Tag Archives: ventilator

the eric update – day 39: improving. or not, depending on your perspective. and poundcake!

day 39: pneumonia

in the new world that kris and i live in, the world where things can go from good to horribly bad in three hours and we’re constantly trying to come up with new and innovative strategies to prevent us from turning into the weak-willed people with the small brains who run shrieking into the burning wreckage, it still would have been impossible to predict ahead of time exactly how we’d react to a 6 a.m. nicu phone call that resulted in us discovering that eric had been diagnosed with pneumonia, mere six hours after being told that his clinical picture was improving.

instead of shrieking, we found ourselves confusedly attempting to discern the implications of the cruel laws that we apparently must learn to abide by in our new world. “but you said he was improving?” kris queried. “oh, he is!” the caller stated, perhaps a bit too emphatically. i pondered what we should prepare ourselves for if he really starts improving. slowly, we discovered that, occasionally, the progression of pneumonia is such that you really can start improving before you ever get diagnosed as having the condition. in other words, the classic hazy x-rays which conclusively indicate pneumonia can appear after you’ve already started to gain ground on the bugs that cause the effect. so he was improving, in terms of his blood count differentials and other immunse system indicators, but our mistake was in believing that by using the word “improving” the staff really meant that eric had escaped getting another diagnosis put on his permanent record. apparently we were wrong.

day 39: resting despite pneumonia

getting the pneumonia diagnosis is quite normal for a micropreemie, as nurse donna’s unscientific estimate was that 90% of babies born prior to 28 weeks get the condition ( incidentally, i suspect that a micropreemie parent can’t not begin to hate to hear the various trials and tribulations that their child must suffer through described as “normal”. ), and 50% of children born so soon will develop pneumonia more than once during their stays at the nicu. since eric’s lung x-rays indicate that his lungs are already beginning to recover, i suppose we need to focus on the fact that things could have been much, much worse. even so, barring any complications, eric probably won’t fully recover from pneumonia for 2-3 weeks. while he likely won’t need to be on the vent for the entire time, we’ve noticed that the staff has stopped making predictions as to when he’ll be off the vent.

it’s hard to imagine what tomorrow will bring.

oh. and in an attempt to accentuate the positive, i should note that eric weighed in at 1075 grams or almost 2 pounds 6 ounces.

update: in my tiredness when i posted this last night, i forgot to mention the highlight of our day – the arrival of two pounds of rowena’s pound cake with “curd” sauce that my sister candy sent to celebrate eric hitting the two pound mark! it was a very sweet gesture. literally 🙂

candy mailed the pound cake to my home ( she’s family, so she gets to do that ) and i cleverly took it to the nicu right before the shift change, so that both the day and night shifts could enjoy the gift ( bonus points for me! ). i can say without a doubt that everyone enjoyed the cake.

the eric update – day 38: improving. but bugs and decreased lung function looming.

day 38: head of hair

the good news is that eric’s overall clinical picture is improving, even though he is still on the vent, which is to say that his blood counts are showing that his systemic infection is nearly gone and his blood gas profile is looking great. the shortest answer as to why he’s on the vent for longer than he’s ever been is that they are concerned that they want to make sure that his bowels are completely recovered after shutting down the other day before they put him back on cpap. the armchair reseachers in the crowd can investigate why cpap is bad after an illeus ( the technical term for the lower bowels stopping to function ) because i haven’t had the time to put all the pieces together.

although his overall status is improving, we were warned about a few new issues that are developing. after 5 weeks of not needing much supplemental oxygen, eric is starting to need to have his ‘ooooooh’ increased; in other words, while he’s done remarkably well in the past breathing unenriched room air ( with around 20-21% oxygen) , he’s now consistently needing 25-40 percent oxygen in his air supply. of course, there are several reasons why he might be needing more oxygen.

most innocuously, he might simply be getting comfortable on the vent and getting lazy, taking fewer and shallower breaths. breathing takes a lot of work, and if the machine is going to do the heavy lifting, many micropreemies are more than happy to take a breather from breathing and require a little more oxygen to keep their blood gas levels at appropriate levels. while this might be partly the cause, he respiratory profile doesn’t indicate that he’s getting too lazy, so my guess is that it’s only playing a minor role.

