still here!

In spite of the fact that I have been pretty much MIA from this beautiful place in the world wide web, we are, in fact, all still alive and kickin’!

I don’t know exactly why I have let it go for so long without blogging, except that it’s just been a whirlwind of STUFF since the beginning of the year. I do have a LOT to catch up on, and I am sure there will be lots of backdated posts popping up here and there over the next few days! I have to update about Christmas, Kendall’s medical stats for the year, some new year’s goals/resolutions type ideas floating around in my head, basic family updates, blah blah blah. I actually have taken the time to make a LIST (I know, be shocked) of all the posts I’d like to write….I just haven’t actually, you know, taken the time to make a POST.

As a quick update –

The babies have been sick with this cruddy cold stuff since the first week of December. About ten days ago we started Kaylen on antibiotics, assuming that it had at that point turned into an infection somewhere, most likely her sinuses. She also went to spend a long weekend with my dear mother, and the distance from each other (Kaylen and Kendall that is) – seemed to help both of them turn the corner finally. Kaylen has continued to improve and I think is pretty much over it (FINALLY!!!!!), and Kendall was great for a few days, then started in with the nose and horrible cough again, which quickly degraded into breathing difficulties and just lots of chest “junk”. After a horrible day driving around to 3 different clinics (none of which was close to home!), we finally found a radiologist who could interpret the x-ray results on Kendall, and sure enough, she has another pneumonia. Her pulmonologist (the great Dr. A) believes that it is bacterial, so he started her on some antibiotics (omnicef which I HATE because it turns her poop red, and then you can’t tell if she’s bleeding because the antibiotics do such a number on her GI tract, or if its just antibiotic food coloring). We will follow up with Dr. A tomorrow (Monday) via phone to check on how she’s doing and come up with further treatments/plans as necessary.

For those who don’t know – this is the 7th pneumonia Kendall has had. Each time before she has ended up being hospitalized, needing the support of IV fluids/antibiotics and the oxygen, plus round the clock nebulizer/steroid treatments. When I heard that she did definitely have the pneumonia, I thought for sure it meant we were headed for another fun inpatient stay, but her team is definitely on board with the idea that she is in a MUCH better place now than she was with her last pneumonia (in June). Also – she typically presents with aspiration pneumonia (which starts in the lower right lung), which typically turns into double bacterial pneumonia for Kendall (for God only knows what reason). This time, there was no obvious aspiration pneumonia (her left lung actually looks and sounds WAY worse than her right side), plus it was “early stage” pneumonia, so HOPEFULLY we caught it early enough and are hitting it hard enough with this medicine that we will knock it out before it really starts to affect her. I was VERY relieved to hear that it didn’t appear to be aspiration caused because that would probably just add more fuel to the GJ tube theory, as well as be somewhat indicative that her fundo wrap was not as effective as it used to be. I know that’s probably just mumbo-jumbo to most of you so here’s the simple translation": It means that her food IS going to the right place like it should, and this is just your regular, average, cold virus that settled in the lungs type of pneumonia. A “regular” old illness for once!

She has definitely needed a lot more nebulizer/breathing treatments this week than she has in a long time, and she is just a little more low-key than on regular days during her “happy hours”, but overall, I think she just might be holding her own. She Just Might Beat This One!!! I KNOW that that wouldn’t even be possible without all the prayers from you all, friends, family, random strangers…She is made stronger by all the support from each and every one of you.

And while I am cautiously optimistic that this could be the last we finally hear or see from this crazy bug that has invaded our family since December 1 – I of course have a few slight reservations. I am HOPEFUL that it is truly bacterial in nature, and not that this virus has just decided to take up permanent residence in her lungs. If it is bacterial, then the antibiotics will kill it, she will clear it, and we will be back to a good baseline level of health finally. If it is viral, well, it could just be a long few months till its warm again here! It could resolve on its own, it could just continue to zap her energy and cause the junky breathing/coughing. My second reservation is that back in ….I don’t know, one of her other times with pneumonia – May I think? – we THOUGHT we had successfully treated it with antibiotics at home, but it reared its ugly head less than 10 days later and she was back inpatient at that point. Was that time just the unresolved pneumonia or was it complicated by her other metabolic issues? Hard to say – but its still in the back of my mind.

I hate being overanalytical, and I hate being right most of the time about the things I DO overanalyze about her. For example, this most recent diagnosis. Her pediatrician (not Dr. natalie – she’s on vacation, but dr. natalie’s colleague who knows kendall’s case) – basically told me she thought kendall was fine, but would order the cxr (chest x-ray) if I really wanted one. Well, of course, I don’t really WANT one – I’d much rather have a new pair of shoes or a pedicure instead of making my child radioactive with her 982nd x-ray, but I would LIKE to have some reassurance that the crankiness/junky cough/raspy breathing/etc aren’t doing serious internal damage. And if an X-ray is how you can give me that reassurance, then order it up, doc! 4 hours later, the pediatrician was “very thankful” that she went with my instinct, as we caught it early enough to avoid (hopefully) it turning into something worse. How did I know to push for this? I do’nt know. I know that I am keenly aware of tiny changes, and I know I read too much on the internet, and I know that I tend to think too far ahead sometimes about what a + b + c COULD equal – but clearly sometimes that’s a good thing. How do I find that happy medium? Of being aware of changes, and yet not fixating on them. Of being Kendall’s voice and advocate when she doesn’t feel well, without letting medical issues run the rest of our lives. I wish I knew. Because right now, i’d love to turn it off for a few days.

i’d love to be able to stop feeling her chest to feel if she’s still rattling during her breaths, listening to her air exchange with the stethoscope, BEGGING to hear the exhalation that means she is moving air correctly.  But I can’t. Because I do still feel the rattle, and I don’t hear the exchange consistently, and her coloring just looks slightly off and I am trying to talk myself out of it being blue, and more into just…..i don’t know. any color but blue or purple. So I am trying to tell myself that I am just too tired and too overthinking and that she is fine and she will be fine and we’ll be finally out of the woods of this crappy bug with really no other outside support (meaning hospital stuff) and she will have DONE IT finally! Beaten a sickness on her own without a massive decompensation!

I will then proceed to sleep for five straight days in order to mentally recuperate from all of this heavy brain work. HA! I wish….

I know that really, we are so very lucky that Kendall IS as healthy as she is. That for the most part I do get pretty good sleep and am not up having to care for her every few hours, or depend on nursing care in order to get a few winks of shut-eye. So i’ll stop complaining now.

But that’s where things are at today, in the usual craziness of my world!

It has been a very long week this past week – felt like we were running pretty much every nite! Or at least, like “I” was running around every nite this week! Part of my blogging absence has been due to some new year’s “changes” I am attempting to implement, which include getting up well before the kids to try to tackle the housework, some exercise time, some quiet time for prayer – just in general trying to work on making me a better ME to start the days off with. This has served mostly though to just make me a very TIRED me – so most nites after all the errands are done, the cleanup of the same mess for the 874th time that day is done, and i finally collapse into the chair for a little mindless vegging out – I have no coherent thoughts left in my head!

Hopefully over the next few days we can get that rectified though!

I realize that this “quick update” has turned into about 3 pages so I am going to wrap this one up, and try to catch everything else up!

Thanks for checking in on us! Spread the word – terra is back to talking!

have a great Sunday – I hope yours is as powerful as mine has thus far been!

 

terra