Fundo done

Well - Evelyn is now the proud owner(?) of a Nissen Fundoplication.  In short, the impetus for the surgery was to mitigate any reflux as a likely partial source for aspiration pneumonia.

We went in to the hospital on Sunday 18-Apr, just to be "checked out" by the pulmonology crew, and generally get ready for the procedure.  At 10AM on Monday, Evs had the procedure.  Happily, it was able to be performed laparoscopically, so Evs came back with 5 little heart-shaped bandages, in a sort of a rainbow across her tummy (see pic).

The first day was a little rough, as due to Evs' very recent respiratory issues - the anesthesiologist wanted her to remain on the vent for the entire first day following the surgery (instead of being extubated shortly after surgery "as usual").  That's actually the first time Kim or I have seen Evs on a vent for any significant period of time (if honestly ever actually seeing it) - so that was a "tough first" for us.  True to form, though, Evs said "enough was enough" - in part due to some seizures being out-of-whack (anesthesia'll do it every time...), coupled with some... ahem... "general agitation" - Evelyn extubated herself at around 5AM the following morning.  ;-)  She wasn't quite ready to go it totally on her own, though, and had to go back on bi-pap for the next day - but other than that - it was an uneventful surgery, which is the kind we like.

The rest of the week was essentially "recovery" - ramping down the bi-pap & oxygen usage; managing post-op pain; downgrading from the PICU to the TICU - "etc".  We also managed to squeak in a visit with the rehab doctors for another Botox treatment (seriously, Botox.  It helps with her muscle tone; see Botox!).  By late week, she was starting to look much more chipper, and was on "room air" during the day - pretty much back to baseline.  After taking her on a few tours around the TICU Friday, and the general hospital grounds Saturday - We were discharged early Sunday (for once, not during rush-hour!).

So - all's well that ends well, I guess.  Kim counted, and to-date, we're at 39 days of 2010 in the hospital.  Here's to hoping this surgery does the trick & we're much less frequent flyers at the Scottish Ritz for the balance of 2010!

Here we go again...

Well... "Here we go again... It's the same old song..."

Since the blog's a few weeks behind, let me rewind it, briefly.  After the last PICU/TICU hospitalization in mid-January, we were discharged, and home for about 4 days.  We then had to bring Evs back in for another ~4 days or so, just as she was starting to work a little hard again at breathing, but it was a relatively uneventful stay on "the floor" (non-ICU).  This made for more days of January spent in the hospital than out - but, nonetheless - we got out!

Coming out of all that, we ended up with nursing care at home during the week, to help keep up with Evs' daily routine (breathing treatments throughout the day, etc).  And from then until now - things were going pretty well!  Evs was returning to "herself"; she wasn't needing significant oxygen at night; she was getting back in to therapies - "etc".

But, then - we get to "now".

Right at a week ago, when the weather was equally nice, we took Evs out for a few hours, and opened the windows in the house, to get the "stale winter air" out, and get some of that fresh spring air in.

We don't know yet if that's what did it - maybe triggering some allergies - or if Evs picked up a random virus while out & about, or otherwise - but Monday (29-Mar), she started having problems keeping her oxygen saturation up, and Kim & her nurse took her down to the ER.  She seemed to settle out over the day, so she was sent him.  Tuesday morning (30-Mar), she had a follow-up appointment with her pulmonologist.  She saw the PA, who didn't see anything acute of note, and just had a general follow-up-type-of-visit.  By that afternoon, though - testament to how fast these things can move - she had a mild fever a was on 3L of oxygen, and still wasn't quite keeping her saturation up.  So, back to the ER she went.

After a somewhat-aggravating experience (as Platinum Medallion/Super Elite Frequent Flyers at Scottish Rite, we're not used to having a hard time in getting our way ;-) ...) and a chest X-ray, Evs was admitted, with likely diagnosis of pneumonia.  Again.  At any rate, over the course of the evening, she really just couldn't keep her oxygen saturation up - the pulmonologist on call for the night, who had thus far been working from home, came in about 2AM to check her out & work his magic in-person, but he finally had her sent upstairs to the PICU.  Again.

