Aug 31, 2007

Still Going

He's still off for now. When I got back after rounds, he had calmed down and they had taken another gas that was much better. His pH was normal and his CO2 was back to "within parameters" (70).

He still isn't waking up without being upset, but he's able to get at least a little sleep. He goes from zero to sixty in a heartbeat, and any little thing sets him off. A respiratory therapist pushed his nasal prongs in a little bit...inconsolable for five minutes.

He's working a little hard to breathe...if he were a normal baby, he'd be working VERY hard. He'll have to either get used to it and stop crying, or risk being reintubated. He currently requires a LOT of attention and patience...when we left, his (great) day nurse took my place, holding his hand and keeping him calm. Let's hope the night nurse (and all others for the next week) are just as kind and patient.

Six and a half hours so far...


Oh man, this is stressful. They extubated Andrew around noon, and I've spent the last two hours holding his hand, patting the blanket (for the vibration), and doing everything I can to keep him calm. He's been waking up and crying every couple of minutes, and probably with good reason. Putting a baby as big as him on CPAP is difficult, and they've been focused on mechanical issues the entire time.

Most of the issue is because the little nasal prongs are too small for his nose, and it creates a leak. He's supposed to be getting air pressures of 22 (breathing in) and 8 (breathing out). Instead, it's closer to 10 and 6. They don't have bigger prongs or a mask that will work with this ventilator, so they're attempting to make it more efficient. They tried him laying down, they tried him sitting up, they tried putting a blanket under his back to lift his neck. They tried holding the prongs in manually (obviously not a long-term solution), plugging his mouth (part of the leak) with a pacifier tied to a blanket, and even putting a little chin-strap on him to keep his mouth closed.

They've also tried at least four different vent settings. I don't even know what SIMV, CMV, CPAP, and VIVE stand for, but I do know that they don't help a leaky nasal prong. The ventilator alarm goes off once every couple minutes (Leak Detected!), and his normal alarms go off every time his blood pressure spikes. He's gotten three doses of Ativan, one of Methadone, and one of morphine...he's still not happy.

They tried him with a rate (10 breaths per minute) and without a rate...he seems to like it better without. When he gets upset, he fights against the vent, shutting down his airway. They took a blood gas after an hour and a half, which was (very predictably) not great. His oxygen was fantastic (172...the best it's ever been), but his CO2 was high (104) and his pH was low. I don't know how bad they'll let his pH/CO2 get, but probably not a whole lot worse. Fortunately, I feel like the issue is almost entirely mechanical, and not really his fault. If they have to reintubate, we'll need to make sure that they have a better strategy next time.

I've been kicked out for medical rounds (2-3:30), so we'll see how he's doing when I get back. I can't be there 24/7, so hopefully they can keep him relatively calm without my help. Almost the entire time, there were two respiratory therapists, a nurse, an occasional doctor, and I...all in a tiny room. The nurse and RTs seem to think he'll do really well if they can get things figured out...they're happy with how he's recovering from his snits. I think the doctor might have an itchy reintubation finger, so I can't guarantee he'll still be tube-free when I go back in. It's going to be a matter of finding a long-term solution to the leak and his attitude, which I think would improve if he were more comfortable.

This would be the point where we need to sit back, take a deep breath, and let the professionals do their job. I might be able to calm him down, but the doctors, nurses, and Andrew himself will really decide if he can stay off the vent.

Another Missed Post

Sorry if I concerned anyone by not posting, especially this close to Andrew's extubation date, but it was completely unintentional. I had lots of work to do last night, and ended up asleep on the couch....and after I've been asleep, I'm no longer responsible for my actions.

Thursday wasn't quite as eventful, but still went pretty well. There was no spitting up, which is a great improvement, and they've started increasing the feeding volume by 1cc per day. He's now at 7cc per hour...a slow start on his way back up toward 25 per hour.

They unexpectedly put in a new arterial line yesterday. I think they really wanted to have one in during his time off the ventilator, because it will be much easier to monitor his progress. There's still a chance of it falling out, but they've pinned one leg to the bed so he doesn't kick quite as much. If they can keep it in for a few days, that will hopefully give them the confidence they need to leave it out the next time it stops working. They only had to sedate him temporarily, and went right back down on his ventilator settings when it was done.

The current plan is to extubate this morning. I have work for a couple of hours, but I'm trying to be there as much as possible, so I'll drive down during my last call. I plan to spend all day there, for at least the next few days, in order to keep him calm, change his diapers, and generally be on top of any issues that arise. He's still in isolation due to a single bacteria colony from about a week ago, so we have to wear disposable gowns and gloves when we walk into his room. This takes a little while, so it will help if someone (me) is already in the room to calm him until the nurse arrives. With the delay until Friday, Andrew will no longer have his primary nurses (they're off this weekend), so we're also trying to make sure that experienced nurses are on him during these critical few days.

He's been a little grumpy at times recently, but most of the time we're able to keep him calm by sitting next to his bed and holding his hand. This is certainly not an onerous task, so I'm happy to do my dadly duties.

Aug 30, 2007

Eventful Hump Day

Another good day, no thanks to us. I was only able to spend about an hour at the hospital before we had to leave for LA for my grandma's service. During that hour, Andrew slept for about 55 minutes, then woke up just before I left and got upset. He was inconsolable for about ten minutes and the nurse had to keep turning up his oxygen. Even when they got him calm, he was a little grumpy, frowning in his sleep. However, that was about it for bad news....the rest of the day he was great.

In the morning, he took a little field trip to radiology for an upper GI study. They put a special liquid (barium) in his stomach and then do X-rays to figure out how far it can travel through his digestive system. We still haven't heard the results of the study, but he did a great job during the transport. They didn't have to sedate him at fact, he was doing a modified sprint throughout the trip. During a normal sprint, they turn off all the breaths being given to him by the machine (normally he gets 10 per minute). There is still some flow, what they call "pressure support," in order to overcome the difficulty of breathing through a tube, but all the breaths come from him rather than the machine. During his trip, they left the ventilator in his room and just attached his tube to a constant flow of oxygen. He was able to take all his own breaths, and ended up with a completely successful three-hour sprint.

While I was there (and once more later in the day), Andrew spit up some of the barium he had been given in the morning. This liquid is thick and often hard to move from the stomach, so it may have been giving him an upset's possible his grumpiness before I left was due to that discomfort. Later in the day, a doctor and nurse suctioned the remainder out of his stomach, and that seemed to make him happier.

He had a second sprint in the afternoon and is working on his third while I write this. He was well-behaved for the first, and just as happy during this one. They'll take a blood gas later in the morning, in order to see how he's doing today. They may decide to continue with this sprinting strategy (three hours, three times a day) or they may try to challenge him even more (four hours, or four times a day).

He also received his two-month vaccinations a few hours ago. They smear a topical anesthetic onto his thighs, then give him the shots (three of them!) as quickly as possible. Because some kids have an adverse reaction to the vaccines (fever and grumpiness, mostly), the nurses give them Tylenol and watch them closely for a while. Andrew was a champ...he didn't even seem to notice the shots, and hasn't shown any signs of a reaction since. If this continues to be the case, it shouldn't delay his extubation at all. I'll post more details as things progress, and there's always a possibility of the plan changing yet again. Perhaps I'll write a post on the concept, mechanics, and importance of extubation, for those of you who have seen how important it seems (since I mention it in every entry) but don't really get the underlying idea.

Have a nice Thursday!

Aug 28, 2007

Same Doctor, New Plan

I know we've done "New Doctor, New Plan" before, but now we're going with a new plan even with the same doctor. I hesitate to even lay out the new plan, as the odds are good that everything will change yet again, but here's where we are for now....