day 38: hand on cloth

slightly more disconcertingly, he may also be developing a tracheal infection, which can irritate his mucous membranes and produce more slime and goo than normal; more slime and goo makes it more difficult to breath and increase the need for supplemental oxygen. he certainly seems to have more secretions than normal of late. and indeed, while we were discussing the potential for trach bugs, eric’s latest labs came back and he was positive for enterobacter and klebsiella which are gram negative nosocomial bugs – in other words he got an infection from bugs that you find in the hospital. while it’s not something that you want to see, it would be more remarkable if he didn’t get a nosocomial infection from all the tubes entering various parts of his body. technically, the bugs have simply colonized and have not shown any evidence of becoming particularly invasive. simply put, they are just hanging out and slowly multiplying around his ET tube and don’t seem too concerned with overtaking his system. it’s very difficult to pummel colonized nosocomial bugs into complete submission so they are going to wait and see if eric’s nascent immune system can keep them in check. i guess you could call this a developing story that could “get legs” and hit the front page soon.

day 38: overhung leg

perhaps even more problematic is the fact that eric could be developing a lung condition known as chronic pulmonary insufficiency of prematurity (cpip). essentially, this means his lungs are not growing fast enough to keep up with the oxygen requirements demanded by his growing body. cpip presents itself similar to bronchopulmonary dysplasia (bpd), but they are actually different enough to warrant different treatment strategies. this evening nurse practitioner dawn was not willing to say that he definately had cpip, but she said it wouldn’t surprise her at all to see him get the official diagnosis over the coming weeks. the good news is that if he does have cpip, he will quite likely eventually regain normal lung function ( perhaps by year 2 ). the not-so-good news is that cpip could necessitate that he leave the nicu with an oxygen tank.

just in case you’ve started to miss the forest for the trees, the good news is that eric’s overall clinical picture is improving.

and we’re still getting postcards ( scroll down to the bottom of the link )!

the eric update – day 37: more of the vent. and a little levity.

day 37: more gagging on the vent

more of the same today, by which i mean gagging on the vent endotracheal tube. hopefully he won’t have to put up with it much longer, although the staff is being a little cagey about when they might take him off. the party line is that it might be tommorrow, or maybe the day after that. so it’s time for another exciting round of The Waiting Game. of course, there’s not much to do in this round because being on the vent means he doesn’t have many alarms since the vent is doing all the work, and there’s no holding or kangaroo care to be had. apparently some nicus allow some ‘roo time while babies are on the vent, but ours isn’t one of them, because of the risks involved of moving an such a little thing around while being intubated. watching him as he tries to launch the tube out of his throat, i can see how they might come to that conclusion. eric is still gaining weight despite being only on intravenous fluids; tonight he weighed in at 1040 grams or 2 pounds 4.7 ounces, although it’s tough to know how much of that is “fake” weight due to the transfusions and water retension.

day 37: foot sore

they are taking a lot of blood out of eric to track his progress on fighting his infection, which means lots of blooding of his blood and pricking of his foot to get blood to test his sugar levels.

day 37: reading An Innocent, a Broad

in one of those small pieces, loosely joined moments, i was reading susan dennis’ post on how she had become so enthralled with following eric’s progress ( or lack thereof, as the case may be ), while also reading An Innocent, a Broad by ann leary, who happens to be dennis leary’s wife. as soon as i learned that the book is her account of having an micropreemie while on a business trip in london, i knew that i had to run out and immediately get the book to help me pass time while playing The Waiting Game. jeez louis. we managed to get to page 11 before kris and i broke into hysterical fits of laughter complete with tears rolling down our faces, as ann and dennis try to come to grips with the fact that she’s just has a premature rupture of membrane ( PROM or, simply, her water broke too early ).

“It’s true that at times like this we learn of what we’re really made. I used to think that if I were in a major disaster – say a plane crash or an earthquake – I would be the one to take charge. While the weak-willed people with the small brains ran shrieking into the burning wreckage, I would be the one to stop them and lead them to safety. In my mind most people were handwringers, unable to take action, while I was a doer, the who could coolly Heimlich the choker and tourniquet the bleeder. It was easy to hold these beliefs about myself, as I had never actually been involved in any kind of real-life crisis. I identified with the heroes and heroines in literature and felt sure that I would have been able, for example, to deliver Melanie’s baby in Gone With the Wind or rebuild a plantation with nothing but my bare hands and razor-sharp intellect. It never occured to me that nobody sees herself as Prissie the useless slave girl, and that it’s easy to feel brave when the most immeninent threat is an overdue cable bill. So it came as a bit of a surprise that afternoon in central London to learn that I am, in fact, the shrieking, running-into-the-burning-wreckage type.