After trying their luck with a high-flow cannula - which was the most support she ever got on her last stay - we still weren't getting good numbers, so they bumped her to a BiPAP (what Evs is so graciously modeling in the picture).  In very short, it's a mask that seals around her face, and provides both inhale and exhale pressure, to help give her a little more "oomph" to her breathing.  This both helps keep her airway open, and also helps "fill out" her lungs a little more, to help fight or prevent atelectasis (when the alveoli in your lungs - like teeny little balloons that help you breathe - deflate or collapse on themselves).

After about a day and a half of that, she really started to show some good progress - they bumped her back down to a high-flow cannula, and she was really holding her own.  Also encouragingly, her blood cultures didn't show signs of infection, which likely ruled out a proper pneumonia, and likely just the aforementioned atelectasis.  She was clearly starting to feel better, as she was able to use her button to tell us she wanted pigtails, what she wanted to do, etc.

And then she had a seizure.

Now - Evs has seizures.  We don't like it, but that's her baseline; it's part of her life.  Honestly, it was probably prima facie evidence to the fact that she was indeed feeling better - "returning to normal" - which for her, includes seizures.  However, this one didn't stop (also not uncommon for her seizures when "coming out of a painful episode", such is illness, or cutting teeth, etc) - so they had to administer Ativan.  Which still didn't cut it, so they had to go for a little more, and finally some Diastat.  Both of which are related sedatives, and make an already-floppy airway more floppy.... and you can probably see where this leads.  It could have been an aspiration episode during or after the seizure (of refluxed food, or her own secretions), or it could have just been more obstructed breathing - but ultimately, it led right back to BiPAP.  Which is where we are tonight.

It's certainly frustrating to take two steps forward... then one back... then at least another half-step back (if not a whole step).  On the up-side, Evelyn's body doesn't seem as stressed as before - likely because it's not an infection or "proper" pneumonia - last time, her heart-rate was consistently 160+ BPM, and her respiratory rate was equally-consistently 60+ breaths/minute.  Both measures are significantly less this time (though her heart-rate crept up some today...), which is a good thing - she just seems to be having a hard time keeping her oxygen saturation up.  On the down-side, it's certainly unpleasant that she's having these issues at all.  It's also a little more bothersome that she's spending more time on the BiPAP - which for all the trouble she had on her last stay - she never used.

At this point, it's most "watch, wait, and continue respiratory treatments".  To try and get more to "root cause", it boils down to two issues (at risk of oversimplifying) - preventing her from catching germs (viral or bacterial), and preventing her from aspirating.  The former should be getting easier by the day, as the weather warms up, and there's obvious measures we can take to at least help (keeping her out of crowded areas, etc).

The latter is a little more complicated.  Outside of gradual speech therapy, there's not tons you can do to quickly & markedly improve swallowing skills such as to prevent aspiration.  So you're left with treating the cause of things getting into the airway to be aspirated in the first place.  In Evs' situation, those things likely come from 2 places: things she may reflux up, and her own secretions (e.g. saliva), particularly during a seizure.

So, we are beginning to talk about a Nissen fundoplication to prevent or rule out any reflux as part-cause of aspiration.  We've also been considering a Vagus Nerve Stimulator for a few months, as a next-step in trying to get her seizures under a little more control, and will likely take at least the next steps towards that during this hospital stay (a 48-hour EEG).  The timetable on either of those is still a little uncertain - but will likely be in the "near-ish future".  Of course - first thing's first - she needs to get to breathing better!

So that's where we're at.  Not a lot of "great" news, I'm afraid - but, at least as of this writing - she's holding her own, and not in a rapid or marked decline.  The more these things happen - and the more "help" she needs - the more it bothers Kim & I, to be sure.  But, as usual, Evs is fighting it all with superior grace, style, and just a little bit of 'tude.  ;-)  So I will sign-off focusing on that, and thank you all again for the thoughts & prayers - and wish a Happy Easter to all!