This morning Andrew had a four hour sprint. Toward the end, he got quite fussy due to a dirty diaper, and though they were able to calm him down, it left him a bit tired...he was working a little harder to breathe, so they decided to start the ventilator breaths up again. He made it three hours and forty-five minutes, but there was apparently still some concern. He's also continued to spit up multiple times per day. There's bile in it, most likely because the GJ-tube is holding open a path for the bile to move up from the small intestine and into the stomach. They haven't been able to increase his feedings past 6cc per hour, and they want to make sure that he doesn't aspirate anything (breathe it into his lungs). He's not responding to medications (Prilosec and Reglan) that are supposed to help with reflux, and there's no end in sight. Everything seems to be moving through correctly, as he's going to the bathroom without a problem, but they want to confirm that there's no physical blockage anywhere in the system.

Between the breathing issues and the feeding issues, here's the new plan:
  • Wednesday- Perform an upper gastrointestinal study, by watching how liquid flows through his digestive tract using a fluoroscope.
  • Wednesday- Give him his two month vaccinations, which were skipped when he actually turned two months old. Some children have reactions to these vaccines, so he'll be given Tylenol (for fever) and watched carefully for two days.
  • Wednesday- Increase the sprints to three times a day, at three hours each time. Perhaps it was the four hour duration that stressed him, so maybe this will help.
  • Thursday- Continue with three sprints.
  • Friday- Extubate.
  • Mid-September- Perform a Nissen fundoplication, creating a one-way valve in the stomach so that reflux will no longer be a problem. The surgeon wants to wait at least two months after the last abdomen surgery.
Hopefully extubation will also cut down on the vomiting, as he will no longer have a tube gagging him all the time. The GI study should also rule out other issues, and perhaps will give them ideas for alternative treatments. The extubation delay until Friday should provide a clearer picture of whether the sprints are working and how he'll do when he comes off the ventilator. It will also allow D and I to travel to LA for my grandma's service on Wednesday night. We planned for D to stay here and keep an eye on Andrew during his extubation, but now we'll both be free.

Unrelated Bad News

Being the bearer of bad news sucks. I feel like I've delivered too much of it recently, and I wish there was something monumentally exciting that I could report in order to partially offset the negatives. Let me at least say that Andrew's progress has been wonderful, D and I are very supportive of one another and have been coping as well as we can, and we couldn't ask for a more caring and kind set of friends, relatives, coworkers, and extended support group.

Andrew's great-grandmother H passed away last night at 7:45. She was my mom's Yia-Yia (greek for grandmother)...and we're all going to miss her very much. She wasn't what you would call a traditional grandma, but still managed to spoil, encourage, and support me in every way possible. She taught me how to play poker, bought me my first Nintendo system, and took me on my first visit to Greece. I was incredibly lucky to have the chance to make that trip with her, where she trekked all over the country without a hint of complaint, introduced me to family and friends that I had never met before, and really gave me a personal connection to a wonderful country. She was incredibly vibrant, sometimes larger-than-life, and lived every moment to the fullest. Until recently, she played cards and saw her friends and family every week, and still participated in a bowling league just a few years ago. She had a huge social network, and was universally loved amongst all who knew her.

The last few months have been very difficult for her and the family. A chronic back injury led to various medical treatments, none of which seemed to help the situation. As pain from the condition grew worse, her mobility suffered, and she was unable to do many of the things she loved most. Throughout the whole ordeal, I never heard her complain for a second....not about the pain, not about the mobility, and not even about the medical procedures. Unfortunately, complications from one of those procedures led to a worsening of her condition; she had a stroke, and couldn't devote the necessary effort to physical therapy and recovery because of the still-unsolved back pain. The last two months in particular have been a delicate balance of trying to resolve the pain without over-medicating...surgical procedures were no longer an option due to her delicate health, and the pain only got worse. Eventually we grew to realize that there was no happy solution, and that effort should be focused on relieving her pain until the inevitable conclusion. Everyone has had a rough few months dealing with the combination of Yia-Yia and Andrew, but my mom has had it particularly rough...not being able to visit Andrew very much, while witnessing all the awful moments of her slow slide. While this outcome is not the one we would ever wish for, nor the one we expected several months ago, relief of her pain was unfortunately the best result for Yia-Yia and everyone else involved.

For me, the saddest part of the whole situation will be that Andrew will never know his great-grandma. She won't be able to teach him poker, or speak Greek to him, or give him a Christmas present wrapped in newspaper and/or grocery bags. She lived a full life and produced a wonderful family, but I regret that Andrew missed out on that personal connection. We will certainly all tell him stories, but we'll never be able to communicate her laugh, her heart, even the smell of her perfume....we can never express how much she meant to us all.

I love you, Yia-Yia.

Too Tired for a Title

I've gotten burned by saying that Andrew had a good day, because it often seems to be followed by a not-so-good one. However, I can't let that stop me from acknowledging the, Andrew had a pretty good day today.

He made it through a three hour sprint this morning, and his capillary gas (which is usually worse than one from an arterial line) actually came back better than the two previous arterial gases. He was taking turns being grumpy and cute, but just seeing him awake and alert makes me happy. He's been responding a bit better to desaturations recently....his oxygen levels can get down into the 80s, or even the 70s, but he's been better at getting them back up on his own, without requiring extra effort (or even extra oxygen) from the nurses. Of course, he still has moments where he drops into the 50s and 60s, and then he needs some assistance, but any improvement is a good one.

He's continuing to spit up small amounts, so they still haven't increased the volume of his feedings. They hope that having the ventilator tube removed will ease the pressure on his internal organs, relieve his gag reflex, and stop the emesis (fancy word for vomiting).

I just called for a check with the night nurse. He did really well on another three hour sprint and had a great gas. He didn't even seem to mind the heel prick that much. Tomorrow they'll move up to four hour sprints....then they're planning for extubation on Wednesday morning.

Aug 27, 2007


Sounds like they aren't going to bother putting a new arterial line in. They're starting a sprint right now (hopefully he's awake enough) and they'll only be taking blood gases twice a day. This decision has its positives and negatives.....

  • No delay on his extubation strategy
  • No arterial line means it will be easier to hold him, which we haven't done in a few weeks
  • Fewer gases mean they take less blood, hopefully foregoing the need for future transfusions
  • One less thing to go wrong and cause delays
  • When they do draw blood, it will be through his heel, which is uncomfortable
  • These draws, called "capillary gases," are less accurate
  • No blood pressure reading means less scientific indication of his status
There's still a good chance that another doctor will come on later in the week and decide he needs a new arterial line, but for now the plan continues unchanged.

A Case of the Mondays

Well, Andrew's arterial line came out this morning. This line, aside from being where they draw blood, is also hooked up to a blood pressure monitor, so they can keep track of his mood and general health. When the BP sensor flatlines on the monitor, that means it's not getting a good signal. In the past few days, it's gone flat several times, but moving his arm, moving the sensor, or letting his muscles relax has always allowed it to recover. This morning they weren't getting a signal, so they tried to fix it physically, and they weren't able to keep it in. So, the doctor whose lines "never budge," who is one of only two doctors that can get arterial lines in the armpit, was apparently unsuccessful this time, leaving us to wonder what will happen when it's put in by less of an expert. It's barely possible to stay in for less than 2.5 days, which is how long this one lasted.

As much as we'd like to get in a really satisfying "I told you so," the situation is far too important to be distracted with that. For now, he's been given a sedative and paralytic so they could mess with the line, and he's back up to full vent settings. They'll have to sedate him again when they put another line in, assuming they are able. Apparently they expect to turn the ventilator settings down much quicker this time, so he might only miss a single sprint. We'll talk to the doctors this afternoon about the plan moving forward.

Good end to the weekend

Andrew had a good day today. His two hour sprint at 10am went perfectly, and he was pretty happy while we were there. More importantly, all necessary lines are sticking where they should be. He spit up a bit while we were there...still no milk involved, so he's doing okay on the feeds.

He was apparently a little grumpy for the nurse tonight and had a gas that wasn't as great as his recent results, but he was still within parameters. They took another gas after a 10pm sprint (another two hours), and his CO2 (and pH) had gotten better. A diaper change solved a later bit of fussiness. He's having a nice calm night since then.

