It Wasn't All Bad

Certainly, when Bridget and I are in the hospital, it is not all kitten whiskers and fairy dust.  It's stressful and boring and too many monitors going off all at the same time.

That said, this last trip to the hospital had some pretty AWESOME moments to it, not the least of which was the big family party we had on our last Friday night there.

The Child Life Specialists let us borrow Chicken Run.  Bridget was completely off oxygen and had found two skateboards you sit on and wiggle to move.  That's how I would describe it.  It is actually this:

and it is way cool.  She stashed one for Christopher and one for her to ride around the room.  Our hospital room was actually big enough for them to ride around in these.  

Dave stopped by Trader Joes and got a bottle of wine for us, root beer for the kids, and a big bag of popcorn. 6:30 arrived and we started our family movie night.  

And wouldn't you know that about 7:00, I realized one bottle of wine was not going to cut it for the amount of adrenaline I needed to quell.  You can judge me as you'd like, but Dave and I knew early on that this was a two bottle night.

So I did what every other no other mother in a hospital does : I updated my Facebook status to ask for any of our friends who live close to the hospital to drop us off a bottle of wine. Within minutes, I was negotiating types of wines and in less than 10, I was in the driveway at the front of the hospital making the exchange.  John T., you blew our freaking minds.  He even included a bottle opener, because the first one Dave brought was a screw cap. (Classy!!)

I came back up to our room and resumed our incredibly noisy, loud, family party.  Kids were scooting.  Popcorn was flying.  Nurses and respiratory therapists were in like deer in headlights and out as soon as they could.  Actually, that is not true:  our RT for that night was one of 5 kids. He had just moved to NC from San Diego. He was so at ease with all of us and all that noise, I think we actually reminded him of home.   

And seriously, if you want to know just how messy we were, our nurse the next morning came in and tugged on the sheet of the bed, and multiple popcorn bits went flying around the room.  

You want to know what was even more amazing?  The next morning, I woke up and there was an unfamiliar bag on one of the "sofas" in the room.  I looked in it:  another bottle of wine, two glasses with napkins, SNACKS, and a beautiful cutting/serving board (along with a cork screw).  ANOTHER friend had dropped off more wine and snacks.  She did this at a reasonable hour, but after those two bottles of wine and my post-adrenaline crash, I was already fast asleep. We won't say "passed out," but I didn't hear anything.

Here is where I first felt guilty.  One bottle of wine delivered to the hospital is amazing.  Two bottles feels selfish.  Now here is where I feel grateful.  We left the hospital that day, dancing our way out the door.  But when I got home, it felt like I was supposed to jump back into the Working Mommy routine and have a typical Saturday doing chores and making meals.  It actually takes me a couple of days to get back to normal.  My mind still echoes from all the noises at the hospital.

So late that afternoon for Happy Hour, with real tears in my eyes, we opened up our second bottle of wine, drank it, and greedily ate all the treats. Well, most of them: she gave us a lot!  That first day out of the hospital is almost as emotional as that first day in. And sometimes, like the time Bridget was finally diagnosed with her Funky Lungs, it is worse than any time in the hospital because that is when I have to face all the information we received and emotion I've repressed in front of Bridget. That said, how could I possibly ask for help when we are out of the hospital?  Thank you, Allegra H., for making that first day back less stressful and I didn't even have to ask for help.  Sigh.  

We ended up buying Chicken Run on Amazon and I think the whole family would agree it's one of the happiest movies we've ever watched.

  

And our new (old) favorite movie quote "I don't want to be a pie. I don't like gravy."

Chronic Illness: Parents Part II

So this is actually the blog entry that's been rolling around in my head for the last, oh, six months since Bridget was diagnosed with her Funky Lungs.  That's the official name: Funky Lungs.  And her official cure? Coughing massive amounts of phlegm up into her mouth.  I saw it Thursday night.  It was gross.  Really gross.  But she immediately went to 100% oxygen saturation while on room air.  She had never hit 100% on any amount of oxygen support during this trip to the hospital.  I also finally got to see (up close and personal!!!) the crap clogging up her lungs when she gets her Funky Lungs.

So back to me.  This feels like a selfish and highly vulnerable blog entry.  It's about the effects of Bridget's ongoing and long term Chronic (but not Critical) illness on me and, well, my career.  Yes, Dave is affected, too, but he needs to write his own blog to process through his Midwestern emotions.  Both of them.

So what's the scoop? First, and strangest for someone who always honors commitments, everything is tentative.  Sure, we'd love to come over to dinner (as long as Bridget isn't in the hospital).  Sure, I can go to that academic conference (as long as Bridget isn't in the hospital).  Sure we can host a big party at our house (as long as Bridget isn't in the hospital). Sure we can have our regular lab meeting on Friday (as long as Bridget isn't in the hospital).

Yes, she's only been in the hospital 3 times last year (8, 10, and 6 days each), but there have been at least other 4 respiratory incidents that we were worried she might have to go back in.  Plus, for each hospital visit, she was sick about 5 to 7 days before.  Then there are the visits to the multiple doctors to see how she is doing afterward and how we should tweak our treatment protocol. Regular colds are two weeks of time spent worrying.  Hospital visits take around a month.  I'll do the math for you:  we've had about 6 weeks since April where life was "the old normal."

So tentative.  Everything.  And for the previous 40 something years in my life, deadlines were deadlines and they were hard. Commitments meant I would do what I said.  Now there's an asterisk to much of what I say I can do.

Similarly, I am behind on most of my research and teaching prep.  In the hospital, I can get up at 4 am and get some things done.  But then around 2 pm, I. Am. Done.  And Bridget doesn't willingly take naps anymore.  So I spend a few hours lying in the hospital bed while Bridget lovingly (to her) touches my face and asks me when I'm going to get up.  At home, I try to stay on a normal schedule, but checking her stats throughout the night don't make for a restful night's sleep. Hypervigilance, doncha you know.

And I've gained back nearly all the weight I lost last year, mainly because it takes me a while to recover from her hospital visits.  And by "recover" I mean drink wine and sleep longer.  Neither of those are good for running 1 hour early in the morning.

Finally, and most annoying, I don't have a lot of interest or energy for all the things that used to be so much fun.  Knitting, sewing, and gardening still sound appealing and exciting, but in a distant and remote way.  If I have a few hours free, I'm more likely to take a nap than finish up that sweater I started last April (when I was at a different weight and wouldn't fit now anyway).

So the things that make me feel good about myself:  exercise, teaching/mentoring, working on my research, and my fun stuff have all taken very big hits since Bridget's diagnosis.  I really don't give a crap about cleaning, so there's no "hit" there.  I just live in an exceptionally messy house.

And I don't know when it's going to change.  The big realization from this last hospital trip is that Bridget IS going back to the hospital. Our treatment protocol made massive improvements in her condition.  But she will still need oxygen support at some point in the future.  We're going to start prednisone earlier next time.  And I am (for the first time) enthusiastic about doing that.  But I'm not convinced that with another bad virus, it will still keep her off oxygen support and at best 4 or 5 days in the hospital.

And I want to stress again, Bridget has a chronic illness that is not life threatening.  My brain and my heart cannot even fathom adding in those emotional factors into the equation.  As one Mom in the chronic/critical illness club once told me: "You don't get to quit.  You don't get to sit down on the sidewalk and say I'm done with this. Somebody else take over."

So I guess we just figure it out, eh?  Important: sleep.  Not important:  Clean.  Need to figure out:  exercise, work, hobbies probably in that order for my mental health.

Chronic Illness: The Parents Part I

As I said yesterday, we now know that Bridget’s issues are not life threatening.  But we also now know after this visit that they are likely to be long term (more on that in another post). 

However, we didn't always know what her prognosis was.  It’s emotionally easier now, but it wasn't emotionally easy at all the first two trips to this rodeo.  Or even, for that matter, Christopher’s trip to the hospital. 

When we welcome parents to this club, or actually more like console parents when they reach this club, the first thing I try to share with them is to be gentle on themselves when they start experiencing the PTSD aftershocks.  I know there must be levels to this PTSD: finding out something’s wrong, going to the hospital, finding out something is really, really wrong, and further along the path to hell than that, which we have not gone 

But at every step on that path for us, there has been some hellish moment that I will not forget.