Out of the PICU; in to the TICU!

Well, so far - so good!

Today, we were moved from the PICU to the TICU.  The TICU is the "Technology-Dependent ICU" - normally reserved for kids requiring ... technology, to live.  E.g. Ventilators, Trachs, etc.  No, Evs thankfully does not fit into that category (though a number of her Aicardi sisters do, so we are most sympathetic).  While both do have "ICU" in them - the used the TICU as a "step-down" (or as I jokingly referred to it, a "halfway-house") from the PICU.  To get there, Evs had to be off of a high-flow oxygen cannula - which means she's down to 2L of oxygen, which - considering her peak of 15L - is good progress!

Friday & Saturday were overall pretty good days for Evs - her right lung looked a little hazy again, but just as a result of some settling mucus, and not infection.  The doctor was actually encouraged by this; as she had some mild "gunk" to work through to breathe, but she had not really exhibited any outward issue - e.g. her oxygen saturation was remaining high, she wasn't struggling, etc - so she was able to "work through it", which is good.  Anyway, after turning her every 2 hours over the course of the day & overnight - her lung looked much better by morning.

Today (Sunday) was a little "up-and-down" - respiratorily, she continued to do well, leading to her move "downstairs".  On the downside, she had 2 seizures, both of which required Diastat.  Boo.  Our hopeful theory is that maybe we're seeing as similar trend as when she was teething - very few seizures "while she's hurting", and then when she's strongly on the mend - whamm-o.

At any rate, we still think we're on-track for a late-week jail-break - so we're keeping our fingers crossed for that!

No news is good news

Apologies for the lack of update yesterday (hence the subject, aptly quipped by a friend) - Daniel's mom spelled us at the hospital overnight - so we both got home about 10PM, hit the bed, and didn't move for a solid 8 hours.  Thanks, mom!  ;-)

At any rate - I'll keep this brief as it's late again (I'm back on night-duty) - but the last day or two has been reasonably quiet, and filled with (as expected or hoped for) "slow but steady positive progress".  The doctors even decided to forgo a lung X-ray this morning, as Evelyn's previous day X-ray looked so much better, and when they listen to her breathe - she sounds much better.  Evs spent all day yesterday awake - which though by the end, she was "ready for bed" - that is a first since Saturday.  So that is all very exciting!

Oh, and as per the picture - we did take a brief moment yesterday to "be with the Jackets" in spirit, in their ill-fated Orange Bowl venture.  No, Evs didn't actually watch the game, and that's probably what the issue was for the Jackets - sorry boys.  ;-)

We have had a few "minor" issues in the last day or two - there was some concern over kidney stones, but that (as of this writing) has been nullified - However, they're still keeping close watch over things in that department.  Evs also had a little agitation late yesterday - but I think I'd be agitated, too, by this point.  ;-)  Not at all to "downplay" or "mock" her feelings - but frankly we're glad that she's feeling well enough to express them.  :-)  We're also working through some more of her "regular" stuff that we've had to put on hold over the past month due to the hospitalizations - just getting in consults with some of her other doctors, and figuring out how to adjust various ourses of treatment given the added complication of being hospitalized (Rehab, Orthopedics, Ophthalmology, etc).

At any rate, based on our most recent consult with Evs' pulmonologist - assuming Evs continues the uptrend, of course! - we expect to remain in the PICU through late this week, and then be downgraded to a "regular" room, where we'll likely remain through late next week.  As painful as a solid 2-week tour might be - I think her pulmonologist really just wants to see her "completely and 100% well" before giving us our walkin' papers.  Which is hard to argue with.  ;-)

With things on the up-tick - assuming they stay that way - I'll probably slow down the flow of "push" updates by e-mail a bit, just to give everybody's mailbox a break, and let the subject of this post be the prevailing sentiment. However, I'll try to continue to get several updates over the course of the week posted here, and drop a less-frequent mail or two to let you all know how she's doing.