I suspect they will move to three hour sprints at some point tomorrow, and perhaps increase his feeding volume as well. Before they extubate later this week, they'll probably either try four hour sprints or three sprints a day, just to get him as much practice as possible.

Hope you enjoy the picture.

Big Eyes

This pic is from a few days ago, after his GJ-tube was inserted. He was a little puffy due to the sedation, but his rash looks a lot better.

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Aug 26, 2007

Just pretend it's 5 in the morning

I just remembered that I forgot to post last night...sorry. There was no reason behind it, I just never got around to it and then was very tired when I woke up on the couch and headed to bed. Andrew had a pretty good day yesterday, and that continued throughout the night. Every gas has been good, enough to wean him down to 10 breaths per minute, which they consider minimal settings. He had his first sprint last night, which lasted an hour, and he'll have his second this morning, lasting two hours. He's continued to spit up a little bit, and unfortunately there's bile in it because the GJ-tube is holding open the lower portion of the stomach, but there doesn't seem to be much milk in it. That means he's getting the nutrition and only spitting up because he's sensitive to the tube being in his mouth, suctioning, multi-tasking, etc. There are never good reasons for throwing up, but those are certainly better than not tolerating the feeds. We hope that having the tube out will solve the issue.

New doctor, new plan. Instead of being a little more aggressive and extubating on Monday, the new doctor wants to give him a few more days of sprinting and extubate around Thursday. Everyone, including us, thinks this will provide the ideal situation for extubation, and give him the best chance of being successful. However, we have seen several times in the past that delays can come from many angles, and losing another arterial line could set him back several days and delay the plan. We are hopeful that everything will work as intended, but we would be incredibly frustrated if delayed by circumstances beyond Andrew's control. If that happens, we'll have to have a long, hard talk with the doctors about the plan moving forward...we may have to proceed with less-than-ideal circumstances, just so that he has the opportunity to succeed. To quote a massive idiot, "You have to go to war with the army you have, not the army you want."

He had a great night, was fabulous on his sprint, and didn't spit up at all throughout the night. He did spit up this morning, but it was stomach juices and milk. Yesterday he was awake and personable most of the time we were there, and never got grumpy enough to require any significant assistance. They'll be slowly increasing his feeds (he's now at 6 cc per hour) and increasing sprint times (they'll try to get up to four hours at a time), and prepare him for Thursday...Wednesday at the earliest.

Frustration level: Blue, with the potential for red with another delay.

Aug 25, 2007


Well, I feel a lot better after visiting Andrew...he always has that effect on me, as long as he's not really upset. When I got there, he was just coming out of a new round of sedation, as they had just gotten his new arterial line in. It's in his armpit, which last time wasn't a great location, but I think they've done enough to ensure that it'll stay put for a while. They used some sort of "Superglue for skin" to make sure the actual tube stays in place, then wrapped and taped the connector, then added a layer of Tagaderm (a sticky plastic dressing) and a layer of Ioban (a sticky orange antimicrobial dressing).

He slowly came around from the sedation and was a little disoriented, but calm. He had a good gas and then quickly started breathing on his own, so they turned down his ventilator from 30 breaths per minute to 20. Apparently his sedation wasn't quite as deep as it had been for his GJ-tube placement, so he didn't require the same slow wean as last time. After waiting a little while and taking another good gas, they continued to move him down (to 18). They'll proceed with the same strategy tonight, trying to get him down to minimal settings by early tomorrow morning. If everything goes well, they'll start sprinting again ASAP, and continue that through the weekend. The current plan (subject to change, of course) is to extubate on Monday morning.

After spending some time with Andrew and convincing myself that he was as comfortable and happy as possible, I then had a meeting with the doctor and social worker. We talked for quite a while, and she made me feel a bit better about the situation. It's still very important that Andrew shows progress, both on feedings and on his respiration, but I know that everyone has his best interests at heart. They'll continue with feeds at the same rate for a while, to give his digestive tract time to recover from the GJ procedure and hopefully let him relax and calm down with the spit-ups. He had two tiny spit-ups this evening, but with nothing near this morning's volume. Tonight's nurse seems to know how to handle him, and she's already been able to wean to 16 breaths per minute after a good gas.

Frustration level: yellow...much better than this morning.

Aug 24, 2007

Insult to Injury

Not only have they not gotten the arterial line in (they'll try again later), but they also moved him back to the old (tiny) room because another critical patient was coming in. What color is in between orange and red?

Complete Non Sequitur

I'm trying really hard to keep my mind clear and positive, and I have to say that this helped. I know it's long, but it's worth watching until the end...maybe I'm a little punchy, but it just keeps getting funnier as it goes on.


I'll try to keep my annoyance out of this post, but we are at a frustration level of orange.

Everything was going well until about two hours ago, and then Andrew decided to spit up again. Apparently it was quite a bit (four hours worth of feedings) and contained bile. The entire reason we delayed extubation earlier this week was because they said the GJ-tube would keep his food down, and that neither bile nor milk would leak back up in any large quantities. They told us the GJ would also work better than the NJ, which went through his nose, because he would be less likely to gag on the tube. As they were cleaning up his bed, they noticed that his ET tube was loose, which may be why he spit up. Somehow during the process, he also lost his arterial line. On top of it all, his primary nurse got called to another unit for the day, so we're dealing with someone that doesn't know him (or us) as well.

Somehow in the span of two hours, they went from being over halfway to minimal vent settings to having him completely sedated again (to add a new arterial line). He's back up to full support (30 breaths per minute), with a feeding solution that obviously doesn't work and an as-yet-to-be-added arterial line. I feel like we've wasted over a week on solutions that aren't solving anything, all the while getting no closer to getting him off the ventilator. Assuming they don't break anything else in the next couple of days, I suspect the earliest he could be extubated would be Monday or Tuesday.


Andrew had a very good day today. He isn't being challenged by his vent settings (which may be good or bad), so he was pretty relaxed all day and friendly while we were there. His gases have all been good (though not as good as 38.5) and they've continued to wean his ventilator rate. He's back down at 17 breaths per minute (from 30).

They've started his feedings at 5cc per hour and are keeping the volume there for a while. He spit up a bit this morning (and it included some bile), but hopefully that was an isolated incident. He hasn't had any issues since the feedings have started.

It'll probably be Saturday before they try to extubate him again. I'll give updates along the way, but he's making good progress toward being ready.

Aug 23, 2007

A New Record

A normal blood CO2 concentration is 40....Andrew, due to his hernia and underdeveloped lungs, is far from normal, and generally a value between 55 and 75 is "within parameters." Before today, the best he had ever gotten was 44. However, because they're weaning the ventilator so slowly since yesterday's procedure, he's at rates much higher than he has been in the last month, giving him the ability to relax and get really comfortable. Today at 4pm, he hit a CO2 concentration of 38.5, a new record.


Andrew used his good looks and considerable charm to get a room upgrade upon returning to the NICU yesterday. He's still by himself, and in a much larger room with plenty of space for all his equipment (vent, nitric oxide cart, IV rack). We can now use both sides of the bed again, and we won't be squeezed if four people need to be in the room at once.

Let's Try Some Shorter Posts....

Still coming down very slowly, but he's had really good gases all night. They may change how quickly they're weaning him when they write new orders for today....or they may not.

The Procedure

Today Andrew had a procedure to replace his G-tube with a GJ-tube. They wheeled him over to Sharp Hospital, which is next door. There's a tunnel on the lower level that goes between Sharp and Children's, so we took a field trip with his IV stand and nitric oxide cart. During the transport, the anesthesiologist gave him manual breaths so that the ventilator didn't need to go with us...once we arrived, they hooked him up to the ventilator in the procedure room. It was done in the "Interventional Radiology" department using a fluoroscope to get a live image of Andrew's inner abdomen.

