Wednesday, October 20, 2010

Revolving door

That's what I think this hospital stuff is.  Because as soon as we get out, we are back here soon enough.  Today was M's bronch and GI scope. 

Purpose of the bronch:  see if the dialation from May held.  See if her airway is improving.  Dialate further.  Outcome of the bronch:  airway did maintain some of the dialation from May.  In May, they couldn't get a 2.5 mm flexible scope down her airway - the same they used on her the night she was born.  Now, they got a diameter of 4.3.  More than I was expecting.  She does have a decent granuloma (random bubble of scar tissue) growing in her airway that will have to come out at some point, but it's not urgent right now.  Follow-up with Doc Q next month.  We will repeat the bronch/dialation every 3-4 months.

Purpose of the GI scope:  see if there were any glaring issues that could be causing her recurrent spitting.
Outcome of the GI scope:  Fundo is still in place and looks pretty decent.  Nothing obvious that is causing her spitting.  Will wait until we see the results from the biopsies say.  Could show inflammation that could cause spitting.  If not, we go from there.

Ok, now that all the medical crap is out of the way... Not to shabby of a day.  Today, other than the constant headache from yesterday (we'll deal with that later), was ok.  After working 1/2 day at school, off to the hossy.  M was cute and happy as ever.  I have to say it was "nice" not being so nervous.  We've gone through both of these procedures before, so not much "unknown" to deal with.  The tylenol made a mess, but now it's pretty easy to change out her g-button gauze.  And back she went.

I don't know why I was so anxious in the waiting room.  It wasn't nerves, but I was on edge.  So thankfully, we had visitors to keep me occupied.  My mom was there - of course!  (My dad would have been too, but he was at our house with J.)  My sis and niece showed up too.  With Starbucks.  Dude, that stuff is better than heroin!  Ok, not that I know that from experience, but you get me.  And Phyllis, a former NICU mom with me, came to check on us.  Her sweet boy Logan is at another hossy here in town, and she came by to see M.  Man, I didn't realize how much I missed her.  It's nice to have another mom that has gone to hell and back a few times understand the sarcasm and humor that accompanies it all.  And she brought M a purple horsey.  :)

The whole ordeal is a bit like deja vu.  In the waiting room:  Steph and Jodi from RT.  Anthony the pastor.  Doc H from ortho.  Doc O and Julianne from genetics.  Doc P from neurosurg.  Doc C from peds surg.  Crappo Doc L from neuro (we won't see him any more).  Then we get assigned to 412 which is where we were in June, and next door to where we were with my niece 2 weeks ago.  Our nurse was my niece's nurse on that visit. 

Coincidence?  I think not.  I think we are simply here way too much.  37 visits to be exact (according the pre-op nurses).

Thursday, October 14, 2010

Money needs to grow on trees.

Whiny mommy.  This time, it's about money. 

When David and I decided to have kids, we knew money would be tight.  Food, diapers, wipes, doctors' appointments, etc.  What we didn't realize was that there are tons of "hidden fees." 

We didn't know that J would require special bottles that cost $9 each.  We didn't know that he would have SO many doctors' appointments (plastic surgeon, dentist, genetics, ENTs, pedi, neuro, optho, audio, PT, OT, feeding specialists....), thus the co-pays.  We didn't know that we would have to buy him special shoes - the $10 ones from Walmart just won't cut it with him.  We didn't know that insurance was going to deny his leg braces because it's "developmental."  (Don't get me started on they hypocracy of that one.  We'd be here all day.)  We didn't know J would still be in diapers as he approaches his 4th birthday.

We didn't know M would spend her first 5 months in the hossy.  We didn't know insurance would deny the claim for using nitric to save her life because it was not a proven drug (asshats - I'll show you the proof.)  We didn't know we'd be at the hospital so often with her that we'd learn the coffee-shop lady's name.  We didn't know she'd come home with so many machines.  We didn't know that said machines would use SO much energy (our electric bill has nearly tripled since she came home).  We didn't know we'd be so used to so many medications that we can spell them out for the doctors/nurses.  We didn't know transportation would become an issue, as my car cannot fit them both with all the bags they require.

We didn't know how financially taxing children could be.  We struggle from day to day.  I must thank God for medicaid, as we would really be in a world of hurt without that.  But sometimes, it's just not enough.  How do you explain to people that you need a new car?  Not just because you are tired of the one you have, but because you need the space for your children and their machinery.  How do you explain the need for a bigger house?  Not just because we are tired of this one or don't like it, but because with all of the kids' "stuff," we are literally tripping over their machines and contraptions.  Which bank is going to listen to those pleas?  Which utility is going to understand a tripling bill just isn't in our budget?  What do we cut out?  Soup for J?  Yogurt for him?  After all, those are some of the only things he'll eat.  Or do we go without a med?  How about the mortgage?

Ugh.  My kids are worth every cent, every headache, every argument, every smile.  I would do it again in the blink of an eye without hesitation.  And I don't mind going without all the fancy crap most moms my age have.  David is great about not requiring much for himself either.  But for once, it would be nice to NOT have to worry about how to pay for their necessities.

Wednesday, October 13, 2010

Don't go there. DON'T go there!...She went there.

And yet again, her timing is impeccable. 

M is scheduled for a bronch and GI scope next Wednesday.  All fine and dandy.  They want to see if her airway dialation from May held at all and perhaps get some sort of idea as to why she is yet again spitting like a pro-wrestler.  Her specialty move?  Regurgitating formula down your shirt from a foot away.  You become so distracted by the slightly sweet smelling, soggy mess, that the Princess has time to make her move for her favorite toy.  She hides her HME.  But I digress...

So anyway, she needs to be healthy.  Someone let the cat out of the bag.  The girl caught on to the plan.  And now, she's coming down with whatever her brother has. 

J got sick last week.  Fever of over 102.  Green crap coming out his nose.  A cough that has the neighbor's dog curious.  Lovely nurse just kinda went "oh, that's not bad for a kid his age."  David then asked about his seizures.  "What?  He has seizures?  Let me check."  Oy, remind me to only call when our regular nurses/docs are in office.  They want to see him.  Strep culture is negative.  But do you think the on-duty doc would do a flu swab?  Of course not.  That would make sense, especially considering we have a medically fragile preemie at home.  Someone needs a dork-slap.

So, J is working on getting better.  He throws in a seizure at school just to keep everyone on their toes.  And M, enthralled with her brother as always, has decided she wants to be just like him (minus the seizures, thank God.)  All last week, she had more secretions than usual.  But last night, the girl went yellow.  Not just a little.  Not for one suction episode.  Yellow.