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January Update

Aah, blogging.  

Hi, friend, glad (I think?) that you’re here. Perhaps you headed here because my Instagram has been dark for a bit or perhaps you’re finding this from Facebook - whatever your source, prepare yourself for a little update!  



Avery had a nasty bout of pneumonia in the middle of December, which we miraculously handled in entirety at home. She recovered just in time for us to travel to Ohio to be with my husband’s family for Christmas, which is always a special treat.  


We had a white Christmas and my children are now begging for a dog (except for Lolly, who would prefer a horse!). 


On the last day of our trip, Avery’s secretions increased and had an odor (gross, I know, but one of the most telling signs for what type of sickness she’s battling - it’s how I so easily discerned that she had pneumonia earlier in the month and was able to get her treated before it was devasting). 

We were home for a couple of days with her spiking random fevers and needing oxygen at night before I felt like she needed to be evaluated. She wasn’t in distress and she had no symptoms that were beyond my ability to treat, but I felt so strongly that she had tracheitis instead of a simple virus, that I decided to haul her to the UNC emergency department on New Year’s Eve for testing. She was playing and rolling around on the bed, teasing the doctors, obviously in OK shape, so I told them I knew she wasn’t emergent, but with her recent pneumonia and the holiday weekend keeping her from being able to see her pediatrician for several days, I hoped they could do a trach culture and chest x-ray to put my mind at ease. 

The chest x-ray was fine (she does still have diminished breath sounds in her lower right lung) - showed signs of congestion, but not of acute pneumonia, so she likely had a virus.  

The trach culture would take a couple of days to be conclusive, so they started Avery on antibiotics for “probable trach infection”. Kids with tracheostomies have colonization of certain types of bacteria constantly on their trachs, so infections are, sadly, very, very common. For instance, Avery is “staph colonized” at her trach site, after acquiring a tracheal staff infection within 24 hours of her tracheotomy in 2015. We do regular trach cultures to have an idea of what’s growing in her trachea at any given time - she has several bacteria types constantly present. 

We discovered a couple of days ago that Avery has Haemophilus Influenza (not the flu - I know that name is confusing!). The doctor who called said that she had grown a significant amount of the bacteria from the sample that had been taken in the emergency department and that left untreated, for medically fragile children with compromised immune systems, can lead to deadly pneumonia, bacteria meningitis and sepsis. 

Oooook, I see you again, Jesus, looking out for my baby! Telling me when to take her in for treatment. Whew, so, so grateful I didn’t try to be a hero and manage her treatment myself. I always feel silly taking her to the emergency department (thankfully, that’s not something I’ve had to do for almost 2 years!), especially when I know she’s not actually emergent, but I never want my pride or confidence in my ability to provide care, to keep me from getting help for Avery before it’s too late.  



She’s almost completely recovered now, so we’ve just been laying low, enjoying unexpected snow days and extra days off from school for the big children. 


I’m not sure how long I’ll be off of Instagram, but I will tell you I’m not missing it. So, until I return, you can find me here. I’m looking forward to sharing my goals for this year and how excited I am for what’s to come. I’ll also be rounding up some of my favorite books that I’ve read recently (and one that I HATED - literally stopped reading it halfway through because I thought it was such garbage!) for you in case “reading more” is one of your goals.

I’m convinced that life has never been sweeter. Not perfect, not without pain, but life couldn’t possibly be sweet without pain as its contrast. Somehow it’s as though all the struggle and tears begin to lose their power and a sense of peace and joy rises up in the valley and you can’t tell if you’re really in a valley or on a mountain top or somewhere in between. You just know as long as Jesus has lead you there, it will really, seriously, ACTUALLY be absolutely fine. 

Alright, chilling with the adverbs now. Until we meet again... Much love!  

I Needed Unknown

G-tube Nutrition + Probiotics