The radiologist said that the procedure would take 30-45 minutes. An hour and a half later, I was still in the waiting room, wondering what was going on. When I asked at the desk, they called in to the room and were told that the procedure was just finishing up. The radiologist came out a few minutes later, soaked to the bone in sweat, and said, "Wow, that was really hard." Andrew is absolutely fine and the problem wasn't due to any complications, his anatomy was just a bit difficult to work with. It was hard for the doctor to get the tube through the pyloric sphincter, which is the ring of muscle between the stomach and the small intestine. He wasn't sure exactly why it was so difficult, whether it was a muscle spasm, extra tissue,or just an awkward anatomy...but it just took a little longer than he expected.

When they were done, Andrew was wheeled back over to Childrens' for recovery. He was fully sedated, which means all his ventilator settings were back up....thirty breaths per minute, higher oxygen, etc. As he starts to wake up, he adds his own breaths to the equation, allowing them to turn down the vent. They're going slowly, taking gases every four hours and only weaning a bit each time. As he gets closer to minimal settings, they'll start planning the extubation again....I'm guessing it wouldn't happen before Friday, and it could take as long as Monday.

They'll restart the feedings tomorrow, and hopefully the new tube will do its job. Andrew was continuing to spit up, even on reduced volumes (10cc per hour). They even tried adding some rice flakes to his milk, to add some density, weight, and calories. Nothing seemed to help. Even though most of his spit-ups happened at recognizable and understandable times (after being suctioned, while "stooling," or while getting upset), they were still concerning. We just don't want him to do damage to himself, either through aspiration of milk (going down the wrong pipe) or constant reflux burning his esophagus.

Enough for now....lots of work the next couple of days, plus a lot of stress in preparation for the extubation....time for bed, perhaps.


Yesterday Andrew seemed a lot happier than in the few previous days. He was awake when I arrived, so I said hello, put my finger in his hand so he could hold on, and then had a seat. He drifted in and out of sleep, but he was quite calm throughout. He was kicking his legs quite a bit (think football, not fussy), and he was generally very cute. I sat there for more than two and a half hours and he held my hand the entire time. I had to get up and move around to let the nurse get near him a few times, but he kept a tight grip.

At 6:30pm, they kick everyone out of the NICU for the nurses' shift change. Someone from the front desk makes an announcement over the intercom that all parents/visitors have to leave. I stood up, pulled my finger out of Andrew's hand, and that's when he went nuts. He had been perfectly calm for almost three hours, but it was letting go of my finger that set him off. He started to cry, turned red, arched his back, and dropped his saturations. It wasn't a big deal, and he does the same thing pretty routinely...but it made me feel a little more comfortable that he was calm while I was there.

Aug 22, 2007

Very Short

In the interest of keeping things short, I'm going to bed right now. I have to get back up early, to take a call for work, and I'm tired enough that not much is going to make sense.

He had a much better day today, and I can talk about the exact results in later posts. The important part is the future replacement tomorrow afternoon, followed by an indeterminate recovery period, followed by extubation.

Aug 21, 2007

Not So Fast!

I realize it's only been five hours since my last post, but everything has changed. They've been waiting on a new part to replace his G-tube with a GJ-tube...that's now scheduled to come in tomorrow morning. In order to insert the new tube, they'll have to anesthetize him, which would mean reintubation. Obviously that's something they want to avoid after he's been extubated, so they've delayed the entire process by at least a day.

The plan is now even more volatile than before (if that's possible), but the idea will be to do the tube replacement as soon as they receive it tomorrow, then get him back to normal settings on the ventilator. They usually try to go pretty slowly from full vent support to minimal settings, so the extubation likely won't happen until Thursday at the earliest. Depending on how well it works and whether there are any complications, that could speed up or slow down the process further.

Updates as we hear them....

Mostly Sunny

This will be short, as I'm already going to bed later than I wanted to...I had some work to do. Tomorrow (Tuesday) is extubation day, so I'm trying to spend as much time as I can at the hospital. I don't know if we can make the difference between success and failure, but I think it's important to watch Andrew closely and get on top of any fussiness before it gets out of control.
D has to start work tomorrow, so she won't be able to be there as much as she'd like.

He seemed a bit better today. He had at least one or two periods of waking calm while we were there, and he's spitting up much less frequently now that he's back at 10cc per hour. He's still grumpy most of the time, but we're hoping that has a lot to do with the tube down his throat. If so, then maybe he'll calm down once he's extubated....we'll see.

We talked to the charge nurses about getting some consistent care for the next few days. The same person has him Monday-Wednesday during the day, and the same night nurse has him Monday-Wednesday during the night. On Thursday, his primary nurses are back at work, which will likely help matters even more. The doctors that are on this week are dedicated to making this a successful extubation as well. Everyone will give him the best opportunity to stay off the ventilator as long as possible....hopefully permanently. In the end, though, it's going to be up to Andrew whether he's ready or not.

I expect the next few days to be pretty stressful, so I might not be blogging quite as much. I'll post pictures if I get any tube-free and happy shots, but day-to-day detailed updates pale in comparison to the importance of remaining off the ventilator.

Aug 20, 2007

More of the Same

Andrew's continued to behave similarly to the last few days. He gets a little grumpy for no apparent reason, but he does pretty well on his ventilation, until he decides to clamp down and turn blue. He's still having problems with his feeds, so they've moved him back down to 10cc per hour. They're also going to pause the feeds before they suction him, because that seems to be a cause for spit-up.

He's had an IV put in his foot (for a transfusion) and later removed (because he was banging it against the arterial line in his other foot). His ventilator rate was turned down to 8 breaths per minute, but his oxygen percentage has fluctuated between 29 and 60 percent, depending on his mood. His sprints have been lengthened to two hours, and he's been doing great except when he's upset.

The current plan is to extubate Andrew on Tuesday. It will depend on how his sprints go between now and then, and his current volatility is a little scary, but I think with the right combination of sedatives to keep him calm and good CPAP ventilation, he'll be able to do well.

Aug 19, 2007

Partly Cloudy

Andrew's had a grumpy few days, mostly because of the various things they've been doing to him. Today he was a little calmer and much better with his breathing, but he was still getting upset almost every time he woke up. We can't be sure what's making him a little more volatile, but it's likely because his breathing tube was replaced yesterday. He's also growing up, and bigger/older kids have a harder time with being poked, prodded, and otherwise hooked up to various machines. I can't blame him, but it's always hard to see him unhappy. A lot has gone on, so let's break it into categories:

Feeding: Because he spit up a few times on 11cc per hour, they wanted to put in a GJ-tube, which I mentioned in a post a couple of days ago. This tube would replace the current G-tube, which goes into his stomach, with a longer one that goes into his small intestine. The procedure was to be done at the neighboring hospital, but they didn't have the appropriately sized tube. Instead, they decided to do it locally, and thread a smaller tube through the existing one. They tried it, but it didn't fit correctly; as a substitute, they put one in through his nose (an NJ-tube). After a little while with feedings through this new tube, he continued to spit up, this time with some bile included. So, they gave up on it, pulled it, and are going to order a better tube for early next week. Until then, they've resumed his feeds through the G-tube. After all the digestive trauma, he's still spitting up a bit, but there's no longer any bile.
SIDE NOTE: These tubes are named for where the ends are placed. The G is gastric, for the stomach, the N is nasal, for the nose, and the J is jejunal, for the upper portion of the small intestine. So, an NJ-tube would be naso-jejunal, from his nose to his jejunum.

Vascular: Andrew lost his arterial line again a couple of days ago, and they wanted it to be replaced before he was extubated again. Until it was replaced, they had to take blood from his heel, which of course he didn't like too much. They got another arterial line in his foot last night, so now they can test his blood pain-free.