“Maybe you just peed your pants, “Dennis offered hopefully, between my wailing cries.””

day 37: quarter sized

it’s hard to remember exactly how i held up on the day that this all began. i think i started off as more of the calm, cool and collected type than even i thought i was capable of, but slowly as the day wore on, i’m fairly certain i transmorgified into the shrieking, running-into-the-burning-wreckage type. luckily, at that point we were already surrounded by a cadre of trained professionals and not standing on the corner with nobody to turn to but dennis leary 🙂

the eric update – day 36: stabilizing. gagging. and just a bit of jealousy.

day 36: bearer of the ring. II.

eric spent the day stabilizing. as quickly as things started falling apart, they appear to be coming back together, thanks to the fast response of his care team. he’s still on the vent, but amazingly, he’s doing so well that they they’re just letting him cruise to give him a rest while he fully recovers from the infection. his differential blood counts are all returning to normal and there’s still no sign of bowel perforation. we’ll never know what caused his skin to start to slough off. nurse debbie said it might not have even been an infection at all, but rather a circulatory issue. micropreemie skin is so delicate that small changes in circulation can cause the skin to deteriorate.

day 36: gagging

there’s certainly no doubt that eric’s gag reflex is developing quite well, as he spent much of his waking time choking on his endotracheal and od tube which releases air from his stomach. although he was relatively comfortable, it was still quite difficult to sit by his bedside and watch him gag on his tubes over and over again. they could have taken him off his vent today because he doesn’t appear to need its help for breathing, but they want to let him get a little more rest while he’s recovering from his infection. from where we’re sitting it’s hard to see how he’s able to rest while he’s gagging, but i guess that’s the way it goes.

day 36: yet another transfusion

he got another 10 cc’s of blood. they are taking a lot out of him since they are running a bunch of bloodwork to monitor his infection. whatever they take out, they have to put back in.

day 36: blood pressure

whenever they give him a transfusion, they monitor his blood pressure closely. the white cuff on his right leg is pressurized, which is making his foot red. eric doesn’t like this one bit. if you look close you can see that he’s squeezing his fist and pushing it against his thigh, while sucking a bunch of air in his belly and kicking up his left leg.

no, he’s not happy at all. soon it’s all over.

day 36: get this blood pressure cuff off me!

he’s wriggling his foot as if he’s trying to kick off his cuff.

day 36: cuffed leg and hand

so, other than a little gagging and a transfusion or two, it was a fairly quiet day. i suspect in the next day or two, eric will be back on the cpap and start feeding again. maybe we’ll even get to start kangaroo care.

day 36: transfusion stopcock. I.

today, we also had to deal with an issue that any nicu parent faces – comparing your child to those around you. it’s one of those things that you know you can’t do, but which is basically impossible not to do. in our case, one of the new admits across the way happens to be a 27 weeker who came in at 1 pound 9 ounces.

day 36: pampers (tm). III.

he’s aready on nasal cannula full time and graduated from a radiant warming bed to an “isolette”, which means that the don’t think that he’ll require as much intensive care as eric still requires.

day 36: pampers (tm). II.

while we’re tremendously happy for the 27 weeker parents, it’s hard not to feel jealous at how much difference two weeks can make, as we watch eric gag on his ET tube.

the eric update – day 35: i want off this ride.

day 35: resting on the vent

three hours. that’s how quickly things can go to hell in a handbasket. we left at 11 p.m. last night, as confident as ever that we had escaped any problems which seemed to be lurking in the background all week long; by 2 a.m. several of eric’s systems were failing all at once and by 4 a.m. there was serious concern that he might have a perforated bowel and they were getting ready to transport him to the other nicu in town for emergency surgery. at the time, apparently the only thing that kept eric from being transported was the fact that the surgeons said that they wouldn’t do the surgery on him because he was too small to survive.