• ·       Driving Christopher to the hospital for a direct admit from the pediatrician.  I was an exhausted, scared, and completely drained automaton trying to reach Dave in a meeting at work.  Then I remembered it was Wednesday and they serve fried chicken and collard greens at Novant Presby Main and I distinctly recall being a little bit excited about that.  Silver linings kind of girl, you know.  In all fairness, should you be judging me, Dave had the exact same double reactions:  CRAP!  Oh, but fried chicken!
• ·       Bridget’s first trip to the hospital when the doctor noted her sats were really low, but the machine wasn’t beeping. The doctor’s look of panic sticks with me. The machine had not been hooked up with the hospital’s alarm system yet, a situation soon remedied, which also started a whirlwind of panicked activity from all the available doctors, nurses, and respiratory therapists. 
• ·       When the doctor told us that Bridget needed to go to PICU.  The funny thing about that one is that she immediately told us Bridget’s life wasn’t in danger, so this moment is not as hellish as it could be, but it is still held in a tender part of my soul.
• ·       Bridget’s second trip to the hospital where we went to bed at 2 liters of oxygen and woke up with her at 5 liters of oxygen.  I said “Jesus Christ” and not at all in a religious way.  This moment is probably the deepest and scariest one of all.  This is the moment I knew things were very, very bad. By the way, it’s never a good day to have the first words out of your mouth be significant cursing.
• ·       At the time, it wasn’t scary.  But now, looking back at it, when all (and I mean ALL) the doctors and respiratory therapists were bringing up cystic fibrosis during Bridget’s second trip.  This is the path to hell that we go on the off ramp.  Statistically speaking, we should still be on that path, but Bridget has such an incredibly rare illness that we were blessed enough to the tiny off-shoot.  Plus, you may recall, I kept licking her and she tasted dirty, not salty.

The crazy thing about this is how even just writing about this, I am accessing a very tender, soft, vulnerable, emotional, scary spot in my soul.  I get teary. I get sad.  I process through a little of those feelings---and I know everything is going to be ok!!  Yet, those spots are still there.  And, of course, writing about these moments is going to let me access them. 

So what’s the point of this blog entry?  (That question may have occurred to you earlier, but you can just shut your fried chicken hole!!)  It’s not a pity party, believe it or not.  I would love to help other parents when they get here.  I don’t think we have PTSD, although I do think we have residual stress and adrenaline (in spades), especially when we hear Bridget cough.  I think that’s normal for parents who have been anywhere along this path. It’s ok to be a bit hypervigilant when they get sick again.  It’s ok to get teary months and (I will assume) years after some incident on this path. 

Welcome to this crappy club.  Come over here and get a big hug.  

Chronic Illness: The Kids

I've been thinking about this post for a while, pretty much since we figured out that what Bridget has is long term and it affects our whole family.

I don't know if I can properly hit the right tone with how this affects us.  Bridget has a chronic illness, but the long term prognosis for her health is very good. This is not cancer.  It is a manageable respiratory problem.  But it appears likely that we are going to be hospitalized frequently.  The doctor rumor mill has suggested that our pulmonologist has already squashed the idea of home oxygen.  Squashed it and decapitated it like a mole under Fred's furry paws.

So it's not cancer, which is a whole other level of hell. Nonetheless, it's still very disruptive and stressful for the whole family.  Since Thanksgiving, Conor has been seriously worried about Bridget having to stay in the hospital on Christmas Eve. I mean, seriously worried.  We assured him that Santa would find Bridget if she was in the hospital.  As an aside, the nurses and docs shared that it WAS PACKED here on Christmas Eve.  Kids were shooting up from ER (or the "ED" as we who are Silver Elite know to call it) until the floor was full and they were putting kids in the observation room.  Fortunately, Santa did find all these children and their families and was extremely generous to them, a fact which still makes me teary.  (Thank you, Hemby Children's Hospital Elves who made that happen)

One afternoon this fall, on the way back from the bus stop, I told Conor that although Bridget has lung problems but she isn't going to die.  He let out a huge sigh, and said "OH GOOD!  I didn't know." That floored me.  When he comes to visit in the hospital and her alarm goes off, he moans, jumps up, and shouts out the number. At home, when we are monitoring her oxygen he gets upset at low numbers.  Even the kids' best friend and neighbor, A, gets upset when she sees low numbers***.

While Conor can at least express fears about Bridget, Christopher is all over the place emotionally.  He alternates from being incredibly smoochy to incredibly angry.  Christopher is not a bad kid.  But he does feel more deeply than most children.  We try to be as sensitive to him as he is to his surroundings.  I'll tell you what, though: that kid can hold a grudge.  Don't cross him because he'll still bring it up years from now. He really misses Bridget and me when we're in the hospital and he shows it by clinging to and ignoring us.  He's kind of a like a cat.  If I come home and find he's peed in my gym bag, I won't be too surprised.  

On our admission night, it was the first time I've ever seen Bridget have some adult emotions about what is going on to her.  She and I had been talking about and really hoping to stay out of the hospital.  The night she was admitted she was very stoic and very tired.  When we finally got to our room, she wanted to potty before she got into bed.  We went in together and shut the door.  It was the first time she had any privacy since we'd gotten to the ER (ED!  Ha!  We're insiders! Um.  Yuck.  We're insiders)

She got very quiet and whispered, "I hope.  I hope.  I hope Daddy comes to see me tomorrow." Her face turned red, she grimaced, her eyes closed and tiny, tiny tears came out of her eyes.  She has never cried about being here.  The only time she cried during a needle stick was when they took a arterial blood gas measure (which makes adults cry).  She looked very much like a tiny adult trying to deal with some real shit.  I gave her a big, big hug until she squeaked "You're hugging me too tight!  I can't pee!!"  And just like an adult who wants to cut a highly emotional moment, she made us both laugh.

That squirrel blows me away.

***Noting that Conor was starting to "take responsibility" for Bridget.  We have had several talks (our own instinct and coached by my colleagues) stressing that it's ok to be upset and concerned but that Daddy and I will ALWAYS take care of Bridget.  We are on top of this, and he can be worried, but he should be a kid.  It works, but we have to keep reminding him.  He's an incredibly empathetic kid.

Happy New Year From Team Squirrel....

Moose, Monkey, Kangaroo, and Giraffe!  What?  You didn't know we all had animal names?  

A friend of mine believes that whatever you do on New Year's Eve is what you'll spend the rest of the year doing.  I can guarantee you that on Dec. 31, 2012, none of our activities (which included a boatload of family dancing Gangnam style) suggested how much time we'd spend in the hospital. So I'm hoping Dec, 31, 2013 is just as predictive as Dec. 31, 2012.  We didn't family dance Gangnam style another day in 2013, so let's hope we don't spend another day in the hospital in 2014.

Bridget, despite being in the hospital for going on three days is doing very well.  Again, we started this episode with medical personnel being shocked, SHOCKED I say!, at how good she looked at how crappy of an oxygen level.  I am now considering this as a "data point."  My squirrel is pink, happy, alert, and talkative (!), even when her O2 levels suck out loud. 

And even though we came in at a low O2 (really, not that low--intake was 87% whereas I was seeing her at 84% asleep at home), she IS DOING GREAT!!!  Even when her first night nurse asked if she was "always this bad?" at 3 liters of oxygen  and 94% oxygen and I fairly shouted "THIS IS GREAT!!!! She's not in PICU and she's not on a rebreather.  She's FANTASTIC!!!"

We'll probably be in here 5 days and Dave and I are psyched about that.  Yes, I'm fully aware that other kids who seem much sicker get out quicker than we do.  But for us, 5 days is Bridget's Personal Record in the hospital when she's sick. It's also patently obvious that our treatment protocol for Bridget is working very, very well. We clearly have some room for improvement (maybe?  Will she always have atelectasis when she gets a bad virus and require O2 support?!).  Still, she is doing SO MUCH BETTER than before. Even with a likely 5 day stay in the hospital ((le sigh)).

So let me share with you what it is like to be a frequent flier at the pediatric ward in the hospital, because you are probably lucky enough not to experience it.  You may recall when the Squirrel first came in last April, many people thought they recognized us from Christopher's stay.  When we came back in April, folks were like "weren't you just here?"  Now, CNAs, RNs, and the Child Life specialists just stop by to say Hi! And catch up on how we're doing.  Seriously, it's a little reunion with our support folks and it's nice.  Dave says we are now Silver Elite members.

Even funnier, when the first teeny tiny room we were supposed to be assigned to was still dirty and we were reassigned to a much larger room, there was a not-so-silent cheer among the staff who knew us when we got a "family suite".  Indeed, this room is about the same size as my apartment in Greenwich Village, except there is no loft/bedroom and no fantastic view of the Empire State Building.  

Best of all, when our nurse walked in the room on Tuesday morning, the first thing she said was "Hello, Miss Squirrel!!"  Actually, what I should say is that best of all, when she started listening to Bridget's lungs, she knew exactly what they sound like healthy and what they sound like with atelectasis and immediately called for respiratory.  

Being at  hospital is not great.  Being Silver Elite at the hospital is not great.  But not having to explain every quirky detail of our daughter's illness, being liked by and feeling cared for by the staff, having folks be clearly bowled over by the charm of my daughter, that does not suck.  It's actually nice.

