Harlie's DLB

Hi!  I know it has been another long time since my last post.  Starting to write after a break is very difficult.  But, I really want to work this blog back into my life.  I feel like my mind and soul were healthier when I wrote more often.  So, I'll start with how Harlie is doing and her most recent medical experience.

She was supposed to have a DLB (direct laryngoscopy and bronchoscopy - a scope of her airway) in June, but she got sick two days before, so we had to reschedule.  Between Harlie's schedule and her doc's schedule, the next day we could do was September 13th - a Friday.  Ack!  As if her medical crap isn't scary enough! Trudging forward...

She's so good.  I really can't say that enough.  She isn't scared or whiny and doesn't complain AT ALL about being in the hospital or going into the OR.  She asked me what she was having done and I explained and that was it.  I really don't get how she seems totally fine with whatever.

For the first time ever, I did NOT like our pre-op nurse.  Keep in mind I have interacted with more nurses than I can count - hundreds!  I have never had an issue like this.  It was as if she wanted to catch me making a mistake.  WTH?  We have a "go bag" which has emergency trach stuff in it that has to be with Harlie all the time.

Here is what is in there:

a new trach, same size as what she wears (5.0) .
a new trach, a size smaller (4.5) just in case I can't get the 5.0 in.
gloves (which is kinda dumb, because in a real emergency, I'm not going to waste my time putting on gloves - her breathing is way more important, but whatever, I have to have them in there).
new trach ties
a pair of scissors
saline
lube, to put on the trach
a disconnect wedge (this is used with a ventilator - which we don't have, yet I am supposed to have it in my bag because someone knows better than me what I will use in an emergency).  Can you tell that this particular item ticks me off?  Granted, it is small and doesn't weigh anything.  So, I just leave it in there - I have to pick my battles.  But, OMG - sometimes I just hate being told what to do all the time.

Anyway, usually nurses ask me if I have my go bag and we put it on her bed and it goes with her into the OR.  And that's it.  Not this nurse.  She asked me to open it, which I did.  Then she asked me to show her the trachs, which I did.  Then she asked me to OPEN each box to make sure the trachs inside match the boxes.

Okay, can I just tell you that I've had a trached child for a long time now.  I've done that already, I promise you.  Well, anyway, her whole demeanor towards me was just crappy.  Plus, she kept on calling me "Mommy."  Hold up - let me tell you about that for a second.

I have accepted that most nurses call me "Mom" - they deal with a lot of patients and parents, so I get that this is just easier for them.  And really, when it comes to taking care of my kid - I don't want to make that job harder than it needs to be.  Plus, they don't call me "Mom" at the beginning of every sentence or question.  Usually it is to get my attention.  Once they have my attention - it isn't necessary to say "Mom" anymore.  When Harlie is in the CICU, the nurses usually learn my name, or heck, they already know it from a previous stay. This may shock you but, Harlie's kinda well known there.  Haha!

Anyway, in a pre-op situation - we are there for like an hour (hopefully).  They come in ask a shit ton questions and then the anesthesiologist comes in, the doc comes in, the OR nurse comes in, I sign consent, then someone comes to get her and they leave.  It is usually VERY busy and relatively quick - so there is no way the pre-op nurse is going to try and remember my name.  She sees a lot of patients and parents in a day, and I'm just not going to expect that.

However, it is a very small space - and I'm right there, looking at the nurse - there is NO need to say, "Mommy" EVERY FREAKING SENTENCE OR QUESTION.  I can't stress this enough.  NO NEED.  You have my attention.  I know you need information from me.  CAN'T YOU SEE I'VE DONE THIS ONCE OR TWICE BEFORE?!?!?!

Holy cow, I really wish I had some street cred, here.  Fast pass?  Frequent flyer points?  Something. Anything.

Deep breaths.

Okay, back to what I was saying.  She asked me to open the freaking boxes for her. It was like this, "Mommy, where's your Go Bag?"  "Mommy, open it."  "Mommy, unzip it."  By this time she had said "Mommy" like a thousand times and it was in this tone like I had screwed up and was in trouble.  And frankly, I was sick of it.  So, when she said, "Mommy, open the boxes." I said, "Knock yourself out" and put the Go Bag on her bed and walked away.  Then I watched her struggle to open them with one hand because she didn't want to put her clipboard down.  Whatever!

