Wednesday, June 19, 2013


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.

Sunday, June 16, 2013

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)


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.

Wednesday, June 12, 2013

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.


Monday, June 10, 2013

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.

Friday, June 07, 2013

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.


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.

Thursday, June 06, 2013

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.

Wednesday, June 05, 2013


I cannot say my daughter's nickname in my head without happily thinking of this clip from Up. In fact, whenever I am thinking of my squirrel to myself, I often just repeat that scene to myself again and again until I laugh and move on.

Yes, I crack myself up telling myself jokes and making inside references.  To MYSELF.  I have NEVER claimed to be sane.

ANYHOO, it's been a shitty couple of weeks for twin illnesses over the last 2 weeks.  I think I've been to the doctor 6 times in that period, but honestly, I am too tired to count that high.  Christopher got it first and now Bridget has it (it being some viral respiratory shit) in a manner that is VERY SIMILAR TO WHAT HAPPENED IN APRIL.

I spent every waking moment last night (and there were a few) timing and counting Bridget's respiratory rate.  She was holding steady around 36.  40 is my (new) cut-off to go the ER.  Normal is 28.  She's been running a fever for 4 days and her breathing and coughing is getting worse.  We went to the doctor today and even had chest x-rays and YAHOO there is no pneumonia.  However, her oxygen saturation rate is 94%.  That is not normal.  And, indeed, all the RNs' advice from the hospital is echoing in my head:  if she doesn't get that oxygen rate up, she's going to poop out breathing too fast/hard and get  really sick. AGAIN.

So, god(dess) bless my husband:  he is buying us a pulse ox on the way home so I can check my moose and squirrel's oxygen level when they get sick.  I like objective data.  It takes out the subjective post-traumatic worry I still have from their hospital visits and lets me know when or if I should be making noises to get them more assistance.  

And maybe I can sleep a bit more?  I would really love to sleep a bit more.