A last update on the other character in the Forester household, as several have asked - Mr. Owen has been such a big boy, with all of this going on.  He has endured numerous car-rides, waiting rooms, caretaker hand-offs, bottle-feedings, late-nights, seeing lots of strangers, absence of "mommy AND daddy", not seeing Big Sister at all - ad infinitum - with exceptionally good humor and disposition. We continue to thank God every day that we've been blessed with a baby who sleeps well, has a good disposition, and tolerates all the circumstance.  We know very well that not all babies are "so easy", and we know that even Owen could "turn on a dime" in that department - but for now, we figure it goes to show "you get what you need, when you need it".  Anyway, all-in-all, for the positive - he's gotten lots of extra grandparent time, as well as enough praise and adulation from every passer-by that comes within 10 yards to give the kid a head the size of a  bowling-ball - so he's making lemonade out of his lemons.  ;-)

Anyway, thanks again, so so much, for all the thoughts, prayers, concerns, notes of encouragement, "Likes" on the Facebook posts, and offers & instances of help.  It's really hard to imagine grinding through all this in absence of it, and it is very much appreciated.

Vest therapy & a good day

Well, I think we can say that all circumstances considered - Evs has had a pretty good day today.  She got a bath early this afternoon, which she wasn't altogether happy with - but seemed to be feeling "herself" as much as she has since being here, which was evidenced by her stomping her feet through the "bath" (hospital bath-on-a-bed), since she didn't necessarily enjoy it.  ;-)  Afterwards, though, she was pretty "awake" and "on" for a while, and so we put her in some pajamas from home (her Tinkerbell PJ's; a fun Christmas gift from a friend), we got her glasses on, and just got a little "Evs time", which was really nice.

I took the opportunity of her being "awake" and doing well, and having an opportune moment with the web-cam, to grab a quick clip of her in the Vest therapy, since I don't know if my earlier descriptions of the subject sufficed (or ever could!).  Per earlier description, in very brief, it's essentially an air-filled vest that is filled via an air compressor.  This does two main things, both designed to help "bring stuff up".  Firstly, it just constricts & tightens some around her abdomen - think of your tightening diaphragm & core muscles when you cough - Evs has a hard time with that, so this "does it for her".  Secondly, it applies chest physiotherapy, which can be thought of roughly akin to "slapping somebody on the back" to help them cough:

It uses a compressor to inflate and deflate the vest rhythmically at timed intervals and thus imposes high frequency chest wall oscillations that are transferred to the lungs.

So, all that said - here it is in action, for the curious.  ;-)  I'll apologize that the video is not the best; the audio has moments where it gets a little scratchy, and the web-cam had a hard time re-focusing on "all the stuff" - but here-goes:



All in all, with today at a close - we can say it's been a good day, I think.  Definitely a good day, when coming on the heels of yesterday.  In brief consult with her pulmonologist, the name of the game is pretty much also as earlier-described - wait, watch, and wean - where the latter is weaning down or ramping down treatments as she tolerates, or otherwise hopefully improves - e.g. dial down the oxygen; put more time between - and less medicine into - the nebulizer treatments; etc.  We're definitely not out of the woods yet (I guess if we were, we'd be out of the PICU), but "today was a good day", and we'll take that!  Thanks again for all the thoughts & prayers - they are so very much appreciated.

morning update - hopeful bottom-out & up from here!

Well, just a short update - Evs had a pretty good night last night - the first half of it was better than the second half, as she seemed to be a little agitated for a while in the wee hours, which also got her heart rate back up - but for now, that's abated, so I'm hoping it was a "I'm-feeling-well-enough-to-complain" for a little bit.  ;-)

At any rate, the big test of her lung x-ray was done this morning, and I'm please to report that it looks better.  Not "clear and resolved", by any stretch, but "progress has been made", and that's the answer we needed.  Evs also managed to dodge any intubation last night, so that's also very positive.

