Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Wednesday, February 13, 2013


     Once again, we interrupt my previously scheduled “Why I Blog” post, with…pneumonia.  Yep, our little guy has pneumonia.   A lung infection.  Exactly what we have been trying to avoid for the past 2.5 years.  Heck, he probably had RSV, the dreaded virus, and it settled into his lungs.  The rational side of me knows that this type of illness was inevitable.  The not-so rational side really hoped I could protect him from any more lung damage for a lot longer, if not forever.  I never wanted him to have to struggle to breathe again. The rational part of me thinks, “He’ll be okay.  He can handle this.”  The not-so rational thinking goes more like this, “Is this the ‘other shoe’ dropping?  Is this the time we take him into the hospital and he doesn’t get to leave?  Will his lungs be too weak to handle this illness? Is this the start of the trend of constant respiratory illness?”  If you’re the mama of a child with compromised lung health (asthma, BPD, etc)…you might be thinking that my irrational thoughts are pretty rational, all things considered.   

      What started out as a mild cold…a cold so mild I didn’t realize it was even affecting Jack…quickly turned into rapid breathing (tachypnea), retracting (when the skin pulls in and out between each rib with each breath, and you may be able to "count ribs"), high fever, loss of appetite, vomiting (just once), high heart rate, nasal flaring, and cough…all typical symptoms of pneumonia and many of the symptoms Jack’s pulmonologist told me to watch out for almost 2 years ago, after he was discharged from the NICU.  I knew when he didn’t wake up early, like usual, this morning and was pretty lethargic this AM, that we would be going to the doctor and possibly the hospital.  I checked his O2 sats and they were acceptable (89-92), so I stopped myself from packing a hospital bag.  I had faith…at least I think I did.  
The note from Jack's pulmonologist, reminding me of symptoms in the "danger zone."

     I appreciated that Jack’s pediatrician recognized that he would need a chest x-ray.  Jack, however, did not appreciate the hard plastic contraption he was to be placed into for the x-ray.  It didn’t happen and we found a different way to get the pictures of his lungs.   There was a small part of me that thought it would come back negative for pneumonia, or anything else.  Jack’s pulmonologist, after hearing all the details, actually said, “This is a good thing.”  And I scoffed, knowing exactly what she meant…that his lungs “needed” to be tested at some point.  She may be right, but I’ll never quite believe that and I’m not remotely comfortable with testing them.  Once again, I’m holding my breath, waiting to see whether my little boy’s lungs will pass this test. 
     I recognized today, that part of me wants to pretend that this illness isn’t happening.   I even attempted to go to a meeting at that very hospital that I fear he will return to…but turned around and came home.  (Yes, it’s okay for me to visit and volunteer there, but NOT Jack!)   But I can’t deny it when I watch his little chest or hear his huffing and puffing.  After those 112 days of unrelenting anxiety, I feel like I’ve had a life-time of worry (of that intensity) in such a short time.  Honestly, I feel like Jack maxed out his parental worry quota in the first four months and we shouldn't have to worry about illness ever again!  However, I do feel as though I'm better prepared to handle an illness like this, than I might have been just a year ago when Jack was newly weaned from O2 support.    
Our weapons, against respiratory illness:  thermometer, spacer, inhalers, antiobiotics, pulse-ox, stethescope...and lots of love!

     After those 112 days, we kept Jack exposure to illness limited, and there used to be a point that I knew if he got sick, I would never forgive myself for exposing him.  I didn’t think any trip to the grocery store or crowded place was worth an illness for him.  But we’ve relaxed on that just recently…and what do you know…pneumonia.  Part of me wants to stop “living” again and stay isolated like we had the past 2 years…but I “sort of” know that isn’t fair to Jack at this point.  It’s such a fine line…I feel like we are constantly teetering on that line, hoping to achieve the right balance to protect Jack’s lungs while also supporting his social development…both options are supporting his life, just in different ways.  I have talked with many preemie parents that struggle with this same issue.  This lung disease is a rough one…it’s not like a broken leg that can be casted.  The “cast” has been limiting exposure and isolation for over 2 years, but like a leg in that cast, things start to atrophy eventually, and I sure don’t want Jack’s social life to waste away.  When he was younger, all he needed was his family, but hanging with other kids is essential to his development too.  This boy loves other kids and he (and his mommy) need to get out of the house!  I cannot wait for this winter/cold/flu/RSV season to end.  
Happy Valentine's Day! (Jack's handi-work)

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