Hoppy Easter.

It never gets old to use that! And i mean, really, how often do you say “hoppy” anything in like, September? No, it’s only around Easter. So there, i am using it. Super cheesiness and all!

Anyhoo.

(don’t ask about the above picture. it’s just kaylen. Enough said. and yes she was celebrating Easter by using the pumpkin foamie stickers.)

Long time no talk. I have had the death virus from Ebola all week (and for all my literal friends – no, I did not actually get that diagnosed. Ebola virus is my code for a cold/viral illness that sucks my will to live because it overtakes every waking second and most of the ones i try to sleep too. I am sure if I ever DId actually go to the doctor, they would probably just tell me its some virus that will suck my will to live for a week, drink lots of water, sleep a lot, and hope it passes soon. Which is why I never go to the doctor. For myself. Anyways, I’m digressing.) All of that to say – I’ve been not feeling well, Kendall’s been fighting the same thing (I assume based on how she looks/acts/sounds), and the other three girls are all just flying high and intense like usual! Ben’s been travelling, we’ve been trucking along, and that’s life in a nutshell!

First – the update from last week’s appointment!

It was WAY more anti-climactic than I anticipated! Basically the doctor just wanted to get up to speed on kendall and her issues, and even though he does feel like we may get some good answers from the motility testing (manometry), if we can continue to move forward on her J-feeds and wean off the TPN (iv food), that that would imply that right now, her motility has “improved”, and we can postpone the testing. He was very hard to gauge exactly where he was landing – some of his statements seemed to be implying that we were kind of “WYSIWYG” – what you see  is what you get – with Kendall’s motility. Meaning – she’s on TPN, obviously her motility is less than ideal. And this might be as good as it gets. And then in the next breath he would seem to be even more optimistic than me that we will get her gut working normally again. I had a hard time keeping up with every aspect of what he was really thinking – but overall, the implications were very positive. He was very proud of the work Kendall has been doing to handle J-feeds and even the small amount orally that she is continuing to try to take in. I continue to be very optimistic that J-feeds will become Kendall’s main nutrition source very soon (June maybe?) What happens after that I can’t even begin to guess at (with regard to the central line), but that is my goal. To have her up to goal rate of feeds, tolerating enough time on the pump to keep herself hydrated/calories met, and continue to let her eat and drink as she can handle.

And while all of that sounds really nice, the reality is that it is still a long row to hoe. All of this hinges on Kendall’s continued ability to tolerate small increases to her rate. And while some days that is based on her level of pain tolerance, most of the time it is more dependent on how fast its coming back out of her! When we increase her rate she has a few days of increased output, so instead of increasing 1cc/day right now, its more like 1cc/every 3 days. But the point is, it’s an increase. We will take it and we will rejoice in it! Unfortunately, along with that snail-like progress, Kendall’s oral intake varies greatly from day to day, and the sad truth of the matter is that even on her really really good days, it’s still nowhere near what she used to be, and we used to depend heavily on her great eating and drinking to help make up a calorie deficit left by her not tolerating tube feeds all day long. (And even with that, based on the HUGE improvement we are seeing on TPN, I question how much of it was actually being nutritionally utilized even if she was packing it all in!) But – whatever. The point is, she’s doing GREAT right now, we are making good forward progress, and we are hopeful that our “stayed out of the hospital” streak continues for a good long time!

I know that it is Easter today – but having had my entire family here today (which was a MAJOR blast by the way!  – that’s what she said), I am just wiped out. (on top of still dealing with leftover effects of the ebola virus – blah) So i will blog about Easter, hopefully with pics, tomorrow. Or maybe Tuesday.

Tomorrow (monday) we get to go see the amazing Dr. A up at hotel LG. I am hoping he has some magical elixir juice he can give to Kendall (with enough extra dosing so that momma can have some too!) to stop this insane hacking up of lungs that is going on here. Kendall does not cough very effectively due to the weakness in her chest muscles, so its pretty tough watching her get racked with these coughing fits. Nebulizer treatments on top of her inhaled steroids are helping give her a few hours of relief and help her feel good enough to try running around with her sisters, which then starts a whole new round of coughing. Oy. I actually expect a bit of a lecture for not calling him this week – but honestly, i am so sure this is just viral bronchitis (for which you do the supportive therapies we are already doing at home), that calling last week would have just been adding one more issue on top of the whole stupid arm/elbow/whatever craziness.

Oh speaking of that – the chiropractor on Friday morning did a thorough exam on Kendall’s arm (I wasn’t there, so it was him and Ben just dealing with her complaining and figuring out what was going on anyways) – and he could definitely say that the nerves in her shoulder  were being very badly pinched, and that she had probably sprained her wrist pretty badly (which is where all the lumpy swelling was, so that makes sense). Out of a sense of wanting to do SOMETHING to alleviate her pain/discomfort/inability to play or do anything with her dominant hand, I wrapped it in a mini-ace bandage we had, and something about that small amount of extra support seemed to help her relax a little bit (she stopped holding it so tightly to her body, and it definitely made a difference in how she was sleeping for the better!) So – all the elbow wrangling from the pediatrician may or may not have been necessary (for all I know she really did have her elbow kinked out of joint too, i mean, hey why not?), but overall, she is in a lot less OBVIOUS discomfort for the time being, and that is nice to see.

And now I am REALLY tired.

Peace out party peeps.

I hope you all had a wonderful Easter Sunday, celebrating with your family and friends in the  way that makes you happiest!

 

terra