Happy New Year, y'all.  

Twins' Christmas Pageant

The twins had their Christmas pageant tonight.  Bridget was the "lead angel" and had actual lines.  Lines in which she rehearsed them as "DON'T FREAK OUT!  THERE'S A NEW BABY JESUS!"  While I thought that would have been adorable (i.e, viral) she stuck mostly with telling the shepherds "Don't be afraid!  There's a new savior born, Baby Jesus Chris the Lord.  Go to Jerusalem to find him!"

In the video, she has her back to the camera (must work on the diva moves, and Christopher helps her with her lines....because THEY ARE TWINS.  He took her role very seriously.  She did not.  :-)  He's the Shepherd with the mustache and red head covering.  Adorbs.

I must say, my favorite part of the play is when Bridget is finished with her lines and hamming for the camera. That's the girl we know.

Home Use of Our Pulse Oximeter

So here we go.  I've found that Dr. Google does include a lot of information out there on how parents should use, interpret, and/or fret about using a home pulse oximeter (pulse ox) to monitor one's child's oxygen levels.  I'm not professing to be an expert in this area and this is NOT a medical site, but I want to put this out there in the blososphere so that other home users can share what we know about pulse oxs with each other and hopefully get some support.  Here is some general information I've found on Pulse Oximetry at home.  Also, most of the links here will take you to a medical publication or an expert opinion.  I'm happy to add more as you share them.

Because I am a professor, I currently think about oxygen saturation levels (ox sats) as "grades":

97-100%:    A
95-96%:      B
92-94%:     C
90-91%:     D
Less than 90%: F

One might note we are not grading on a curve here.

In any case, my perceptions are that an A or  B is fine.  Everyone wants an A, but a B is perfectly fine.  And even a C is not all that bad, even though, personally, I freak out when Bridget starts hanging around 92%.  It's the D and F grades, however, that need some attention.

HOWEVER, IT'S MORE COMPLICATED THAN THAT.

Here's the tricky part:  To continue the analogy, you have to determine if the grades are a "pop quiz" (not a really big deal) or a "midterm" (which could require some remedial attention).  As a high achieving student (!), I personally don't like any time Bridget gets a 92 or below.  I know I said 92 is a "C" above, but it's borderline and I don't like it.

Still, a dip down to a low pulse ox should not be a cause for alarm.  It's when the sats are persistent that one is supposed to worry.  What does persistent mean?  From what I can tell from talking to my friend, a former respiratory therapist, and our pediatrician there are many criteria.  And honestly, I don't know if they should be considered together or if one is enough.  First, if the ox sats stay below 90 for 5 minutes or more, that's the time one should run like a bunny to the ER.  I've seen some places suggest calling 911.  We live close enough to the hospital not to worry about that.  Also, respiratory rate is important here and a rate above 40 absolutely means get expert medical attention NOW.

So that's the worst case scenario.  What about the others?  Here's where I get confused.  My pediatrician says that if my daughter's ox sat hovers around 91 but occasionally (or frequently) moves up to 92, that's ok.  I don't feel like that's ok.  We haven't had that scenario yet, but I'm thinking that must mean it is really and truly time for oral prednisone, but probably not oxygen.

The more common scenario we've had is that Bridget dips down to 91 (or 89 or 8-freakin-6), but then bounces back up to 93 or 94.  It's really hard not to panic when that happens.  In fact, the first time we saw 86 is when we went to the ER, where she subsequently stayed at 99% for our whole visit.  One cool thing is that our new pulse ox has an alarm on it that you can silence for 30 seconds.  So I now know if I silence it 8 to 10 times, it's time to worry.

Also, now what I would do with a low number like (whether she was awake or asleep), I'd switch fingers to see if there was something funky with that finger (we often get lower readings on her index as opposed to her middle finger), and I'd likely use our old pulse ox  to see if we were also getting the same reading.

Home pulse oxs have an accuracy rating of +/- 2%.  And while both of ours have tracked with the ones at the hospital and doctor's offices, they still sometimes don't always agree with each other.  So, if we were getting really low readings on one, I'd like to see if the other one has a similar score.  Also, I no longer freak out if one has a low reading and the other one is high, because it's apparently very difficult to get a false high number---the pulse ox can't report more O2 than is actually in the blood.

So that is what I know.  Persistent 91 or below on multiple fingers with multiple pulse oximters requires some attention.  I am open to learning more and sharing it here.  Note this is also for children only.  I know squat about adults, but I'll include that information here, too, if anyone is interested.  I'm also hoping this keeps us out of the hospital and off oral steroids for good.  Here's hoping it helps you, too.  

Update #1: Some insurance companies will pay for a home pulse oximeter.  It sounds like it could be a useful avenue to explore.

Words I am afraid I will forget

Bemember, you can't put your nernaid in your pookpag.  She lives in water and you can't put water in your pookpag when its your back.

Parental PTSD Part 753

So, I'm chatty today.  I've gotta get this out somehow.

So, um, yeah.  PTSD from a child's illness.  It's a thing.  It's nice to have some validation, but it's not a surprise to anyone who has had a child whose been in the hospital.

Here is where we are with that, based on yesterday's hospitalization.

1)  The beep of the pulse oximeter alarm. Ugh.  I forget about it until I hear it.  And because there are a lot of children in the peds ward with respiratory illnesses, I heard it almost as soon as we got there.  It's a punch in the stomach that I can do without.

2)  Fortunately, Bridget did not have any alarms go off, but the child beside of us did. And every time it went off, I could imagine the parent in there straining his/her head to look at the number on the alarm and praying that it stops, the number goes up, or the nurse to arrive and up the O2 level. It's not fun.

3)  As soon as we got home today, I went into vacuum cleaner mode, eating every piece of high fat and/or salty food I could find as well as wondering if 11:30 am is too early to open a bottle of wine and drink by myself.

The good news about this trip with Bridget is that what we are doing is working.  They did an X-ray and she did not have any atelectasis.  YAY!  She did have junk spread around her lungs but nothing like what happened in June.  So Yay!  Yay!  Yay!

An ever so slight boo in that I realized as we left that we don't know where we are in this virus's progression, and, thus, where we are in her mucus-y lungs:  beginning, middle, or end?  My vote, along the lines of Churchill:  "Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning."

Blergh.  At least Dave is home now and we can open up that wine.  

Well, This has been an Interesting Week

I am exhausted.  And by "exhausted", I mean that the bags under my eyes have exceeded their two carry-on limit and my head is about to collapse forward on the keyboard so I can take a quick nap.

EXPECT ANOTHER WITTY BLOG ENTRY!!

So what the heck happened?!?!?!?

Bridget started her cough on Saturday morning and we started the hypertonic saline treatment and everything (i.e., her oxygen saturation levels) were fine and dandy.

Then Monday night, while she was going to sleep we had enough funky readings to start her shaky vest Tuesday morning.  But all was fine at school and before bed Tuesday morning.

Then Wednesday morning at 4 am, she woke up coughing.  Dave and I felt around the dark in the bed trying to find the pulse oximeter (I had put them in my pajama bottoms thinking--in my sleep--that was a good idea), we checked her O2 levels, which were stable but around hanging around 90-92.  These are not good levels.  We asked her and she agreed to do a shaky vest at 4:15 am.  Her O2 got back up to 97.

Yay!

We went back to bed.  And while they started to nod off, I noticed the numbers started slowly slipping back down to about 91 but stable.  That isn't a great number, but it's a number I can wait to see the doctor in the morning.  I got up to do some work.  I came back in to check on her and she was steady at 88.

88 is bad.  Not brain damage bad.  But 88 is the level my RTs (respiratory therapists) say you really need to start oxygen.  Of course, I have mom/RT mentors (cough, cough, Liz, thank you) who have taught me there is a difference between hanging at a bad number (bad) and dipping to a bad number (OK and probably normal).  I watched Bridget.  I sat down beside Bridget.  She slept soundly for at least a few minutes ad her numbers held steady at 88.  I went to tell Dave downstairs that she was 88.  I came back to the room and she was 86.

Crap-Effing-Shite.

I threw on my clothes, came back to her, and she was back up to 88.  I grabbed her and told her we were going to the hospital.  When she was getting her coat on, Dave said she was back up to 94.  I didn't really care because that 88 scenario was playing in my head.

We got to the hospital. I told them the story.  And they hooked her up to the pulse ox in ER.  She was 100% O2 saturation.  What the fuckity fuck?  I told the nurse everything, she was supportive.  I told the doctor everything and he thought I was an idiot.  (I'm not)  He also said "Well, it looks like she might have an ear infection."  (She doesn't).  I asked the nurse if we could just let her calm down for a few minutes and see if we can get her O2 to do what it had just done 20 minutes ago.  She said Yes, and turned off the lights.  One minute, the doctor walked in, turned ON the lights, had the nurse give us a ginormous dose of oral prednisone, and told us it was time to go.  Neither the nurse nor I were amused.  REALLY!?  REALLLLLLLLY!?  I just told you she was at 86-88 O2 and you think I am so stupid that I'm in an out of  ER in 45 minutes?!?!?!