Respiratory: Yesterday when they were doing the procedures (arterial and feeding tube), they had to anesthetize him first. They turned his oxygen and ventilator rate way up, as he wasn't breathing on his own. After the procedures, it took almost a day to get his rate back down to normal; they have to go slow and make sure he's ready for the drop in ventilation. Over the last 24 hours, he's gone from a rate of 30 to a rate of 10, and his oxygen percentage has dropped from 50% to 30%. He's back at minimal settings and back on his sprints. The sprints are now two hours long, and he's done well on all but one of them. They turned his pressure support back on, which means he has a little help overcoming the difficulty of breathing through a tube, and he's much happier.

The extubation plan is flexible, but it'll probably be early- to mid-week. I think they want to get his feeds back to normal (perhaps with a new GJ-tube), and they want to make sure his sprints are successful. It's important that he show some improvement on this extubation. If he doesn't noticeably improve or stay off entirely, they may give him another shot, but then they'll start talking about tracheotomies and other longer-term solutions. Those aren't discussions we're looking forward to, so hopefully he'll do as well as we know he can.

Last note- They just weighed him again, and he's at 5.42 kilograms, which is 11 pounds, 15 ounces.

Aug 17, 2007

Long Week

It's been a very long week, and today was a very long day. Andrew had a bunch of stuff done (new arterial line, new breathing tube, new feeding tube), much of which required sedation. He was out of it most of the day, and grumpy the rest of the time. He's good now, but his settings are still based upon being half-sedated, so they don't really mean anything at the moment. Fortunately, that means I can cut this post short and go to sleep, since I'm practically falling asleep while typing. Work, the hospital, and late-night blogging have finally caught up to me, and I need at least one good night of sleep before I go back to my old ways.

Andrew's fine and I'll give more details tomorrow, but for now everybody can get some sleep and start a nice weekend. TGIF.

Grumpy, then Sweet

Andrew was a little fussy today, but he calmed down by tonight. I had to work during the day, so I went to visit him at 10pm. He was awake and getting a breathing treatment, happy and content with good oxygen saturation. He had both legs free and both hands free, though there was a sock on his right hand so that he couldn't extubate himself....apparently he tried earlier today. I reached over and put my index finger in his left hand. He grabbed on tight, then reached up with his other sock-covered hand and pulled my hand toward him. He was essentially clutching my hand to his chest and holding on tight...then he immediately fell asleep like that. It may be hard to picture, but it was a really touching moment; it seemed that he only felt comfortable when he had close contact with me.

He's completed his sprints for the day with flying colors....they're up to two hours each time, twice a day, and it seems that he even prefers those to normal time on the vent. Here's the difference: On the vent, he's receiving ten pressurized breaths and unpressurized oxygen each time he tries to breathe in; they've lowered his additional pressure support from 10 to 5 to 0. On the sprint, he's not getting any scheduled breaths, but each breath he takes has some pressure behind it...having that extra pressure makes it more comfortable to breathe through the tube.

Andrew has been continuing his feeds at 11cc per hour for the last day. He threw up a few times...not a huge amount, and they don't think he has another obstruction, but they want to be safe and minimize the number of times he vomits. They are talking about replacing his G-tube with a GJ-tube, which is a little bit longer and reaches down into his small intestine (jejunum). They think that if the tube goes past the bottom of his stomach, they'll have less issues with reflux. We'll see if it works....he's already doing a bit better tonight, but I think they'd like to have the GJ-tube should help when they increase the feeding volume again.

Aug 16, 2007

Andrew Beckham

Lots of posts today...all fluff, no info. Hope you like this video of Andrew trying to play soccer.

Sock Puppets

Today was a long day, good for Andrew but pretty draining for us. His sprints have continued to go well, as has his feeding, and there's really not much else to report. So, to keep you all satiated with an Andrew fix for the day, here are a couple of recent pictures.

No, he's not really this flexible...they just put a sock over his hand so he wouldn't pull out his breathing tube.

Put up your dukes!
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Frozen Dinners

It's a good thing that Andrew has been moved up to 10cc per hour, because we've got plenty of food waiting for him....

The bottom shelf goes all the way least four rows.
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X-Rays with Labels

My explanation of Andrew's x-rays may not have been as clear as it could have been. Just to clear things up, here are the same pictures, but with labels. You'll probably need to click to enlarge them in order to read the text. If you understood everything the first time, feel free to ignore this post.

June 18

June 25

June 28

August 3
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Aug 15, 2007

Flexible Pattern

Just a quick update for tonight. Andrew has continued to do well on his sprints....they're still at 90 minutes. He just finished his midnight sprint and had a great gas afterwards. They've stretched the time between his blood tests to 12 hours, timed to take place after each sprint. His CO2 is at 52, which is was even lower this afternoon, at 46. They're not making any changes to his ventilator settings at the moment, as he's pretty close to as low as you can go. He's at ten breaths per minute and they won't lower that at's already "minimal." He has some pressure support, which means his breaths are recognized and the machine gives him a bit of pressure to overcome the difficulty of the tube. They've already lowered the pressure from 12 to 10 to 8. Between lowering the pressure and extending the sprint times, the next few days should be challenging enough to prepare him for his next extubation.

Andrew's feedings have gone well recently. No spit-up episodes and plenty of poop, so they're raising his feeds by 1cc every nine hours. He's currently getting 8cc per hour, and that will go to 9 in a couple of hours. The eventual goal is to get to 25cc per hour, giving him 75cc every three hours. When that works, they'll lower the time window, giving him 75cc in 2.5 hours, then 2 hours, etc.

More pictures later...for now, have a nice Wednesday.

Aug 14, 2007


Andrew will be two months old tomorrow, so I thought it would be a good opportunity to show everyone just how far he's come. These are x-rays that have been taken over the last two months, along with some commentary. All of them are chest views taken from above, with his left side (the side with the hernia) on the right side of the image and his "good" side on the left side of the image. In an x-ray, fluid and flesh appear white, bone and plastic appear bright white, and air (and well-inflated lungs) appear dark.

June 18, three days after he was born. His chest is almost entirely filled by intestines on the right side and his heart on the left. His bowels have come up through the missing diaphragm and pushed his heart all the way to the chest wall. The only portion of his right lung that is visibly inflated is the bottom left corner....his heart is impeding the rest. The plastic on the left is his chest tube, draining air from around his lung after his pneumothorax. The plastic tubes in the upper left are from the ECMO machine and have been threaded down into his heart. On the right, it's mostly intestines, possibly with some liver and's mostly an indistinguishable white glob. On the upper right of his chest cavity, you can see a tiny area that's a bit darker...that's his tiny left lung. The plastic/metal on the right is a temperature probe that was under his armpit.

June 25, after his diaphragm surgery. On the left, his heart has now moved over a tiny bit, so there is a sliver of lung available in the upper left corner. On the right, from top-down, are his lung (the streaky white part), empty space where his intestines were, and his Gore-Tex patch. Moving the intestines allowed the lung to expand a bit, but it's still only about 30% of his chest cavity. The patch on his diaphragm is raised (compared to the other side) because the surgeon put in extra so it would have room to stretch out. It's domed upward, and will flatten out as Andrew grows.

June 28, after the empty space had filled in. On the left, his heart has moved over more, and much more of his right lung is visible. On the right, fluid has filled in the portion of chest cavity not occupied by lung...this is a normal process, and the fluid does not impede on his lung at all. The ECMO tubes are gone, though you can faintly see his ventilator tube. The bright plastic circles are stickers on his skin, holders for his CO2 monitor.

August 3, one of the more recent views we have. In just over a month, he's made incredible progress. His chest tube is gone, his heart has moved over significantly (it's supposed to be very close to the center), and his right lung is much more visible. More importantly, his left lung is also quite inflated, and takes up a large portion of his chest cavity (perhaps 60-70%). If you compare this picture to the first one above, it makes quite an impression. We're very proud of his progress (as are the doctors) and we hope it continues at the same rate.