So unnecessary!

Then she asked me where the suction catheter was.  I went to the suction machine bag (which is always where Harlie is, and which is where the Go Bag is kept) and held up a gallon ziploc bag full of suction catheters.  She looked at me like she wanted one in the Go Bag.  Now, can I just say how stupid this is?  There is always a suction catheter ATTACHED to the suction machine.  The suction catheter is pretty useless without the suction machine.  In a true emergency, when you can't get either size trach in - you can technically use a suction catheter until you get to the hospital or get more help (kinda like breathing through a very small straw).  BUT, her ENT gave me an ET tube, which is used for that - so I have a sterile, unopened ET tube in her Go Bag.  Therefore, I don't need a stupid suction catheter in her Go Bag.

But, again, pick my battles.... I hand her a new suction catheter from the ziploc bag.  She takes it, and looks at it strangely.  Then says, "Mommy, is this a used one?"  OMG.  No.  The paper thing isn't broken and the end is still attached.

New

Opened

She was still suspicious.  For real.  Sometimes I don't know how I do this.  So, I take a deep breath, and then explain that home trach care is different than hospital trach care.  Fucking duh.  I can't use what they use in the hospital because all suction catheters used in the hospital are single use and are completely exposed.  While home catheters have a plastic sleeve so it can be used more than once.

She leaves and returns with a hospital suction catheter and PUTS IT IN MY GO BAG.

Sigh.

Another person that comes to see us in pre-op is a pacemaker person (usually an NP, I think).  They hook up her pacemaker and make adjustments as necessary for whatever procedure she's having done.  This particular NP was new to us - and we totally hit it off.  We were chatting and I was answering her questions and all was great.  Then she asked me to sign something and when I took A SINGLE STEP towards her - the pre-op nurse exclaimed, "Mommy! Don't!" and put her arm out to stop me and motioned that I shouldn't leave Harlie on the bed and walk away.

ARE YOU FREAKING KIDDING ME?!  Harlie was a week away from being THIRTEEN YEARS OLD.  She's not going to fall out of the bed.  She is well aware of herself.

This nurse was the WORST.

Honestly, I'm stressing myself out just remembering all this.  And I'm just telling you the highlights. It was really so, so bad.

So, on to how the DLB went...

Dr. Preciado said that he couldn't get the scope in through her nose, which is odd and not good.  So, he's never been able to get the scope down her mouth.  Her cervical spine is fused in one area (was like that when she was born) so she can't tilt her head back (this also poses a big problem for showering with a trach - since she can't look up at the ceiling).  Between that and her small jaw, accessing her airway via her mouth is impossible.  So, they put her under by attaching it to her trach and once under, they put a very small scope down her nose.  It is concerning that he couldn't get it in that way.

He is hoping that it was due to inflammation.  If it isn't inflammation, it is could be scar tissue, which clearly, would be worse.  So, he put her on Ciprodex ear drops - but we give it to her via her nebulizer.  Crazy, but he says it works for inflammation.  Well, cross your fingers it works for Harlie, too. So, twice a day she gets Ciprodex and saline nebulizers (along with her Budesonide and saline nebulizers, also twice a day).  He will repeat with another DLB in January to see how her airway looks.

Thinking about her actual aiway is really difficult for me.  By difficult, I really mean painful.  We never had any airway problems before two years ago.  She had access to her airway problems - but never problems with her airway itself. Now, she's got airway problems.   She lived for over SIX months with her trach in her cricoid cartilage - instead of her trachea.  I'm afraid it caused permanent damage and I'm terrified that we won't be able to fix it.

And when I start thinking about that, I have to force myself to stop.  And I have to say to myself that we have to tackle one problem at a time.  So, hopefully, these nebs will help with that "inflammation."  After her next DLB in January, we will start focusing on her upcoming jaw surgery in March in Boston.

I have so much more I want to share - but I'm out of time for now.  I have a super early morning tomorrow.  I'm getting up and heading to Sedona, Arizona to meet my special needs moms friends.  This is the same trip I took this week last year.

So, hopefully, I'll post again next week.  Thanks for checking in!

Much love,
Christy xo