We get back home and within, I don't know, 30 minutes, Bridget was back to 92-94 O2.

I talked to our various pediatricians, pulminologists, and w(h)ine partakers and thought we'd give it a bit of time to see if the prednisone worked before we did anything.  I also told our ped there was no way in H-E-Double-Hockey sticks I was going back to ER.  If there was a problem, I wanted a direct admit from the pediatrician's office.

I *KNOW* ER docs see a lot of stupid people.  I know that.  I also know that at 6 a.m. in my comfy and old pants and sweater with no makeup and graying temples, you would be surprised to learn that I am not as dumb as I look.  (Or as old:  Thank you ER doc for asking if I was mom and then joking about me looking like the Grandma.  Actually, suck it, you old poop*).

ANYHOO, we/I/someone decided to see what would happen during Bridget's nap with her O2 levels and we'd decide then if anything needed to be done.

Her nap was fine.  She had one dip down to 93, but for the most part, she was hanging between 94 and 96.  Not bad numbers and certainly not worth going to the hospital.  So when she woke up, I called the pediatrician to give an update and ask about the antibiotics for the ear infection I knew didn't exist**.

While I was on hold, in my (mother) mind, all hell broke loose.  Bridget started coughing crazily, and her number dove to about 90-92 with no upticks.  I was on hold for 6 minutes and it stayed at that level the whole time.  I say "mother mind" because I've also developed a "nurse mind" on oxygen sats and may not have been so worried about that.  But Mama mind freaked.  I got in to see the doctor right away, carrying BOTH our home pulse oximeters with us to see how they compared with the doctor's office.  Bridget stayed at that level the whole time over.

We got in quickly and they immediately hooked her up--92 O2, consistent and stable.  My pulse ox was actually registering a little higher than theirs, which freaked me out even more.  Nonetheless, this whole experience was starting to seem an awful lot like what we had seen before.  So our pediatrician called in a direct admission.

I call Dave.  I get to the hospital.  They check us in.  And WOULDN'T YOU KNOW:  she immediately registered a 100% ox saturation and pretty much stayed between 97 and 99 for the next 16 hours--until we were discharged. And WOULDN'T YOU KNOW, both of our pulse ox's registered either the same number or 1 off the hospital's pulse oximeter the whole time, too.  In fact, we had one de-sat on the hospital pulse ox, but I told the nurse that OUR pulse ox stayed at 98 the whole time so I didn't believe it.  She agreed.

What the fuckity fuck, part II?

So I felt very over-reactive to have gone to the pediatrician and freaked out, although she absolved me by saying this was a team decision.  Dave gave me the best absolution for spending the night in the hospital unnecessarily by saying the alternative--her desatting in her sleep overnight at home--would have been much, much worse.

Still.  I have decided that I'm going to write a post on what I've learned about how to use a home pulse oximeter that will hopefully be helpful to others.  I'll link to it once it's done and I'll update it when I hopefully hear from others.  These devices are getting more common but there is precious little info on how the lay person should effectively use them and when to freak out and when to wait another hour.

Meanwhile, I'm trying to figure out what day it is, where we are, and if Bridget's current cough scare is at the beginning, the middle, or the end.  I am pooped.

*I get saltier when I am this tired.
**I didn't tell any of the doctors about his diagnosis, and everyone else commented how nice BOTH of her ears looked.

Camping with the cautiously pessimistic

We had a blast camping at the beach in relatively chilly weather.  I am freaking exhausted, but I have a very busy week coming up, so this exhausted blog update will have to do.

First:  cold camping is not nearly as bad as I thought it would be.  Granted, we were only down to the upper 30s, but it was not the uncomfortable pain and crying I thought it would be.  (And seriously, I'm talking about myself, not the twins.  Or Dave.)

By the second morning, waking up at 48 degrees (and calm winds) was comfortable enough to not wear a jacket.  I'll be honest though:  waking up the 3rd day at 48 degrees and strong winds was freakin' ash cold.  Brrrrrr.

Also, I just really love camping.  This was our first group camping with about 6 families and three flocks of children of youngish, mid-elementary, and teens ages who all hung out and played with each other and impressed this adult with their conversation.  My strategy with kids--including college age ones--is to let my freak flag fly. They find that interesting enough to talk with me and sometimes even "hang out."  I figure their parents will figure it out soon enough (i.e., I'm not a normal adult), and I might as well cut to the chase and get to know the interesting kids quicker.

As for the Cautiously Pessimistic:  that is how I describe myself with Bridget.  The phrase I'm supposed to use is:  Cautiously Optimistic, meaning that I should think good things are going to happen, but I'm not going to get too excited about it.  I, on the other hand, am cautiously pessimistic:  I'm pretty sure bad things will happen, but perhaps it will be better than I think.

So, one of our neighbor children got a really bad cough two weeks ago.  Then Conor got the same cough a week ago.  And Dave and I have been hovering over the twins for the last week waiting to see if they would cough and we would need to cancel the trip.  Hooray, they did not!!!

Until Saturday morning, when both woke up with some serious snotty noses and wet coughs. Saturday was actually fine and not so many coughs.  More coughs Saturday night and Sunday during the day and substantial coughs last night and pretty much ongoing for Bridget today.

So was it sleeping in the cold or the onset of this crappy ass cold/cough that is going around?  I vote cold.  But I'm not sure it matters.  Bridget's numbers have generally been good until today.  She's asleep right now bouncing between 95 and 96.  Those are not bad numbers.

But, you know, I'm cautiously pessimistic.  So we'll see.

UPDATE Continuing on the cautious PESSIMISM: last night were Bridget's worst continuous numbers we've seen out of the hospital, but I will CAUTIOUSLY add that they were clearly better than the hospital numbers because we'd have gone last night. In any case, this cold is the real deal. We'll see how she handles it.  I did a mild amount of chest PT overnight to help her out.  Starting the shaky vest this morning.    It's amazing how much the coughing helps get a 92 to a 96, which is a very, very good thing.

Faculty Coach Follow Up

That was a lot of fun.  As Dave and I sat on the porch having a glass of wine/beer (as the case may be) on late Saturday afternoon, I told Dave that was one of the best days of my life.

He cut me some serious side eye, so I clarified.  It was not as good a day as marrying him or having Conor or bringing the twins home from the hospital.  But it was up there with going to the Mondrian Hotel, getting into the Skybar and drinking the Dom Perignon that Grant Hill had bought for my friend and me, or having our wedding announced in the NY Times.

We felt special and it was fun.  As we were doing laps around the field before the game, we saw some of my students who called out to me.  Definite highlight.  We saw and talked to Wilson from a huge variety of media around Charlotte.  We ate dinner Friday night with extremely polite players of the team and Conor watched most of Iron Man 3 with them beforehand.  (The twins were watching the Lorax on my iPad, but the scenes in the movie were too much for them and we left)

Yes, it would have been more fun if we had beaten UNC Pembroke.  I had no idea beforehand that Pembroke was doing really well this year, so. Booooo.

But it doesn't matter. I'm still in love with Football at UNC Charlotte.  As soon as I can figure out why my computer is blocking me out of the my pictures file because I don't have enough "permission" (?!), I'll post some of our fantastic pictures from the day.

We're still a bit pooped from this weekend.  I have no idea how the players and coaches do it.

Niner nation, y'all!  Go enjoy yourself some UNC Charlotte Football love.

Faculty Football Coach for the 49ers

So this is the personal account of being chosen as the guest Faculty Coach for the first homecoming football game for the UNC Charlotte 49ers.  You can read my professional thoughts about football at UNC Charlotte here.

The gist of my reaction?!  IT'S SO FLUFFY!!!

I am not cool and I'm not going to pretend I'm cool.  I am so excited about this!  The kids are practically vibrating and levitating they are so excited about it!  Even Dave is a bit keyed up, in his own Midwestern way.

So here's the scoop:  earlier in the semester, an email went out describing an honorary "faculty coach" position for each of the home football games for our inaugural football program.  I, along with several hundred other faculty, volunteered.

Imagine my surprise and IT'S SO FLUFFY delight when I found out Tuesday, I'd been chosen for the upcoming game. WOOHOO!!!

On Tuesday afternoon, I took a tour of the Judy Rose Football Center along with the other faculty coach.  Then I picked up Conor at the bus stop (in Myers Park), surprised him with the news, and ZOOMED back to the football practice fields at the University to watch the team practice.