If you can't see something or have any questions, feel free to post a comment. I can explain further, or post another picture with appropriate labels.
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Three More

Here are a few more pictures where the smile may be more obvious:

Just ignore the facial cream.

Get that tongue into it!

Lots of gear...even with a private room, it fills up quick.
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Say Cheese!

This is another cop-out post, as I have a ton of work to do tonight and tomorrow. I figured I could get away with posting a little less (again) if I added a nice picture. Here's one of Andrew smiling; at this point he's done it enough that I can guarantee it's an actual smile and not just gas.

He still has some cream on his face to take care of his rash...that's the white stuff on his cheeks. The dermatologists came by today to identify it; they're not sure if it's "infant acne" or a yeast infection, but they're not worried about either. They took a swab from his cheek and will run some tests to be sure.

He's been doing wonderfully on his sprints (and in general). He's been awake every time we've visited, kicking his legs and squirming around in a not-unhappy way. His upper body is swaddled so that he doesn't try to pull his tube out, but he seems comfortable and doesn't really mind being covered up. He had visitors this weekend (Grandpa D and Yia-Yia D) and ended up smiling at all of us. As of tonight, he's up to 5cc per hour on his feedings and hasn't spit up since yesterday. His sprints are up to 90 minutes...on his midnight sprint, he was asleep, then awake and fussy (dirty diaper), then asleep again, all without any issues. His gases were great and the nurse (who also had him on Thursday, after reintubation) said he's improved quite a bit since then. Everyone is happy with his progress.

I promise I'll get to his X-rays later this week; for now, click on the picture above and watch him smile at you.
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Aug 13, 2007

Doing Well

Another really nice day beside Andrew's bed. Aside from spitting up twice, he had a great day. His sprints have been increased to an hour and a half and he's tolerating them well...he's been awake and alert through the last couple and had great test results afterwards. He's been smiling and yawning more often, which is darn cute...unfortunately, he's still covered in white cream to counteract the rash on his face. It's already looking much better, but the cream doesn't make for the best pictures.

As for the spitting up, they're still not sure why he's doing it. They've gotten several belly X-rays without seeing anything alarming, so they're pretty sure there's not a major blockage. It often seems to happen while he's trying to go to the bathroom, so perhaps he's just not very good at multitasking. I think they'll wait a few more days before they start to become concerned, and may put him on an additional medication to fight reflux. Alternatively, he could figure it out on his own. More pictures in the next few days, but I've been busy setting up a new computer and haven't had a whole lot of time to pick out pics or post exciting entries...sorry.

Aug 12, 2007


I don't have a whole lot of new information, so I thought I'd pad this entry with a picture. He had a pretty good day today, except for the little rash he has on his face...that's the reason for the cream on his face. Hopefully it will clear up by Monday or Tuesday. He did well at his sprint this afternoon and has had some great gas results. He's at minimal ventilator settings still, and has been smiling at us every now and then.

He spit up a couple of times today, so they stopped and started on his feeds. It's hard to tell exactly what's going on, but it's probably a combination of getting upset, not being used to so much food, gagging on the tube, and not being able to vent extra air. I think they're going to continue with the same strategy for now, and hopefully have a better outcome over the next few days.

Like I said...not much to report. I got a CD with all of Andrew's old X-rays, so I'll post again this weekend with some of those. Have a nice Sunday!

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Aug 11, 2007

Forward and Back

Andrew had a great morning, and was already at minimal ventilator settings when we arrived. He was getting twelve breaths per minute at 29% oxygen, and they had even increased his feedings to 4cc per hour. He was resting comfortably and saturating well; when awake, he was smiling and looking around. He's gained some weight, and is now at 5.2kg (11 pounds, 7 ounces); he's also 22 3/4 inches long. The only minor annoyance today was a tiny bit of baby acne...he has a tiny rash (complete with pimples) where the CPAP tubes were rubbing on his face, just below his eyes. They didn't want to put him on anything for it (like topical hydrocortisone) because he's already on so much...but it wasn't a big deal at all.

Then, about twenty minutes before we got kicked out for shift change at 6:30pm, I noticed that there was some water in his vent tube. It wasn't going down his throat, but was collecting in the larger tubes next to his head. The nurse was in the middle of getting some new lines ready (they have to replace the plastic tubing on most of his IVs daily) but said she would take care of it when she was done. Apparently there was more water than either of us knew, because as soon as she went over to switch the IV tubing and empty his vent tubes, the water made it up the smaller tube and into Andrew's mouth.

I don't know how much actual water made it in, though I don't think it was an extremely large amount. However, it was just enough to cause some other problems. First, it blocked his breathing tube so he started to desaturate a bit. Then it made him cough, which caused him to bear down...he may have also been trying to go to the bathroom at the same time. The nurse suctioned him through the tube, trying to get some of the water out. We can only guess at exactly what happened next, but we think some combination of coughing, clamping down, being suctioned, and not being able to breathe well stimulated caused him to "vagal himself." I had heard this phrase bantered about the NICU before, but I had always heard "that kid bageled himself," which didn't mean a whole lot to me. In reality, it refers to an unhealthy stimulation (pinch, tweak) of the vagus nerve, which transmits between the brain and several important organs (lungs, stomach, heart, etc). This stimulation caused him to drop his heart rate, lower his saturation, and vomit...all at the same time.

It was a scary few minutes, but he was quickly under control. His heart rate came back up on its own before it got low enough that CPR had to be involved, and the process was extended because his pulse oximeter (measuring his oxygen saturation) couldn't get a signal. Even though his color was normal again (he showed a hint of blue for a second), they gave him manual breaths ("bagged him"), suctioned him again (carefully), and propped him up on his side in case he vomited again. He was stable before we had to leave, and has only gotten better since, but it wasn't a great last impression on our way out the door.

For now, they've canceled the sprint they had just planned for tonight and postponed his feedings until tomorrow. Assuming he has a calm night (and there's NO reason to think that he wouldn't), they'll re-evaluate in the morning and probably restart everything. His numbers are already back down to where they were this morning, so it's just a matter of getting his food turned back on and starting the sprints. I don't think this is a major setback....just another indication of how fragile he is, how important breathing is for all of us, and how hard it is to breathe underwater.

Aug 10, 2007

Young Puppy, New Tricks

After re-intubation, they always turn up Andrew's settings on the vent, mostly to recover from whatever episode caused the failure and let him relax for a few days. He came off last night at 30 breaths per minute and high oxygen content...after only a day, he's at 16 breaths per minute and 29% oxygen. He definitely seems to like the ventilator, perhaps a little too much, and he's very comfortable as-is.

We still have to have a long chat with one of the doctors about his next steps, but all his gases are looking good and he's in no current danger....just the opposite. They've increased his feeds to 3cc per hour, and though he spit up a couple of times today, the nurse said it was mainly mucous, saliva, and other secretions that he needed to get up.

Being off the vent for two and a half days gave Andrew the opportunity to test out his unencumbered mouth and learn some new tricks. In the last three days he learned to yawn, to cough, and to smile...all of which are incredibly cute. He's still able to do them with the tube in, so he's continuing to demonstrate his new tricks.

Aug 9, 2007

Stop the Clock

I hope this doesn't ruin anyone's Thursday, but Andrew was intubated again just after midnight. He's fine now and resting comfortably on the ventilator. We know he likes it, so we have no worries about his stability tonight...everyone should rest easy.

They're still not sure exactly what happened, but the problem came down to CO2 (yet again). Earlier in the evening they tried pointing his head the other direction (toward his right shoulder), which he didn't seem to like very much. They turned it back to his left around 10:30pm. Around 11, they noticed he was breathing a bit harder than usual. They weren't worried, but they gave him his methadone dose early, hoping to calm him down. He was relaxing peacefully until his midnight gas, which came back with a skyrocketing CO2 (in the 140's) and a low pH (6.99). Those numbers, without any visible signs of distress, were bad enough that they needed to reintubate. They aren't concerned about any permanent damage, and he wasn't showing any signs of having problems in other areas. A chest X-ray showed his lungs to be the same as yesterday (looking good), there are no signs of infection, and his oxygenation is perfectly normal.

