Out of Sync

I'm interrupting my normal chronological posting of Soto events.  I am behind on those, thanks to a computer on the fritz...

So our house has been in disarray for the last few weeks (the computer only being one of those things).  Of course, the first thing that comes to mind is the actual physical disarray of household objects (including, but not limited to, toys, dust, our mail pile that seems to have a heartbeat since it grows as soon as you take care of it, Halloween decor that now needs to be put away already, etc.).  However, I have come to mean we are "out of sync".  Besides the aforementioned items, we've had Halloween, a birthday (that's fun, at least!), our normal scheduled chaos (work, school, dance, AWANA, errands), and a sick little Moo-Moo.  Now, of course I have photos and blog posts to follow RE: Halloween and Ellison's birthday.  But here's the scoop on poor Bubba, and my frustration with physicians (as much as I love and respect them).

I cannot even remember what I've mentioned in past posts about Marek's respiratory issues this fall.  But he started his 3rd round of needing nebulizers about 2.5 wks ago.  The last 2 rounds were short-lived, thankfully.  Well this time has been a doozy.  We started him on albuterol again for wheezing and labored breathing, started him on the daily Pulmicort nebs (which he's continue now through the winter), and he still was not doing great.  A trip to the pediatrician after about 8 days of this, because he was getting worse and I was becoming a maniac chasing him around the house with a stethoscope constantly,  and he was given an antibiotic to cover him in case it was pneumonia, and we could both hear what sounded like pneumonia.  They chose not to do a chest xray because we were going to treat him anyway, and hey, let's spare him the extra dose of radiation.  I was cool with that.  They gave him another breathing treatment in the office for low oxygen levels (but don't get me started since the sweet tech doesn't know how to accurately get a level despite me politely pointing it out).  We were given a Rx for Orapred (steroids), and said I could wait a couple of days to see if he was getting better before starting it. After 1 more day, he was still struggling pretty good.  So we did the steroids.  The few days following that, Marek was still struggling with breathing, especially in the evening, to where he needed back-to-back treatments.  Now, we do this all the time in the hospital setting, but our pediatrician won't allow this, and always says we have to call if it comes to that.  So over the course of the next few days, we had to call the after-hours line to inform them and get the okay to do extra treatments and just stay home and watch him.  This goes on for another week.  Just not getting any better.  We are highly frustrated and concerned.  He's on 2 types of nebs, an antibiotic, and completed a steroid course.  Why is he not better?  So I take him back to the pediatrician again, who says it's likely viral since the antibiotic doesn't seem to be making a difference.  She tests for RSV and it was negative.  She then finally says she's going to refer us to the Asthma and Allergy Clinic for testing for various things.

So, this past Monday, we have our appointment.  Now Marek has been playful, eating well, etc. throughout all of this, just sleeping very poorly.  There are several times throughout the day where his lungs sounds clear, but his breathing isn't normal (rapid, slightly labored).  After dealing with this for a couple of weeks (and see previous note about freak Mom chasing around baby with stethoscope constantly), I've come to know that his lungs just get "tight" enough to where they sound clear, but the second you give him a treatment it works everything up again.  So the very nice specialist basically blows off my concerns.  She hears the whole story, and tells me she thinks he has a couple of things going on: laryngomalacia (no big deal, just "floppy" upper airway structures in babies) in addition to reflux.  I can buy this, but I'm not buying that reflux is causing his breathing to be constantly bad like this for so long.  I keep asking/telling her my concerns, and each time she tries to politely explain them away.  She says his lungs sound clear as a bell, to which I explain that they do this, but his cough is still super thick and his lungs sound off & on all day long.  Again, she tells me he looks too healthy for there to be anything wrong, put him on Prevacid, and see her back in 6 weeks.  Feeling uneasy and unsatisfied a little, but willing to try it.  The next day, after yet another night of horrible sleep and terrible breathing, I pray out loud to God to give me some wisdom, to guide me, and if there's something else I should do to make if very obvious to me since I second-guess everything.  I am just beyond frustration.  I'm tired, I'm worried, Ellison's tired of Marek getting all this attention, it's all just adding up.

So my God delivered, as He always does.  That very same day, Marek woke up from his nap with a respiratory rate of 76!  Normal is a baby this age is, like, around 30ish.  I thought, this is enough!!!  I make a call to the pediatrician, and finally get to talk with her.  I pour out my concerns, and she keeps trying to explain everything away, too.  Like, it can take 1-2 months for babies to get over bronchiolitis, etc.  We talk about reflux.  She tries to explain laryngomalacia to me.  I tell her, that with all due respect to the specialist, I do NOT think that's what this is.  I explain his breathing and cough, and she tries to tell me it's stridor.  I tell her again, this is NOT upper airway stuff, it's coming from his lungs.  I politely tell her how I have the advantage of listening to his lungs throughout the day, and he is NOT normal!!!  I finally ask her if we could please at least do a chest xray.  She says she is willing to order one, because she does like to have one as a baseline for wheezing kids anyways.  So I load up the kids and rush over to the imaging center quickly before they close.  The great thing is, you wait there for the results, the radiologist calls the ordering physician, then your physician relays the results to you on the phone right there.  So she tells me, "I am so glad you went.  He has pneumonia and needs antibiotics.  He has an infiltrate in the right middle lobe."  THANK YOU!  But I quickly remind her that he is on DAY 9 of antibiotics already, with only 1 more day left!  "Well, it's obviously not working.  He needs something stronger."  Now, I don't want my child to be ill, but THANK YOU, GOD, for guiding me so clearly!  It was amazing how He worked this out, and He even took care of Ellison while He was at it.  While normally she shows the effects of her brother getting this attention, she was amazing!  She helped watch him and entertain him while I was on the phone, as soon as I told her we had to go quickly so we could get the xray done before they closed, she jumped right to it (which is highly unusual for our little lollygagger).  She was just so helpful and so good.

So, where the heck are we at now?  Yesterday, after a few doses of the new antibiotic, we thought Bubba was already sounding much better.  But this morning he has sounded pretty bad again.  I'm praying it's because of everything finally breaking up, so time will tell.  We're just trying to stay focused on our little Butternut Squash someday breathing and sleeping well again and feeling better!  He's a trooper as a sick baby, just like his sis.

[November 10, 2011]