day 35: raised fist

the following twelve hours were filled with as many, if not more, emotional ups-and-downs than the night eric was born. as the complications were delineated it became apparent that he had not one, not two but three calamitous events occurring, two of which were characterized as rare. the most acutely dangerous event was known as a strangulated hernia ( ironically, the determination that he did, in fact, have a hernia was considered so uneventful that i decided not to post such boring news right away ), which happens when fecal matter gets pushed into the herniated bowel and can quickly lead to a perforation. and the last thing you want with a micropreemie is a hole in the intestine, leaking fecal matter and air throughout the abdomen. it’s quite uncommon to see a strangled hernia in a micropreemie; only one of the nurses could remember an occurrence, 7 years ago, and couldn’t remember having seen any prior incidences. somehow the neonatologist was able to unstrangulate his hernia by holding him upside down and pushing and poking at the hernia. in a very understated way, the neonatologist would later allude to just how lucky we were that her improvised unstrangulation technique worked, as i’m not sure what would have been done since it was already determined that they weren’t going to perform surgery on him on account of him smallness.

day 35: pigs in a blanket. II.

why was fecal matter being so forcefully pushed through his hernia? because it didn’t have any place to go as his bowels were shutting down and everything was stopped from moving along normally. in addition to creating a strangulated hernia, his backed up bowels quickly began pushing on his lungs, which stopped his breathing and necessitated eric being put back on the vent. and why were his bowels shutting down? a quick blood panel indicated that he was quickly getting an infection ( as evidenced by an increase in immature neutrophil cells or bands ), and his body began shunting blood away from his bowels and towards other areas in preparation for a battle royal. routing blood away from the intestines is likely a good strategy most of the time, as who has time for eating when you’ve got a bad infection, right? unfortunately when you’ve got 7 cc’s an hour of breastmilk coming in and blood moving out, you’re actually creating the best possible conditions for necrotizing enterocolitis.

day 35: arms crossed.

as if a strangulated hernia, backed up bowels and a worsening general infection weren’t enough to make for an exciting night, the nurses discovered that while they were trying to unstrangulate his hernia, his skin was sloughing off. yes, you read that word right, his skin was falling away. disintergrating. and creating a festering mess. for a little thought experiment, try to imagine having to absorb the word sloughing at 4 in the morning. at the time the disintegrating skin was perhaps the scariest news, because nobody had seen anything like it. nobody. in the morning nurse jan confessed that she hadn’t seen it in 22 years of working in the nicu. even the infectious disease specialist hadn’t seen anything like it.

oh, how we were wishing for good old days, when the worst we had to worry about was whether or not he’d be put back on the vent.

day 35: by the light of observation lamp. I.

so the day was spent trying to come to grips with how quickly and how completely everything had fallen apart, as we tried to stay focused on how his clinical pictures was changing from moment to moment. an antibiotic regime was started to help fight the general infection and they decided to treat the mystery topical infection with pretty much everything they had as they were lacking any any definitive specific lab results ( no trace of yeast in the infection and no bugs are caught growing; the lack of any yeast was described and bizarre, since you’d expect to see some and as we learned in the past, it’s not that surprising to not catch the bugs ), they decide to treat it as if could be anything, which i guess is just about the only thing you can do. as the day wore on, his blood counts began to slowly return to normal and by the evening almost all evidence of the skin sloughing had disappeared.

day 35: by the light of the observation lamp. II.

it’s hard to describe the feeling that you’re left with as you realize that the wreckers of such rare havoc are going to fade away without you ever knowing their names.

day 35: lots of x-rays.

it took quite some time for the neonatologist to rule out a bowel performation, as the regular x-rays kept showing large amounts of air in his bowels and it was difficult to know if the air was inside or outside the intestine; a specialized x-ray machine was hauled in which could more easily allow them to determine if the air was moving as he changed positions, which would mean that it was floating around his abdominal cavity.

day 35: hand lines

as luck would have it while the film was being processed, there were two more admits to the nicu, which meant that we had to sit around, wondering when they’d get a free second to review the results and release us from the purgatory of not knowing if he had a perforation. eventually, the neonatologist rushed in and exclaimed that everything looked great and that we were out of immediate danger for now.

day 35: content despite it all.

it’s funny how quickly you can reset your personal expectations as to what constitutes good news. before we left for the night we watched eric resting comfortably on the vent, feeling a sense of relief to see him so peaceful while pondering the irony that today’s good news would have been yesterday’s catastrophe.

day 35: fingers

many, many thanks to all of eric’s wonderful caregivers whose attentive observations and quick, accurate actions helped to avert what surely could have been a disaster. i’ve said it many times already, but i have no idea how you do what you do.

day 35: earscape

the eric update – day 13: a mostly lazy day

day 13: holding hands

today was a very boring day with not a single, solitary alarm; well maybe this is not quite true actually, as the nurses will typically induce apnea during some of their procedures, but nobody counts those. except maybe for eric.