It was way cool.  We talked to Coach Lambert (the head coach) for a bit.  We watched the players do the things the players do when they practice.  We learned about how we are modeling ourselves after UT San Antonio, another university in a big town that is successfully starting up a football program, and we generally felt pretty special.  Conor, taking after me, was completely uninhibited in showing his delight in being on the practice fields.  He was thrilled when the head coach high fived him.  When one of the players said "Hi!" to him, he swooned.

We are not cool people and it is not our aspiration to be such.

Tonight (Friday), the whole family is going to watch a movie with the football team at the Student Union. (Who knew the Student Union had a cinema?!) And then we will eat dinner with the team at the main student dining hall.  Tomorrow, we watch the team do their "traditional" 9:49 walk down the sidewalk to the stadium and then watch the game, cheer, and otherwise feel pretty darn special.  We also have some pre-game field passes that we are looking forward to using.

It's going to be a long, fun Friday night and Saturday.  And I have no doubt the twinnies are going to have a few meltdowns.  But IT'S SO FLUFFY!!

Faculty, compared to employees in larger for-profit corporations, get so few perks in our work lives.  No one tries to woo us with free tickets to the Panthers, Bobcats, Wells Fargo Golf Championship.  We don't get free cookies/popcorn/muffins from the insurance brokers or other sales people trying to win our business.  Free coffee from the student honor's club is rare enough (once ever that I can remember?!) that it gets faculty worked up and in a happy mood, even if it is stale and cooled off by the time we find out about it. Leftover bagels from a dissertation defense is still worth an email to all the faculty.

But THIS.  THIS EVENT Freaking ROCKS.  And the kids think I am an extra-special, cool mom for getting this honor.  Indeed, Bridget stood up on her chair and shouted YOU ARE SO ROCKING ON!!! at dinner on Tuesday night.  I don't mind being the hero to the kids.

I am psyched about this.  I even dreamed about it last night.  The game is on local TV this weekend.  Look for me, the middle aged, overly excited professor in green cheering on the team and being thrilled about being a 49er.

Handling It

Apparently, we are handling it.  "It" being Bridget's atypical asthma with hypersecrtion (aka, wet asthma).  We finally visited the real expert in the pediatrics pulminology field today and come some more words for me to search on.  They are good words and I have already found a few things.  The good news, all signs continue to point to Bridget's problem as isolated from a variety uhderlying causes of autoimmune, structure, reflux, allergy problems and most importantly, cystic fibrosis.  We can pursue these avenues if we want and we may, for peace of mind, but nothing indicates a that her asthma is a bigger problem than "asthma."

It was kind of cool to discuss the other issues and get a reasoned response on allergies, reflux, CF, etc explaining to me why he didn't think it was these causes.  It was really logical, explained kindly, and nice to be respected.

And the good news is that although we are getting some pretty crap ass O2 sats---87 on a check this morning--I can get her back up to 94 with her shaky vest.  (87 sucks for O2 in case you were wondering)

So the marching orders are:  keep do what we're doing. Start the shaky vest earlier; we waited a few days this time.  If/when RSV goes around daycare, keep her home.  If her sats go down, but we can get them back up, yay!  If her sats go down and we can't (i.e., hanging in the 80s) go to the hospital.

Of course, I am also exhausted because some lost soul ended up outside our house at 2:45 screaming for help and that he wanted to go home.  I don't want to sound heartless, but he sounded pretty whacked out and violent.  In fact, Dave and I think that his friends  must have dumped him out in the neighborhood because if he'd walked from the main drag, he could have easily gotten help without scaring the bejeesus out of everyone.

Also, I think I woke up slightly before Dave when he first started ranting and thought I heard him say something like "I've got a gun!" and something else to do with his head. He may not have and Dave didn't hear it and I know enough about eyewitness testimony (and how much it sucks) to doubt what I heard was accurate.  That said, it is exactly what I believed I heard when I ran down to get the phone and OH MY GOD(DESS) I was shaking so hard I could barely dial.

When we got back upstairs, the twins asked what was going on.  We told them a man needed help and the police were going to help him.  I asked Bridget if she heard what he said and she replied, "Yeah! He was freaking out!!!"

Also: I hate boys.  Christopher and Dave fell back asleep almost immediately. Bridget and I lay awake for a while, kissing and snuggling and calming each other down.  Her O2 sats were 99.  What?  You don't think I'd check them!?

The Ways of the Interwebs Announcement Gods

All it took was me writing on Facebook some version of "It looks like we're going to skip the hospital with this cold" to have to make the decision twice in one day, when the numbers were looking really bad, whether to go to the hospital or not.

We decided No and there are a couple of reasons for this.

1) We made the conscious decision to see if we can keep Bridge off prednisone AND out of the hospital.  So we decided in the morning that we wouldn't even go to the sick clinic at the peds with the first bought of low numbers. They wouldn't have put her in the hospital but they would have put her on prednisone and that would be 4 doses in 8 months.

Oh! Wait a sec.  Why did we even get worried in the morning? Bridget woke up at scale 11.  You live life on an energy basis of 1 to 10.  Bridget lives at 11.  All the time. Constantly.  As soon as she wakes up until she falls asleep.  Or actually, until her numbers start to tank a bit.  But sometimes not even then.

It was time for her treatment, she was at running around at ll, and I convinced her to stop for a sec on the sofa to "read her finger" as we put it.  (And sometimes, she gives me the right finger to read. Nod. Nod. Wink. Wink)  It started at 93 and then went down.

93 is not an O2 number that makes me happy.  But going down makes me less so.

2)  Thank goodness for my Mom mentor who is/was a respiratory therapist, Liz, to help us through this.  Liz and I "met" through Salon.com's blogs 11 years ago.  We've kept in touch through blogs, Facebook, and twitter and no, we haven't even met "in person."  I don't know though. I feel like after knowing someone for 11 years and following their lives and ups and downs and day-to-day experiences more closely than I do some of my neighbors, I consider her Someone I Really Know, and clearly someone close enough to start IMing and texting about what was going on.  She gave us more info to look for, clear "go to hospital" criteria, and Bridget's numbers came back up after treatment.

They came up and stayed up at really fine numbers, until night time--after most of her treatments and while we were watching the family movies.  And then they tanked hard for *us*.  She was between 91 and 88 for 5 minutes. I packed a bag for the hospital and Dave realized we hadn't done the shaky vest.  We did the shaky vest. She figuratively showed us which finger we could measure from now on.  And her numbers came up to a fine 97.  Monitoring overnight, she was often at 99.

3) So here's what we think is going on.  I think we are handling this cold at home.  She's got stuff moving around her lungs and occasionally it clogs up some portion or another of her lungs before she gets it ALL the way out.  (Happened like that at the hospital)  That's when we get the bad numbers. But then she moves it up and out and she's doing better.

I don't know if we'll always be doing this "well."  I can foresee a really bad cold that gets ahead of us on moving the junk out of her lungs, but I think we can do this for the most part.

I will tell you of two new stress signs I've developed. One is a need for more sleep.  And I mean massively more amounts of sleep.  The second is that it's harder to focus on recreational activities.  I cannot run for crap lately and it's because I can't keep myself focused enough to use my good tricks when it gets tough.  It'll be fine though.

Once Bridget's cold regimen becomes the new normal, it won't be so hard to just do it and take all her numbers in stride, until we shouldn't.

But I should stop tempting the gods by making proclamations that everything is ok and we've got a handle on this!!

Chronic Squirrel

We're starting to figure out what life in the near term is going to be with an energetic, rambunctious, lives life-at-11 girl whose lungs fill up with gunk when she gets even a mild cold.

The first cold in August occurred during her "well-visit" and the doctor was concerned enough about the wheezing she heard to give Bridget prednisone.  It cleared her up in 12 hours. Yay!!  Third round of prednisone since April....BOOOO.

Sunday morning, Bridget woke up with that croupy cough every parent knows so well.  For most folks, it would just signal a cold coming up.  And for the  most part, that's what we've had.  Except for a couple of hours in  the late afternoon and early evening in which her O2 stays around 93 with a few dips down to the upper 80s.  It hasn't stayed there long enough for us to go to the hospital, but it stays in the low 90s long enough for me to sleep with Bridget with her monitor on until it stabilizes at 95 or above.

ALSO, I have turned into an automatic night monitoring machine, waking up every hour or so to fish around the bed for the pulse ox, find it, read it, be reassured and go back to sleep.

HOWEVER, 98 and 89 look awfully similar when they are upset down and you are half asleep.

ADRENALINE, BABY!

Dave and I are both trying to figure out how to negotiate our career ambitions with a child with a chronic illness.  So far, we're not back in the hospital.  Yay!  But I find it hard to make long or short term plans when I'm pretty sure I'm going to spend part of the day putting together little piles of food and medicine and tea (I really like tea in the hospital) in case I need to throw them together to run out of the house.  Or to direct Dave to gather together if B and I are already there.

