So after still no improvement at all after a full 4 weeks of doing the albuterol nebulizers, the steroid nebulizers, oral steroids, 2 antibiotics, and reflux medicine, I had another pow-wow with our pediatrician 2 days ago. We've been in close contact over the last few weeks! She has been great, and has been very concerned about him. She tried hard to get him seen by a pediatric pulmonologist ASAP. Brenner's being the obvious choice, she tried there first and the soonest appt is Dec. 5. She then tried Chapel Hill and Duke, and those appts were even after that. After deciding he shouldn't wait another 2.5 wks like this, she advised us to go to Brenner's ER, and instructed me to insist on a pulmonology consult and to get Marek admitted so we can get to the bottom of this, because she felt he needs a full work-up at this point, and possibly a bronchoscopy. She doesn't feel it's asthma since it's so unresponsive to everything, and she doesn't think it's viral because we would've seen an improvement of some sort by now. SO, this was our game plan for yesterday morning. We decided to wait until yesterday morning because that's when he really struggles with his breathing and needs a treatment, so I was to go there as soon as he woke up without giving him a treatment. We did this, and he struggled as we expected.
So Marek was indeed puffing away when we got there with a rapid respiratory rate, belly breathing, and retractions. He still has a very junky cough and some wheezing. They took him right back, and kept him on a pulse ox (to measure his oxygen levels while he plays), and they were a little low. So not fabulous, but not needing supplemental oxygen yet. They repeated a chest xray, which showed no pneumonia, but scattered areas of atalectasis (basically little areas where the tiny air sacs are collapsed). So nothing major showed up. Our pediatrician called the ER and talked to the doc. The ER docs tried to get pulmonary to come down, but "they never do", and they didn't. They tried to set us up with an appt in the pulmonologist's office sooner, and they couldn't get that either. Basically they said Marek looks good despite this breathing, he's playful and eating well, so there is nothing more they could do for an ER on an "emergent" basis, and that we'd just have to keep a close eye on him and wait for our appt. I was still concerned because when Marek would lay down (while playing), his sats (oxygen level) would drop down to 88%, which is not good, and that's usually a point where you need to be put on oxygen. When I asked the ER resident about that, she said "Well, he perks up and tolerates it well, and I know you'll keep a close eye on him." They didn't even do a breathing treatment when the doctor said he heard him wheezing. (!). So we were sent home to wait some more. Our pediatrician is very upset about it, but is staying in close contact with us. We are still going to persue allergy testing but she doesn't think we'll find much there. The stinky part about that is we had the appt for allergy testing set up for yesterday morning, but we decided the more important thing was to go to the ER. So after canceling that appt, I called back yesterday to reschedule and now we can't get in for another 3 weeks. So we are just waiting... and he is just puffing away...
One little tiny bright spot for us - Marek slept through the whole night last night!!! This past 1.5 months he has slept SO bad!!! Doesn't help that he has cut through a few more teeth through all of this illness, but I felt awesome this morning! Heck, it was probably due to lack of oxygen to his brain for all I know, so I'm not sure if I should be too excited. But nonetheless, thankful for solid sleep for once. Jonathan felt so good he actually went and ran in a half-marathon this morning in High Point. Hey, better him than me!
[November 19, 2011]
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