visit after dinner tonight, and he was still doing pretty well. They had weaned his vent down a bit but brought his oxygen up a bit...basically a wash. However, they had changed the alarm settings so that his oxygen saturation needed to be between 87 and 95. It's been hovering in the low 90's during the last few days, but should be up in the high 90's. If the alarm goes off on the low end, they know they need to turn up the oxygen in the vent. If it's on the high end, they know they can probably wean him a bit. While we were there and interacting with him, his alarm was consistently going off for being too high. His saturation averaged around 97, with short periods of a perfect 100. They didn't want to wean based on those numbers, because they assumed that he was doing well because of our interaction...basically, the two of us being there was making him do a little better. But, they didn't want to reset the alarm boundaries, because the parameters were going to be the same all night. So, we had to listen to his alarm go off for quite a while (turned off in 30-second increments), telling us how great his oxygen saturation was. Definitely a good problem to have.

Post-Bandage Pics

A close-up of Andrew's scar

His eyes were open and alert, and he was relatively calm...an improvement

An overhead shot
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Jul 9, 2007

Well-Behaved

Andrew is being a well-behaved little boy today. His oxygen percentage is down to 34 (from 48) and the ventilator amplitude is down to 30. The surgeon came by and took off both his bandages (neck and chest), and the Steri-Strips went with them. His scar looks good and will be a great conversation piece in 20 years.

They put him on a stronger diuretic on a higher dosage, and they're confident he has enough strength (and nutrients) to prevent an electrolyte imbalance. They really want to get rid of some of the edema. He already looks a bit better...his head is less swollen, though his eyes are still a bit puffy. It's amazing that he looks different every day. Today he's a bit flat-faced (because of the puffy eyes), but it still looks better than the day he resembled a monkey, the day he had an alien cranium, or the day he took after John Goodman. I'll post some pictures later.

I also took some pictures of the various machine displays, so I can explain what things mean to the geekier of my readers. I'll have an all-science post tonight or tomorrow, which most of you can ignore entirely.

All in all, a really good day. D had a talk with him yesterday, and apparently he listened. Maybe he only misbehaves for the nurses? Or maybe he's doped up on enough tranquilizers to stun a horse...one or the other.

Oxygen Percentages and Edible Flowers

I thought I'd break the trend and post an early entry today. We haven't even been down to see Andrew yet, but our first call was pretty good. His oxygen is down from 53 to 48 without a noticeable drop in his saturation. Everything else is stable and unchanged, and his CO2 is within parameters but not weanable.

We're at home getting ready and enjoying a beautiful anniversary bouquet of fruit (yes, I said bouquet) from Andrew's Grandma K. Later tonight, after visiting the hospital, we're headed to the Marine Room in La Jolla for our anniversary dinner.

Other Stuff

A quick non-Andrew post, for those wondering how/what D and I are doing.

D has almost completely recovered from the pregnancy/delivery. Physically, she's doing great and continuing to get even better every day. "Making food" for Andrew is going very well and we have an overflowing freezer, especially since they haven't tried to feed him again in the last few days. It's hard to schedule everything in three hour increments during the day (four hours at night), and it sucks that she has to wake up but doesn't get the payoff of having Andrew in her arms.

I can't say that this ordeal isn't hard on us. We both have good and bad days that are tied a little too closely to Andrew's day-to-day progress. It's a dangerous pattern that we're trying to work on together. D tends to be a little less patient and a little more emotionally volatile (with good reason), but I try to help by offering a pragmatic view of events as they unfold, as well as a longer-term outlook on the entire process.

Day-to-day, we have gotten into a pretty comfortable routine. We go down in the morning, take a break during rounds (2-3:30 on weekdays), and then come back until they kick us out at 6:30 for shift change. It's pretty impractical to have visitors, as the NICU visitor restrictions are pretty rigid, but Andrew's grandparents have come down several times (mostly on weekends). On the weekdays, we keep ourselves busy with friends and/or TV.

D's parents came down this weekend, my parents are down next weekend, and we've got a few things planned for this week. Monday is our two-year wedding anniversary, D's making a quick trip to Orange County on Tuesday, Andrew's great-grandma is coming into town for lunch on Wednesday, and Thursday is an extra-special dinner with our friends.

If anyone has specific questions about Andrew, D and I, or anything else that's going on in our lives, leave a comment or drop me an email. I didn't have a chance to respond to emails this weekend as I had planned, but rest assured we have received (and read) them all.