I know it's all going to be fine.  And next year at this time, we'll know SO MUCH MORE about how to handle all of this and when to worry and when to let it ride.

It all gets better. Sometimes it gets worse.  But it gets better.  Eventually.

I'm tired.  I can wake up 5 times a night to monitor B, but I can't really write as witty a blog afterwards.

Scatological Lesson

From our family to yours:

You should not toot while walking up the stairs.  Because if you realize at the top that you left something at the bottom, you will essentially end up tooting in your own face.

You are welcome.

Ack! Phht! Phht! Ack!!

Well, that's a descriptive title. But it pretty much sums up my feelings in the aftermath of a (new) doctor's visit today.

The twins were supposed to have their 4 year old well visit today, but I essentially waited to schedule it until they were healthy , and the only opening was 4 years and 2 months.  UNFORTUNATELY, the appointment was at 9 and I thought it was at 3.  Whoops.  So they missed their well visit.  No big whoop-dee-do. We can reschedule.

Except Christopher had that 103 fever 10 days ago?  Which developed into nothing?  And then developed into a cold?  And then he woke up with his "asthma cough" as we call it, yesterday morning and today.

OK.  Still no problem.  His oxygen sats are fine.  It's the Squirrel that concerns us.  We've got his treatment regimen down pat.  But so far, the path seems to be: when he gets asthma symptoms, she goes to the hospital.

So we wanted to see our doctor just to get on her radar that our journey down the path? It has started.

Well, our doctor is very popular and was fully booked when we showed up at the wrong appointment time.  So, instead we saw Doogie Howser, the new doc in the clinic.  Remember how I wish I had that "I Know Stuff" button when I go to the doctor's office?  It's even more the case when the doc is new and not familiar with one's family or the particulars of one squirrelly Squirrel.

So what did we learn today? Since I am always LOOKING FOR THE FREAKIN' BRIGHT SIDE, this is what we learned:

*Do not use the term "atypical asthma."  Use "atypical reactive airway disease."  It's the same dadgum thing, but medical professionals get stuck on the asthma part and forget to focus on the more important atypical qualifier.
*Throw in "albuterol insensitive" as soon as they start talking about treatments.
*She presents "like cystic fibrosis" gets more attention than she presents with atelectasis.

And Dave made this suggestion:  Doctor's are told that if they hear hoofbeats, look for horses, not zebras.  I appreciate that.  However, we are dealing with elands here and helping them understand that sooner rather than later reduces my need for an extra anti-anxiety medication.

Bleargh.

I Think We've Got this Timeshare Thing Down

So this is a quick post while it's still on my mind about taking advantage of timeshares that show up on travel sites for a good price.  This is the second time Dave and I have stayed at one and the third time we've taken advantage of the sales pitch for good prices on Tourist events.

So we've stayed twice now at a suite in a tourist area.  We didn't know it was a timeshare until we got there, but the hints were that they were more like apartments or condos than hotel rooms--i.e., both places had full kitchens. In fact, we ended up eating in the room--cooking nice meals--instead of going out.  Some tourist areas have nice restaurants and others don't.  We're cheap and I'd rather save my money for a good restaurant, so we cooked in.  (Hint #1:  Bring your own knives and a big pot/pan if you have a large family)

Both also had nice pools and structured activities that appealed to the kids.  This was truly one of the best parts of both places: kid activities, family activities, adult activities, playgrounds, family friendly pools.  In fact, where we just came from had such great pool areas that we spent about half of our vacation hanging out there!  (Hint #2:  if you stay at a resort like area, the days off from touristy stuff can be fun just hanging at the hotel)

So here is the most important thing we want to share: Don't buy your tickets to parks, locations, etc, before you arrive.  Instead, we suggest Hint #3:  Go to the timeshare sales pitch and just say no.  (If you really like it, of course, say yes. But for us, we're cheap.  Also, just to point out the yearly HOA fee for this particular timeshare was two times more expensive than the one week cost for us to stay using an online travel service.  But again: Cheap.  Like camping. YMMV.)

HOWEVER, after you attend the sales pitch, you can get MASSIVE discounts on the attractions---like up to 50% off of tickets. Feel free to search for discounts for some of these parks, attractions, etc.  We've seen even the best online discounts are anywhere from $2 to $10, which ends up being at most 10% off.  50% off is much more appealing to us.

So anyhoo, pictures from this trip to follow.  But I wanted to get this out there for folks before we get too far back in the swing of every day life.  Renting at timeshares:  Good options for bargain hunters.

Cucumber Soup (or Dip)

I have adapted the original recipe (and the picture) from the NY Times which you can see here.  Of course, it takes up 1 (or 2) of your free NY Times articles per month, so I'll tell you what I did.

3 or 4 cucumbers
2 cups yogurt
2 cloves garlic
2 tbsp chopped mint (or so)
Olive Oil

Peel the cucumbers
Seed the cucumbers (or not).
Salt them (or not). And let sit for 30 minutes, then rinse them. Salting them makes them less watery.
Smush the garlic up a bit
Put it all in a blender or food processor and let 'er rip until it's as smooth as you want.

The recipe calls for you to salt/grate the cukes and then mix everything else separately and then mix all together.

I have enough cucumbers that I can try a couple of different ways until we get it right.

As for freezing, we're going to put them in glass mason jars (leaving 1" or so room) and freeze them.  To thaw, we'll leave in the fridge overnight.  I'm sure it will separate a bit, but a quick stir and "fresh" cucumber soup!!

I've made this a couple of different times, a couple of different ways.  It's really good, easy, and healthy!!

I Am Feeling *Much* Better

One of the things about being in a funk is that you don't know how deep and funky that funk is until you get out of it.  And then you can look back and go, "Whoa!  That was a deep funky funk, and I am SO GLAD to be out of it."

In fact, I am so glad to be emerging from the post-second-hospital-trip-for-Bridget funk that I am using "you" when I write which usually drives my crazy because I don't actually mean You, dear reader.  I mean ME.

ANYHOO, Yeah!  I feeling like me again for the first time in, oh, 6 3/4 weeks (i.e., since June 5) when Bridget went into the hospital for the second time.  And honestly, the reality of everything didn't even hit me until she got out, so it's been a short 5 1/2 week funk.  BUT IT HAS NOT BEEN FUN.  Fun-ky. It does not mean "Fun in Kentucky."

The funk did not originate from actually being in the hospital. For the most part, two out of our three hospital visits have been funky free.  It was this last time, when things got so bad and weird so quickly that Funky made an appearance.

Ok.  Can we stop with the funky theme?  I'm not a skilled enough writer to keep that going.

What has been tough is knowing that Bridget's atelectasis is probably going to come back.  And we may be back in the hospital again.  When I write that (outside of the pit of funk), it doesn't seem that bad.  But for much of the time since her diagnosis thinking about that has been very scary for me.

I think my emotions and my rationality have finally called a truce so that I am more secure that we will stay on top of this when she gets a cold again. We'll be doing all her treatments and we, along with her teachers, will be monitoring her oxygen levels to make sure she's at a healthy level.  Really, that's all I've been waiting for--for my emotional side to stop hyperventilating enough to trust my rational side that we will always be on top of Bridget's colds.  We may have a few setbacks (sort of like learning about Christopher's asthma means), but we are going to be on top of this. Eventually.  Mostly.  Much of the time.  ((pant, pant, pant, fluttering of hands in front of face))

And of course, my even keeled Midwestern husband even has a few mild reactions like drolly noting when Bridget awoke with a runny nose yesterday, "Most parents don't panic when their daughter gets a cold."  We, on the other hand, evaluate the amount of snot in her nose, make her cough and evaluate how "wet" it is, monitor her oxygen level, and start her back on saline and her shaky vest.

So yes.  Mostly better.  MUCH better actually. Slowly but surely, we are getting back to normal.  And that feels awfully nice.

Me

Yes, this is a blog about my life from my perspective, so it seems exceptionally meta-narcissistic to write a post specifically about "me" but AHHHH!  Here we go.

Boy, it has been tough recovering from Bridget's last hospital stay.  The physical stress symptoms I am experiencing put me right back in grad school, just before my qualifying exams, when my boyfriend figured out he was gay.  (God bless him, he's a really good guy, but I wish he had told me sooner)

That was by far the most difficult period in my life and one in which I have been able to use the multitude and magnitude of my signs of stress as a standard for how every other difficult time since then has been better.  I am not at that level again, but BOY OH BOY am I close.

I don't want to drink alcohol (which is effed up in a variety of ways since that could probably help relieve some of this stress).  I don't want to eat anymore (since my first day home's carb and fat-fest binge).  And what food I am eating is merely waving hello to my insides as it passes through.