he’s still on the vent, but they are continuing to gradually reduce the settings and suspect that perhaps over the next few days he might be able to go back to the less abusive CPAP regime. this is surprisingly good news, because the staff has been suggesting for the past few days that he could possibly be on the vent for a couple of weeks.

and his infection seems to be getting better. there’s still no definitive results to indicate what sort of infection he might have, but all of his differential blood counts are looking more positive and his blood sugar is normalizing.

during a quiet moment, i catch kris holding eric’s hand/arm. he just had a few procedures done that he didn’t care for and she’s using a technique that the nicu staff taught us to calm him down – i.e. he feels more secure when you firmly hold his arms and legs against his body. it gives him a sense of boundary that he got used to in the womb.

day 13: wrinkled II

so, with a lack of white-knuckle events to pass the time, we found ourselves enjoying just sitting around his bed, reading more from winnie-the-pooh, talking with the always informative and mostly cheery nicu staff and just generally having what passes for a lazy saturday these days.

it’s amazing how much his skin changes from day to day, depending on whether or not he’s received a transfusion or how much fluid he’s retaining.

today he seems particularly wrinkled.

every so often he’d open his eyes and watch me taking pictures, but he didn’t seem to want to keep them open for long.

the eric update – day 11: The Call on A Very Small Animal

day 11: back on the vent

the phone is ringing.

you awake with such a start that you actually have to remember that you were just sleeping.

after remembering where you are and that phones ringing at odd hours are A Bad Thing, you’re off the bed and launching yourself out of the bedroom and into the hallway, heading towards the place where the cordless phone should be, but isn’t.

you wonder why the phone is never in the first place you look, as the answering machine that’s cleverly located down three flights of stairs picks up the call. your adrenaline is pumping now, but not quite enough to stop the asinine thought from entering your head that it might have been a wrong number.

after navigating the byzantine phone menu you finally see what you knew all along – a missed call from st. mary’s hospital.

you discover that it’s clearly not going to be a good day when you try to dial the number revealed on caller-id, only to find that the number has been disconnected. it doesn’t make sense in that way that only makes sense at this hour. defeated, you toss the phone to your better half who somehow manages to get a nicu nurse on the line.

efficiently, it’s relayed that nothing tragic has happened.

“o.k. he’s back on the vent?”

“you had to ‘bag’ him twice in the night?”

“his bloodwork indicates that he might have an infection?”

you wonder if there are any negative side effects to repeated and prolonged episodes of fight-or-flight syndrome as the conversation ends with a succession of “um. yeahs.” and “o.k.s” and a final “o.k. we’ll be there as soon as we can.”

and so coffee is made, dogs are walked and breakfast is skipped, but a shower is not.

as you walk into the nicu, you can see all the nurses looking at you kindly, but observantly, out of the corners of their eyes. they know you’ve received your First Serious Call and they are observing you for signs of A Major Freakout. you think you feel fine but you wonder if maybe you don’t know yourself as well as you might like to believe.

as you walk up to his bassinet, you hear the acronym soup that is suprisingly comprehensible: a ‘PIP’ of 15 and ‘PEEP’ of 5. his backup respiratory rate provided by the ventilator is 40 and his ‘oooohs’ are set to 35%. he got ‘bagged’ twice in the morning even after going on the vent and his wbc went up to 11 from 1, which means that he could be developing an infection; consequently, they’ve begun giving him vancomycin and genomycin.

you watch in one particularly unsettling episode as your child turns gray as your wife and the nurse attempt to get him breathing again.

as they’re telling you all this, you notice that your new social worker, jennifer, is emerging from the background and trying to calmly assess you. you imagine that your reactions might even become part of your permanent record. you reassure jennifer that, indeed, you have the mental fortitude and steadfastness of character to weather the most perfect of storms.

day 11: an ear and hair, a shoulder and a bit of tape

later. with no kangaroo care to be had and him spending much of the day sleeping on the vent, you find yourself studying your son’s head for quite some time and decide that today is a good day to begin teaching him about pooh.

you might not be able to touch him, but you can certainly still read him his first book.

“”it is hard to be brave,” said piglet, sniffing slightly, “when you’re only a Very Small Animal.” rabbit, who had begun to write very busily, looked up and said: “it is because you are a very small animal that you will be Useful in the adventure before us.””

day 11: his first book