After half an hour back on the ventilator, his numbers were much closer to normal. After an hour and a half, they were better than they've been in quite a while. His pH is now 7.41 and his CO2 is 62. His nurse said that he's been awake and alert ever since they reintubated him, but not fussy at all and looking very relaxed. In the next couple of days, we'll try to figure out what happened and talk to the doctors about the next steps. I'm guessing they'll keep him on the vent a little bit longer this time, and focus on extended-duration sprints. When he's shown that he can tolerate long sprints (perhaps two sprints of three hours per 24 hour period), they'll try him again. Hopefully they'll be able to focus on his feedings while they wait, as his feedings have been going really well. He's still on minimal volumes (2cc per hour), but he hasn't spit up in over a week and his bowels have been working well...he's had plenty of dirty diapers to prove it.

I don't want anyone to worry unnecessarily, just because he's back on the vent. His bad numbers were temporary, he's quite content with the vent, and he is in no pain or danger of getting worse. It's a setback, but we'll learn from it and approach things from a different direction the next time. On the bright side, he was tube-free for 59 hours this time...nine hours more than last time. It doesn't seem like much, but every minute off the vent is a chance for his body to get used to breathing on its own, and one step closer to full-time extubation.

Fashion Faux Pas

Here he is in all his CPAP gear. One pink sock, a blue hat, a dangling syringe, and headgear that would make a teenage orthodontic patient blush with embarrassment...perhaps he just didn't like their fashion choices?
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Aug 8, 2007

Recipe for Success

Andrew's still going on the CPAP, managing to keep all his numbers under control. The main reason he's done so well is because he's staying calm, which is mostly due to a slightly higher dose of Ativan. By keeping him calm, he doesn't spike his CO2 quite as high, which would get him into a vicious cycle from which he couldn't quite recover without reintubation. As it is, a little extra aggravation can really upset the balance...while his nurse was at lunch today, another nurse flipped him over onto his back, making him work quite a bit harder and throwing off his numbers for an hour. It's a precarious line, but so far he's walking it well. They're giving him enough medication to stay calm without knocking him out; he's still able to be awake and alert, enjoying his mobile and not crying.

I just called, and all his gases were well within normal levels. The next step, assuming he continues to do well on CPAP, is to wean the CPAP settings a bit. He's actually getting twelve breaths per minute through the prongs in his nose, and those breaths are at a specific pressure. If his gases are good, they can lower both the number of breaths per minute and the pressure of those breaths. Eventually, they would get down to minimal CPAP, which would be a constant flow at a pressure of 6, without any breaths given by the machine. That process may take a week or more, at which time they could try again on the nasal cannula without any pressure.

We're still within the two day window that he was able to remain extubated last time, but it seems as if they've figured out how to help him deal with the situation a little better. Keeping him off the vent will require continued calm and keeping him from getting tired out. To that end, we are trying to make sure he has consistent nursing over the next several days, with nurses that understand his special needs and won't do anything to upset him unnecessarily.

Aug 7, 2007

The Latest

Andrew is still on the CPAP, and though he was quite unhappy earlier this morning, his last gas came back within parameters. His CO2 was reading at 120 on the monitor, which made them worry a bit...then the blood test showed a value of 69. Even before extubation, 50-70 was what they were expecting, and they'll likely be even more lenient now that he's off the ventilator.

The trick seems to be keeping him calm, so D just headed down to see if she can help. I have some work to do, and then I'll join her.

Postponement Over

I hesitate to post anything because Andrew's situation is changing on an hour-by-hour basis, but I wanted to get something posted before I go to bed.

Andrew was extubated around 1:30pm today. For an hour or two, things went really well. They took a blood gas test after an hour off the ventilator and his CO2 was great. Just like last time, he got upset whenever he woke up, but he was able to recover quickly once he fell asleep. Over time, he had some issues with the secretions in his mouth and throat. Everywhere the tube had been in his upper respiratory system, he was now congested, requiring frequent suctioning. When he wasn't suctioned, he would start to wheeze and choke. Of course, every time his mouth was cleaned out, he got upset. His nurse finally found the sweet involved sitting at his bedside and suctioning his mouth every five minutes...literally. Apparently he likes being decongested even more than he hates the suction tube. He's always needed attention, but never quite this much.

After the nurses' shift change, he behaved for a few hours. He was generally calm (asleep) and didn't need to be suctioned quite as often. I think there's a good chance most of his congestion had been coughed up or sucked out. However, his CO2 continued to spike every time he got upset, which was every time he woke up. Though his CO2 would come back down, eventually it caught up with him. We got a call at 11:30pm that he had been breathing particularly heavy, requiring a new blood gas measurement. His pH was far lower (more acidic) than it should be, and they were getting to the point where something had to be done. They said they were going to try a different ventilation method called CPAP, which provides constant pressure through the nose and doesn't require a new tube. They tried it the last time he was extubated, and it didn't help enough to prevent re-intubation. The doctor we spoke with (and his nurse) weren't optimistic about his chances of remaining off the ventilator...they were going to give him an hour, then take another blood sample, then make a decision.

I called after two hours, expecting Andrew to be back on the vent. Instead, he was on CPAP, awake, and resting. His recovery had been so good that they hadn't even done the test as scheduled. It didn't look like he was breathing quite as hard, and he seemed more comfortable on the whole. They postponed his next gas to 5am, hoping that would give his body more time to compensate for the low pH. If he got too upset, they planned to put a little mask over his face to give him extra oxygen, then test his blood again.

His 5am gas went well, and for now (I can only speak for hours at a time, if not less) he's stable and happy. His pH came up from 7.01 (very low) to 7.33, which is right where they want it. His CO2 was also good. On the non-medical side, the nurse said he was awake and calm for half an hour earlier, which means he may be starting to calm down. I think the key to keeping him off the ventilator long-term will be having some periods of calm alertness. If he can stop getting upset every time he opens his eyes, he can stop the cycle of having to recover from bad numbers. Once the cycle is broken, hopefully he'll improve.

Everything is still very volatile at this point...when we call in the morning, the situation could be entirely different in one of several different ways. Not many of them will surprise me, so I'm going to bed with an open mind and a realistic attitude. Though we of course always hope for the best possible outcome, this is still going to be a long, arduous journey...if we hit a speed bump tomorrow, we'll keep on truckin'. On the positive side, I almost entitled this post "NOT Fun While It Lasted." At least he's made it past twelve hours, which we feared earlier tonight.

Aug 6, 2007

Saturday Fun

Happy much?

Good eye contact.

Quite a few tubes have to be dealt with every time we hold him.

Totally worth the hassle.
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Aug 5, 2007

And Again

Andrew's extubation has been postponed again, to either Monday or Tuesday. The reasons were less clear this time, but mainly I think they want to give him a chance to rest after going through the arterial line trauma yesterday. I mentioned the base excess value in the last post...even on lower settings, that number went down...oh well. There's certainly no danger inherent to a low base content, it just may not provide as much of a reserve if he has acidity issues after extubation.

They've continued with twice-a-day sprints, and he's passed them all with flying colors. He stayed at 100% saturation through most of them, and slept quite a bit. He's still on twelve breaths per minute for the other 22 hours of the day, and doing well as long as he isn't too fussy. When he is, turning up his oxygen temporarily is usually enough to keep him from desaturating.

Andrew was pretty boring today, sleeping most of the time I was there. He was all bundled up to prevent him from pulling his own tube out...apparently he was grabbing at his tubes and pulling this morning. He likes being swaddled and falls asleep pretty quickly.