On the plus side, I don't have hives---well, more hives than usual ("usual" being the hives that developed after Bridget's first hospital trip two months ago).  And I'm not so sleepy that I don't want to get out bed; I've honestly never had that problem.  But I'm having a hard time exercising because of this constant nausea I feel.

The question is Why?  Bridget is better.  She is out of the hospital.  Everything is going to be ok.

The answer is because I am not fully convinced that everything is going to remain ok. I like information. That does not mean I want to know the future; I am NOT that stupidly naive.  But I cannot find anything on google or in the medical literature on the type of atypical asthma Bridget has.  The one good article a friend sent on atypical asthma discussed persistent cough and non-responsive asthma, but even that is, apparently, more common than atelectasis-as-asthma Bridget has.

Thinking over the last 7 months, it seems obvious to Dave and me that Bridget's first episode of this problem was during the fall.  But she was able to cough everything up then--with a horrible, tiny squirrel rattling cough.  Also, it seems to us that each event is getting worse.  We made it to the hospital BEFORE she got really sick this time, thanks to the pulse ox.  And yet we stayed longer and were on more oxygen for a longer period of time.

YAY for the medicine regimen we're on now and YAY we have a diagnosis and YAY for the blessed pulse ox.  But I feel like we were doing a lot right before this last episode and it was still rough.

Folks, I don't expect you all to read this and to not dismiss my worries as that of a semi-psycho mother.  I fully acknowledge that is what and who I am.  I keep repeating that we have everything at the house now to keep Bridget from getting sick and/or we have enough knowledge to get her in the hospital quick as bunnies to get help.  It still doesn't relieve this mama's fears of some roadside bomb that we're going to have to pass to see whether our current protocol is working well enough to keep her out of the hospital. Or worse.

I would just like to know of 1) some research about people like Bridget or 2) some other parents' experiences.  And we can't find either. We've been searching the asthma parents boards and can't find diddlysquat and adults with this issue do not have as severe of a problem.  (Aside: yay!)

As someone who has a honorary (in her own mind) medical degree in infertility and who can frequently diagnosis a friend's fertility problems before her own doctor, not being able to find any information on this diagnosis is obviously quite stressful.

I know what I have to do is just wait and see. And hopefully drop a couple of five pounds.  But it's still sort of sucky for right now.

Hospital Postscript

This is our third time "recovering" from a hospital visit.  I have learned a few things.  One very important one is that when I get home from a long stay at the hospital, I am so full of adrenaline that I can drink a substantial amount of wine and not really have much of a reaction.  It's not something I want to do frequently, but there it is.

I also want to go ahead and apologize to everyone I know in "real life" who reads this blog because I am going to repeatedly tell you the same stories, diagnoses, reactions, etc. I am sorry.  But it helps me get this albatross off from around my neck to share the burden.  (I have no idea if that is the correct literary analogy.  I recall it from high school English, but the wiki entry does not support my interpretation)

ANYHOO.

We are home and recovering from/processing Bridget's diagnosis.  She is on a very strict regimen of medicines for the duration.  I'm hoping we can get down to one (pulmicort) after our follow up visit to her pediatric pulmonologist, but it is absolutely clear that we cannot slack off on this or she could end up back in the hospital.

And that is what is freaking me out.  Christopher's asthma regimen is working.  He gets sick. We go into sick-meds regimen mode and he coughs like crazy but is fine. His lungs remain clear enough to cough the junk out.  I just don't know if that's going to be the same thing for Bridget if the key characteristic of her asthma is creating mucus that then plugs her lungs up and cuts off her oxygen supply.  We got into the hospital and she was on oxygen before this illness even got "bad" this time.  I know we have to "wait and see" but this is not really one of those instances with a large margin of error that could comfort a mother.  Is the pulmicort/albuterol/hypertonic saline going to work to keep her lungs from plugging up again the next time she gets a respiratory virus WHICH YOU KNOW NEVER HAPPENS TO YOUNG CHILDREN IN DAYCARE?

And what is making me insane(r) is that her form of atypical asthma is so rare that I can't google it and find any information, much less another parent/family who is going through the same thing.

Google crawlers:  please send all your atypical asthma children with atelectasis here so we can commiserate with each other and share our experiences.  We know that there are "several" cases of this form of asthma in the Charlotte metro region (5? 10? Out of the 2.2 million people who live in this area??)  Do you see why it makes an information hungry mama get short of breath, dizzy and really, really wanting a Valium because of the lack of  information of other's experiences.

Also, I've already alerted our other mother friends that I will be relying on them for emotional support and medical strategies.  When I start whining about this, I think of my friend who has a son with Timothy Syndrome (there are 40 cases WORLDWIDE of that) or my other friends whose children have asthma.  These families are strong advocates for keeping their children healthy and their medical providers informed.  I'm a big fan of peer and step ahead mentoring, so apologies in advance for showing up on your doorsteps looking for advice and a hug.

So, there you go.  Pardon my repetitive statements in advance.

We Have An Answer....

And it's quite good!!

First, if you didn't see the comment in the previous post, please go and read it and continually weep like I have over 65 Roses.  And then we'll share that our cystic fibrosis test came back negative!!  We never thought we'd have traditional CF, because it's not presenting this way.  But there is such a thing as atypical CF, which is much milder and often less life threatening but still "CF."  So we were happy with our negative skin test for (mostly) ruling that out, too.

So what is it?  A form of ASTHMA that presents with unusual symptoms.  Both our new pediatric pulmnologist and the hospital pulmonologist came to this conclusion separately and both follow "several" cases of this in their offices.  It's rare enough that any one pediatrician's office is unlikely to see it, but common enough that they have a couple of patients with it.

As an aside: atypical CF is so common that every pediatrician likely has a patient with it whether they know it or not.  So Bridget's form of asthma really is not very common.  ((An aside: however, it's not as rare as plastic bronchitis, which scared the bejeesus out of me when the doctor described it.  I can't find a simple link to it, but basically the lung makes secretions so thick, it looks like the patient inhaled gum.))

So weird asthma!  WOOHOO!!  Objectively, I know that's not a great diagnosis but subjectively we think it's good enough that Dave and I did a happy jig.  (Well, I did. Dave is an effusive midwesterner. I think he blinked twice in happiness.  So we both did a happy jig in our own way) What is different about this:  Bridget doesn't wheeze like a typical asthmatic.  Her lungs always sound clear at the docs, even in the hospital.  When she has an asthmatic reaction, mucus plugs her  tiniest lung parts so her lungs cannot exchange oxygen with her blood.  Indeed, the first time they have an incident, it is often diagnosed as pneumonia. Dave and I both sighed with relief at that news:  this asthma may be weird, but it's absolutely the textbook case.  The doctor also said an underlying bacterial infection or autoimmune issue is unlikely because generally Bridget is a very strong, healthy little girl who all of a sudden gets very, very sick.

Also, I felt like a proud Mama when one of the first things the pulmonologist said to me was how glad he was that I had gotten that pulse ox. I am lame enough to like it when an authority figure compliments me.

So the treatment protocol is going to be different than for Christopher.  Another characteristic of this is that Bridget's asthma does not respond to albuterol.  She'll be doing daily medicine in an inhaler for the duration and then we she gets a cough, we'll also treat her with a hypotonic saline solution--essentially a neti pot for her lungs.

IT'S ALL GOOD NEWS, PEOPLE!!!  We are thrilled.  We may be here a few more days as she gets this stuff out of her lungs and they heal.  But we've got a diagnosis objectively agreed upon by two high end pulmonologists and it's treatable.

WOOOOHOOOHOOOO!!!!!

Blergh but Yay!

I cannot think of a more clever title than that.  Randomly pick some other blog entry and marvel at its brilliant title instead. Lie!

So the yay is that we've kept Bridget out of the PICU and she is getting better. The bad news is that she's become the star patient of the pediatrics ward.  And although her star status as being the most adorable, precious, funniest child patient in the hospital makes me glow, the hospitalists/pediatricians/PICU docs/RN/RT continued focus on WHY THE HECK SHE IS SO SICK is not nearly as fun.

True story #1: Yesterday while the hospital doc ("hospitalist") and the nurse practitioner (NP) were examining her, Bridget broadly grinned and made some funny comment  and the NP, I kid you not, exclaimed "SHE IS SO PRECIOUS!"  I know people say nice things about one's children all the time, but I really feel like Bridget truly charms the socks off everyone she meets.  She is the definition of a naturally charismatic person.

