Saturday, March 22, 2014

So much happens in one day these days.

Well. A lot has happened good & bad the past 2 months & I am on my game enough today to finally blog. :)

So the medical side: 

When Steve was in the hospital our doctors prepared us for 2 things. One was that Steve's infection in his lungs may colonize and never go away, which as y'all know has happened as of a little over a month ago. The other was that Steve would eventually no longer be able to come off the vent. That's ALS right eventually progressing so much that you have to rely on machines to survive. Steve decided early on that he doesn't want to live vent dependent for a long period as it's not the quality of life that he wants. Recently, Steve, began to need the vent more and more, and eventually it happened as he's off the vent he becomes sleepy & disorientated. For those who don't understand the vent not only breathes for you but it also helps your body clear CO2. While Steve is able to breathe on his own without the vent it is becoming obvious that his body is having difficulties with CO2. After speaking with our Respiratory team & our nurse it has become apparent that Steve will need to remain on the vent more than not. He can give his body a workout a few times a day but he will need to be primarily vent dependent. This is obviously a sad moment for us but I am grateful for several things. First of all that I have gained enough knowledge of ALS & ALS with Steve to know when something isn't right. I almost knew the answer before I called anyone to see what they thought. I'm also grateful we have this amazing vent to use & that at this moment Steve is willing to use it. He said through tears the day we decided that he wanted another Christmas with me. Now that he's been on the vent full time for a month he is getting used to it and actually has noticed some weight gain and a slight increase in energy.  Needless to say there are even more cuddles & special memories happening.  I am always amazed at how resilient & determined Steve is & how he is able to constantly adapt to each new challenge ALS presents. 

Because of the antibiotics Steve is on, being on the vent full time (drys a person out more), & more activity but not an increase in fluids Steve had some extreme crystallizing in his kidneys & he got pretty dehydrated.  We had to stop all antibiotics for close to two weeks and increase fluids a great deal.  Steve thankfully has bounced back from that, where we are able to start him back on the antibiotics again.  Thankfully because the pseudomonis is still there obviously but now the MRSA is also back.  So now he will need to continue hoping the antibiotics attack the infection while being gentle on the rest of his body.  Lots of love & light for that please. *thanks :)* 

On the fun side: 
We did a news story with channel 2 action news.  check it out here.

Our dear friend Stephanie did an amazing fundraiser for us that was full of lots of love, great energy, & crazy talent!  few photos

We've done several paint sessions & have made lots of new drive paintings with Jeremy & Maria. 

Lots of fun visits including close friends & my sister :) & we talked about some hopeforsteve website updates :)

I know I mentioned in my latest blog about my yoga journey.  A lot of exciting progress was made the past 2 months. 

Oh & let's not forget it's SPRING. The weather is warming up. :) 

So yes.  That's why I haven't blogged & that this is short. I do have some other random thought blogs to write hopefully next week for y'all.

Once again I have to express our extreme gratitude for all the love, support, & light that you surround us with.  We are blessed & feel all the love coming in. thank you thank you xo.