The one new complication for today is that one of his cultures came back positive. They took the entire vacuum container, which collects everything they've suctioned out of his tube in the last few days, and sent it off for a was about a cup of liquid. Out of that entire container, there was one nasty bacterium. It's a bacteria that doesn't affect adults, but can be dangerous to immuno-compromised or lung-diseased children. They are not at all worried about Andrew, as it was only one cell and he is showing no signs of infection or lung issues. However, protocol says that they have to put him in isolation, which means we have to put on gowns and gloves before touching him. It's not a big deal...just one more hoop to jump through. They've also put him on a new antibiotic, Bactrim, which should clear up any remaining bacteria.

Hopefully I'll be able to provide an extubation story one of these days. I think the last day of rest was probably pretty helpful for him, but I'm ready for them to give him an opportunity to breathe on his own again.

Postponed Again

So much can happen in a day at the NICU. For instance, today:
  1. They lost the arterial line in his arm.
  2. We were both able to hold him again, this time without him vomiting on me.
  3. They had to change the dressing on his PICC line twice, once because of a kink in the line.
  4. They eventually got a new arterial line placed in his foot.
  5. They upped his feeding from 1cc to 2cc per hour.
  6. They switched his Ativan from IV drip to an oral form.
  7. He successfully passed a sprint this evening.
  8. They postponed his extubation yet again, to either Sunday or Monday.
  9. He had a period of extreme alertness and activity, where he waved his arms and legs without any desaturation.
  10. He had two moments of desaturation without any recognizable reason, other than getting upset.
To explain why they've postponed the extubation, let me give you a little (boring) medical background. The number they've been most concerned about is the CO2 content in his blood. CO2 is meant to be moved back into the blood (from the muscles), carted to the lungs, and exhaled; when this doesn't happen and the blood concentration gets too high, his blood pH drops and it becomes a bit acidic. Acidic blood can cause problems with the body...when the body is a bit stressed, it creates what they call "base excess," extra alkaline substances that counterbalance any acidity in the blood. Yesterday: They were trying to place an arterial line --> That required painkillers and a paralytic --> That required extra support from the ventilator --> That told his body that he didn't have to worry about acidity --> That lowered his base excess value, which means he has less reserves with which to combat CO2 problems. In order to let it build back up, they want him to spend another day at lower settings (and sprinting) so his body will prepare itself. Then, they can extubate.

Andrew was all over the place today, from relaxing comfortably in our arms to getting upset and desaturating over nothing at all. He's doing really well when he's calm, but having problems when anxious, so it's difficult to predict how he'll do when they extubate him. However, it is good that they were able to get a new arterial line placed, so they can get blood gases whenever necessary and keep a close eye on him during the extubation period. That will save them from re-intubating just because he looks a bit distressed. I can't predict how he'll do off the vent, but I can't say that I have the highest hopes...we might have to settle for some quality time and gear ourselves up for the next attempt. I certainly hope I'm wrong, but too much has happened this week for me to be completely optimistic.

Aug 4, 2007


Well, today didn't go quite as expected. Andrew did great in last night's sprint, and they were prepared to extubate this afternoon. This morning, however, they lost his arterial line...a tiny catheter threaded up an artery in his arm. It's from this line that they routinely draw blood and continually check blood pressure. Losing the line (removing it) meant that they have to prick his heel for each blood draw...something we weren't looking forward to.

They tried to put another line in, but had problems with the insertion. First, they had to give him painkillers and paralytics to sedate him and keep him still; then they had to find a spot that hasn't been pricked yet. They tried his foot, but weren't able to get the line placed....the whole process took over an hour. When they were done, they not only had failed the procedure, but he was also knocked out and needed his ventilator rate moved up to 26 to breathe through the paralytic. They decided to postpone extubation until Saturday.

As of a few minutes ago, they were able to put a new arterial line in his arm, near his armpit. The placement is somewhat precarious, as his blood pressure measurement flatlines every time he moves his arm, but it's stable enough to draw blood for gases. His last two have been pretty good and they've been able to wean him back down to 20 breaths per minute. He's resting comfortably after being (understandably) upset most of the day. The plan is now to extubate him in the morning and keep a close eye on him for the rest of the day. That will be made easier by his new arterial line, and we hope he responds well to ditching the tube. We aren't overly optimistic, especially with the failed sprints and IV issues of the last few days, but every day he is able to remain off the ventilator is a good day.

Aug 3, 2007

In Your Eyes

Tomorrow and Saturday will probably have longer medical updates, as Andrew is scheduled to be extubated around 1pm on Friday. For now, everything is going pretty well. He only lasted fifteen minutes on his sprint this afternoon, but handled his midnight sprint with no problems at all. Though his behavior on the sprints won't necessarily correlate with his tolerance of being extubated, we hope that he at least gains some additional muscle to help out during his unassisted breathing.

Feedings have continued at the same rate (1cc/hour) and have been successful so far. He seems to like the new 'drip' method. They plan to stay at this dosage until he's either stable off the ventilator (good) or re-intubated (less good), at which point they'll focus on his digestion.

Today he spent the first twenty minutes of our visit staring into my eyes. He has the most expressive eyes I've ever seen on a baby, and watching him makes time stand still. I wouldn't normally brag about this...everyone thinks their baby is extra cute and smart...but every nurse he's ever had has said the same thing. His eyes are wise beyond their years (weeks?) and he has a well-defined personality. He's easily the most popular baby in the unit, and constantly has doctors and nurses coming by and saying hello to him (and us). I'm sure they're partly happy to see him and partly amazed that he survived...having such awesome parents doesn't hurt either.

Aug 2, 2007

Cautious Thumbs Up

I don't want to post anything too upbeat, considering the sharp turnaround he made yesterday, but today was a little better.

They've restarted the feedings using a different method, where they slowly drip milk into his stomach from an open syringe. This allows the milk to be processed as the stomach is ready for it...if he has any reflux or clamps down, it will simply move back up the tube into the syringe instead of coming up as vomit. So far he has successfully taken everything they've given, though he's still on miniscule (1cc/hour) doses.

He had another respiratory sprint this afternoon, during which he again got upset and spiked his CO2. He calmed down relatively quickly, but they still aren't very happy with his response. They're looking at other sprint methods to try, as well as causes for his misbehavior on this method. He shows no signs of infection, lung collapse, or any of the other possible physical setbacks; on the contrary, his lung X-rays have looked fantastic, with his left lung already noticeably larger. In the end, it may just come down to the fact that it's difficult to breathe through a straw (his ET tube). We tested the scenario at lunch by trying to breathe through our straws. Breathing in was difficult but doable...the really hard part seems to be breathing out. Exhalation is supposed to be a passive process, where gravity and lack of flexing muscle allows the lungs to deflate and push air out...if that process is being impaired by the tiny airway, it could be hard for him to exhale the CO2...his precise problem.

Just to give him another opportunity, they did another sprint at midnight tonight. He did fine for 50 minutes, then got upset when he needed his mouth to be suctioned...saliva and other mucus tends to build up quickly. The stress of suctioning caused his CO2 to spike just a bit, though not as bad as this afternoon. He quickly got it under control and ended up going 70 minutes on the sprint. A good result, and hopefully good exercise for his respiratory muscles.

At the moment, the plan is to let him wean back down on the ventilator tomorrow, then perhaps extubate again on Friday. I'm not sure whether they'll continue the sprints in the interim. We're also not sure what the feeding plan is, though I suspect they may increase his dosage a tiny bit at morning rounds. Slow and steady wins the race, so any progress is good progress.

Aug 1, 2007

Andrew and Mommy Video

If you liked the pictures, hopefully you'll enjoy the video:

New Scar

Something I forgot to mention earlier. Andrew moved to a new bed today...he has his own private room, which should be good for keeping him calm. There's a little less room to move around and it gets pretty cramped with both of us and a nurse, but it's an interesting change of scenery.

Since that piece of information isn't worth its own post, here's a bonus picture of Andrew's new scar. You'll have to click on it to make it bigger and see any detail, but it looks great. A day of airing out since they took the bandages off has made it look even better.