So we have a diagnosis:  atelectasis, which our doctor kindly spelled out for us on our hospital whiteboard because I can't even pronounce it. And so I could play Dr. Google. Originally they thought it was just in the bottom of her lungs, but it's actually all over: top, bottom, middle, both lungs.  Basically many small alveioli have closed/collapsed around her lungs and no oxygen has been moving from her lungs to her blood.  That is why we've had to use massive oxygen levels just to keep from "getting in trouble." That's as euphemistically as close as I can get to writing about some of the bad things that could have happened.  THANK GOD(DESS) FOR THAT HOME PULSE OXIMETER WE BOUGHT!

Now the question is *why* does she have atelectasis.  It could be "just bad luck."  But two trips to the hospital in two months for over one week are so statistically unusual that "bad luck" is unlikely.

What we have ruled out: post-op problem (not operation to begin with!), tumor (x-ray/CT Scan ruled out), major lung deformity (x-ray.CT scan ruled out), underlying cardiovascular problem (way cool echocardiagram ruled out which also ruled out that Bridget has had a long term problem with her lungs), auto-immune problem (less likely b/c rock solid normal inflammation blood test thingy), fungal infection--from the chickens, for example (same blood test, another measure says highly unlikely).

What is on the table:

1) Cystic Fibrosis:  Although I continue to lick Bridget night and day and she does not taste salty, the doctors unfortunately will not take that as a valid clinical test.  We already tried one sweat test, and despite the child ending up soaking wet, they "didn't collect enough sweat" to actually do a valid test.  When the doctors question the tech's skill at this test, we know there is a problem.  That said, we're not leaving anytime soon and we'd have to do it outpatient at the other hospital so we're going to try again before we leave.  It won't completely rule out CF, but if it's positive we'll know. My prediction: if it is CF, it's a milder "atypical" case.  This can happen and it would be the best of an absolutely worst case scenario.

2)  Uncoordinated cilia in her lungs that do not move the junk out of her lungs correctly. Obviously, if she inherited something uncoordinated, it came from me.  A bronchoscopy (they stick a camera down her lungs and take some pix and some tissue samples) will determine that.  We're hoping to have that before we leave.

3) Smaller airways or other lung anomalies not detected on the CT scan.  Again, the bronchoscopy will give us info about any other abnormalities in her lungs.

4) some other things I cannot recall but are not horrible and the bronchoscopy can find.

Oh, and BTW, when the cardiologist stays after the exam and strongly suggests that one should work hard to figure out why she is having this even to the point of explicitly saying "if you don't get answers here, you need to go to Chapel Hill or Duke" one gets a good impression of how seriously all the other medical professionals are taking Bridget's illness.

So where are we?  Currently, I am sitting by Bridget's bed while she sleeps, yet is catching up on her daily word count by making various noises as she dreams. She has mentally had a rougher time on this visit.  She has broken down a few times and called it unfair to be here.  That is probably the worst part.  Although when they took blood out of her artery, that freaking hurt too.  But my little bunny squirrel can take physical pain.  It's the unfairness of being this sick and having to cough up massive amounts of shit out of her lungs and wear oxygen masks and have needles in her arm and smokey medicine blown in her face 8 times a day including when she sleeps that is not fair.  She finally got back to a nasal cannula yesterday, but it made her nose bleed and we had to put the mask back on. Not Fair.

Knowing the protocol of when they'll let a patient on oxygen get out of here, I think we're looking at Thursday or Friday.

The boys are doing ok.  Christopher is having a rougher time than I'd like.  He is not old enough to articulate what he feels.  He wants to be here but 4 year old boys don't often sit and talk and "catch up" as much as an adult would like.  Bonding comes from interactions and it's hard to interact on the pediatric ward.  He does, however, let me kiss and kiss and kiss him, particularly at the intersection of his cheek and his jaw which I think is the best kiss spot on anyone in the entire world.

Conor is doing well, but I missed celebrating his last day of second grade.  And today is his First Day of Summer Vacation and I'm not there to share the beginning of the best time of the year with him.  He told me he missed me and my snuggles.  And then he added that he missed the games on my phone, too.  I know he was (semi-)kidding but I don't have the emotional reserves to not have my feelings hurt by that.

I really don't think this is CF.  I hope the bronchoscopy gives us some answers.  I hope Bridget doesn't continue to beat me at Go Fish and the memory games because that is starting to get embarrassing.  I hope we get out of here soon and never see this place again.

UPDATED:  They cystic fibrosis test is negative!  But every time I think of the 65 roses tradition, I cry. Thank you, Rebecca.

Squirrelicious and Moose-a-yummy

There is only one sign that Bridget is sick:  She sleeps 12+ hours at night and still takes a nap.  This is a child for whom sleep is an evil enemy and the only sign that she is sleeping is that she is not talking.  And when she hears any movement at night or in the morning she bolts out of bed.  So sitting by her bed while she is still sleeping 12 hours after we went to bed, it is the only sign I see of her being sick.

Again, every medical professional who sees her starts the conversation with "She just looks so healthy!  She has so much energy!  She is so adorable/cute/funny/sweet/precious, I want to eat her up!"  OK, so I added that last part.  But she is a very healthy, pink squirrelly girl with crappy ass lungs that have almost sent her to the PICU for the second time in 2 months.  The nurse let that slip today and I had a semi-freak out.

Blergh.

In better news, we had the twins' birthday celebration here yesterday.  Can I let the love for my son, my moose-a-yummy, shoot out of my heart right now? Well, I'm going to anyway.  This clever, sensitive boy was so focused on his sister yesterday.  On *HIS* birthday!! What empathetic skills this child shows.  When Dave showed up with a surprise bag of presents before our pizza party birthday celebration, Christopher insisted they were all for Bridget.  We had to convince them that they were for him, too.  (We are going to have another welcome home/birthday party with a few more presents when B gets home.  Plus the "kid party" later on. C had his party at daycare yesterday and B will have hers at daycare next week.)

In any case, we had a fine birthday celebration with the twins with pizza, presents, and cupcakes generously sent to us from our niece, Elyse.  We are saving the cake the hospital sent us for today. Yes, the staff here at Hemby has been AMAZING for Bridget to make her birthday special.  Every single staff member from the janitorial to the nutrition to the RTs to the Nurses to the CNAs to the ER doctor to the Child Life specialist to the volunteers brought a little something (and sometimes a very big something) for Bridget yesterday.  Everyone wanted to make it special for her.  Thank you, Hemby Children's Hospital.

They even moved us from a tiny room to a jumbo family room (they have quite a few of them here) with enough space for the whole family to be here and move around.

Our pediatrician came by this morning. Love her as she called us yesterday on her day off (and now I have her cell phone number--evil laugh--bwahahahahha) to check on Bridge. Our ped is going to start looking for underlying causes to being in the hospital and nearly in PICU twice in 2 months. The good news is a congenital heart problem is ruled out from her NICU EKGs. We tried to do a cystic fibrosis test this afternoon, but didn't get enough sweat.  We'll have to see if they repeat that. Fortunately, both Dave and I have tested negative for cystic fibrosis.  It's still possible that Bridget got it from a genetic mutation on her own, but we kissed and licked her and she didn't taste salty.  She certainly tastes like she could have a bath, but she's not salty (a strong common cystic fibrosis sign, says Dr. Google)

There are not a lot of other things it could be.  But two visits to the hospital for multiple days including  PICU is bothersome.

Fourth Year Off to a Rocking Start

I'm having a hard time stringing together much besides I'msotiredI'msotiredI'msotired.

Bridget is back in the hospital and considering she spent last night on 5 liters of oxygen (the max outside of PICU), we're not going home anytime soon.  Actually, today they've switched to an oxygen mask, hoping to ween her off of THAT and back onto nasal oxygen tomorrow.  All of this really just means: NOT GOING HOME SOON.

So why the f*ckity f*ck are we back in the hospital?  AND ON THE TWINS' BIRTHDAY?  Good question!  We don't know why!!  The  good news is that because we bought the pulse ox yesterday and saw such horrible readings, we've jumped off the path that would have taken us back into PICU.  The bottom of Bridget's lungs are "closed up" now but last time, we didn't get into the hospital until most of her lungs were "closed up." So win for us.

But why this over-reaction to a chest cold?  Preemie lungs still affecting her 4 years later.  She's hopefully going to grow out of it.  And we're likely to be freaking out many times until she does.

IN ANY CASE, I am tired and wired at the same time.  I'm waiting for the boys to come over for our first birthday celebration tonight.  We'll have another when Bridget gets home.  And then the big party, which we're obviously going to have to postpone for a few weeks.

Everything is going to be fine.  It just really sucks to be back here.  I will say that there is some bittersweet consolation for me that 4 years after I gave birth to her, I can hold onto and love her in the hospital on her birthday.  On the twins original day of birth, I only got to see them for about 30 minutes that day due their time in NICU and my recovering from the c-section and my pre-eclampsia.  And I didn't get to hold them for the first 4 days of their lives.  So on this trip, I am hanging on pretty hard to her when she (and I) need it.