Summer Lovin’

Had me a blast…

{sing along now!!!} Summer Lovin’ – happened so fast…

Ok now that that song is stuck in everyone’s head – let’s get to what we’re loving about summer. Namely this beautiful weather. Sure it’s a little warm/stifling/humid/near dangerous for kids with metabolic conditions – but from a “I’ll be missing this weather on December 13” standpoint, I am trying to enjoy all of the humidified glory!

so its been like what a month since I last posted? no way can i go back and catch up on everything, but here’s a brief synopsis:

We got back from the road trip to Rhode Island for my little brother’s wedding and miss KQ decided that would be a good time to stop breathing normally/effectively. We never could quite figure out if she was just battling low energy/fatigue from the trip or if she had another pneumonia due to not being able to clear mucus from her lungs while sitting crunched up in her carseat for the 36 hour round trip. Either way, she had massively increased need for O2 around the clock, many more breathing treatments, and in general just a lot of hawk-like watching. We increased her j-tube fluids to almost continuous to keep her body hydrated, but then had to make sure that it wasn’t TOO much fluid to put an increased stress on her lungs. We doubled her antibiotic that she is already on, dosed her up on tylenol and ibuprofen, and rode it out at home. Probably due mostly to the fact that both her pediatrician and her pulmonologist were on vacation out of the country (not together I don’t think….). But because there was no one who was really familiar with Kendall and her Kendallisms, we figured she was just as safe at home. If she had ever needed IV fluids or deep suctioning we would have had to take her in to Hotel LG, but luckily she managed to {narrowly} avoid that.

Probably most troubling to me was just how much oxygen it was taking to keep her stable, and the fact that stable still meant her HR was relatively elevated. I just don’t know what that means with regard to her cardiologist wanting to start her on the medication. I guess as long as we can keep her “healthy”, her HR should remain in the good range and we shouldn’t need to consider the meds. For my own future reference – it was taking 2L at nite (our max amount on the concentrator) and 1L during the day (our max on our regulator) to keep her HR between 160-180. Even with the oxygen she was still retracting and tugging a lot (when the muscles pull in between the ribs and at the neck, indicating increased work of breathing), so I can’t even imagine what we would have done without the O2 to keep us at home.

But clearly more stuff than this has transpired and i don’t want to make this post all about kendall’s lung craziness. Because I had lung craziness too. I mean gol dang it took FOREVER to get over this “bronchitis”. Granted I never went in and got antibiotics and still can’t afford to go pick up the $200 worth of meds for me and kendall waiting at the pharmacy, so it’s not like I had medical interventions to help my body out, but still. I can’t remember the last time I was sick for almost 2 straight weeks. And it sucked that whole time! So that is part of why i haven’t been around to blog – too busy putting all my extra energy into breathing and staying upright for most of the day!

Other than those minor nuisances, summer has just been cruising along! My children are looking quite native with their tanned skin from spending most every day outside in the pool!

So that’s what we’ll wrap up with for today – some swimming pictures!

Here’s my little 2 year old fish/daughter who has decided that she can swim like a big girl without her floatie swimsuit.

“mommy i take a bref (breath) and go unda da watah yike dis” she tells me.

 

So I’ll try to catch up on a few more things in backdated posts!

Thanks for checking in on us!

 

terra