Sunday, January 26, 2014

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."

Sunday, January 05, 2014

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.

Friday, January 03, 2014

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.  

Thursday, January 02, 2014

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.

Wednesday, January 01, 2014

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.