Monday, September 9, 2013

We love you all. Lots. So here's an overdo update.

Well a lot has happened since I last wrote & I owe y'all updates: 

Been a bit busy soooo will be probably just updates this blog but because we love all of you who follow & support us so I owe y'all some words :)

So for starters August 14th Steve ended up back in the hospital, & was discharged home the 29th, starting to feel like Emory Johns Creek is our summer home with how much time we have spent there this summer.  

We went in initially because Steve began having some serious stomach issues where he was rejecting all feedings and became severely dehydrated and malnourished.  Upon entering the hospital we were also concerned with possible aspiration from some frequent vomiting.  Because of Steve's condition, frequent hospital visits, & dehydration there was no finding a vein to get an IV or any blood so they decided on a central line.  Steve's had this previous hospital visits with no problems but because he was so compromised going in the line ended up causing a pneumothorax (collapsed lung).  After a few days it was determined he also had pseudomonas & MRSA (either again or still depending on how you look at it).  So we had a lot going on. 

They began Steve on TPN (IV feedings) which has been the most amazing help!  He is doing the best (now) he has in the past 2 months.  Obviously we still have lots of work to do but he is showing vast improvements.  The stomach issue was determined to be gastroparesis, which in short is where his stomach is unable to process food.

Steve was sent home with a PICC line for us to continue the TPN & continue administering antibiotics. (I seriously could be a nurse with all this experience.)  This has been the most strength & weight Steve has gained in months so we are pleased.  We are going to be (once he gains a little more strength) be doing a procedure to get his feeding tube changed from a G to a J.  Theory is it is not a dangerous procedure that will move the feedings lower in the gut so his body will be able to handle "food again" & we can discontinue TPN.

Steve still has an infection we are treating in his lungs however his lung doctor is pleased & believes Steve is almost done beating this (hopeful).  He sleeps with a trilogy on pressure support settings (meaning he takes the breath & the machine helps give him some extra air) & is finally sleeping more through the night (Thank the good Lord, whew).  He got as low as 83 lbs, which when you get that malnourished your body can't fight off infections which is why he had such a severe case of it, since gaining 5 lbs & possibly even more since being home his body seems to be fighting things better.  Obviously we still need all prayers, good vibes, positive thoughts etc that he continues to improve & build strength with no more road blocks!

In other news:
Special thanks to Jeremy Brown & everyone who purchased some of Steve's art the Drive art show was a great success.  Due to popular demand & the fact that Steve has finally been feeling up for being out of bed we plan to make more paintings this week---so if you are interested in purchasing one act quick, they don't last long. :) The 'Drive' art show promo video

While we were in the hospital we had a very special visit from Michael Franti, his partner Sara, & good friend Leah.  It was a blessed visit & one that I will never forget.  So much love flows from them & to them & we are so grateful & blessed to have them.  Upon that visit Michael & Sara also gave us the blessing of helping us hire some help at home for a little relief for me! Amazing.  They are truly the most genuinely kind hearted, warm. & caring souls.

Also check out their video for Do it for the Love foundation Amazing foundation & an amazing video highlighting our "joyful experience" it has been with Michael & Sara.

Also, very excited to announce that the Hope for Steve documentary should be coming out soon.  We haven't officially released the trailer although it has "leaked" so if you look hard enough you may find it.  Stay tuned though shortly we will be releasing.  We are also looking for musicians who are willing to allow us to use your talents in the documentary if interested contact me & I will forward your info on to our producers 

Ok I once again need to thank ALL of you for the love, support, random acts of kindness, running errands for us, donations, prayers, & all around awesomeness.  Each of you help us share our message each day & continue to energize us for this battle.  After all we are all in this crazy ride together.

Lots of love!!! xox