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.


Rebecca said...

So if it's cystic fibrosis you need to call all family and friends and have them bring her a combined total of Sixty-Five Roses. Because 65-Roses and Cystic Fibrosis kinda sound alike. Each year on her diagnosis date.......65Roses.

Carroll said...

Really really ever-so-glad there will not be a need for that many roses in her future, Anita! But, crying out of sheer relief/fatigue/frustration? Entirely permissible!