The name of the game today, for the most part, will be "watch and wait" - she'll move from continuous to intermittent breathing treatments (nebulizers), as well as titrating down her Dopamine drip, so long as her blood-pressure holds (which so far, it has).  With any luck, she'll hold steady or maybe have some small improvement, and that will be a good day.

So I find myself using a phrase that I use at work more - we are "cautiously optimistic" that we've bottomed-out and are headed up.  As we've seen, things can swing in either direction quite quickly - but hopefully they're more "upswings" than "downswings" from here on out!

"She's a very sick little girl"

Well, I wish I had better news to report, but "the news is the news". Evs did fair through the night last night (outwardly, anyway), but overall today was up & down, and the doctor's prognostications of "it'll get worse before it gets better" seem to have held true. Tonight left us teetering on the brink of intubation, but so far, holding off.

The quick run-down of the day:

• As of this morning (chest X-ray), Evs' right lung is ~75% "crudded-up" - this is a "marked" degradation overnight from the previous night
• Her left lung was "hazy", but "okay" (for now)
• Labs this morning showed a little more conclusively that it is bacterial (rather than viral) pneumonia
• This means it was a likely result of aspiration, which we'll have to re-evaluate the cause & future prevention of - e.g. it could be anything from her coughing & aspirating what she coughs up, to aspirating some of what she eats, to have some level of reflux & aspirating that.
• Her antibiotics were upgraded to stronger, broader-spectrum antibiotics - Vancomycin andMeropenem.
• We added a Vest to her treatment regimen, which is essentially an inflatable ... well... vest, that can have air-pressure and percussions applied to it, to help "squeeze & shake out" the mucus in her lungs.
• Evs really just struggled up-and-down over the course of the day - sleeping, for the most part, but not getting much rest, due to constant "huffing and puffing". She stayed reasonably oxygenated (over 90%), but her heart rate was consistently 160-170 bpm (peaking at 180), respiratory rate 60/min (that being a breath a second, sustained!), and by later in the afternoon, her blood pressure started to dip (which is also likely contributing to her increased heart rate, etc).
• The low blood pressure was likely due to her own body not quite reproducing enough new blood cells due to the infection, and her just working so hard all day to breathe.
• Evs' supplemental oxygen flow (well, heliox & other associated breathing treatments included) topped out at 15L - this, if nothing else, is indicative of the day she had - 15L is huge. We're still pretty new to the respiratory world, but at home, we considered 2L "bad".
• Dopamine was added (IV drip) to help with the blood pressure, but it didn't seem to completely do the trick, so she risked slipping into shock. Thereby, late in the day, a blood transfusion was started, to combat the falling blood pressure. New IV sites for that wouldn't hold (means more worthless sticks... :-( ...), so they started a central line (femoral IV).
• If her blood pressure, respiration rate & heart rate don't stabilize - she will likely be intubated & ventilated.
• We will likely start a 7-10 day course of IV antibiotics via PICC line tomorrow.

As you can see - quite a day!!

On the positive side, while having an X-ray taken to verify the placement of the central line, they could pick up some of her lower lungs on the film - while not the entire lung (as it wasn't the subject of the X-ray), what they saw did seem to show that the infection was clearing some - so that's heartening. Also, as of this writing - the blood transfusion is about half or more complete, and her heart-rate has dropped a good 20-30 bpm's or more, and her blood pressure is looking better. As long as she can maintain where she's at or better for the night, we should be able to avoid intubation - so here's to hoping for that!

In short, I think my dad summarized it best earlier today - "she's a very sick little girl". It's also just been a good long while since we got a proper "waiting room debrief" from a gowned doctor, which coupled with their sincerity in relaying the seriousness and relative precariousness of Evs' situation - is a little unnerving.

Anyway, other than monitoring her various rates overnight, the next "big check" will be early tomorrow morning, when another chest X-ray is taken, to see how her lungs are looking. More then, or as news breaks!