Saturday, December 27, 2014

Detour of Events

So I thought I would be writing about our trip to El Salvador, but instead I get to tell you about long nights, de-sats, and ways to make the hours move along.  

Denalli caught a bad virus that took a turn for the worse on Christmas Eve.  We had a long night of therapy sessions- but kept her going strong. On Christmas Day she did okay, had a couple of episodes, but made some good memories and had a good time. Christmas night was another long night full of de-sats, coughing, treatments and a little bit of sleep. The day after Christmas Denalli was a lot more tired than usual, had more coughing attacks and spent most of the day close to her machines. That night at 3am, (the 3rd night we had been fighting the sickness) Casey and I decided enough was enough and took her to the ER in RC. 

She received a loading dose of steroids that dramatically changed the way she was feeling. By that night she was doing well, and we had the option to go home or stay for observation. At one point we were going to go home- but instead changed our minds due to "mommie instincts" and opted to stay for observation. We are so thankful we did, because Denalli ended up sating low, and needed suplimental oxygen. 

That brings us up to speed to today. 

Today was a fairly good day. She had a good morning- colored pics, water colored more pics, watched movies, and took a nap. During her nap- her oxygen levels dropped below the comfort levels and medical intervention helped bump the numbers back up. 

Tonight she is resting peacefully. Her numbers are okay. No suplemental oxygen is needed yet. The attending doctor today has had a history with SMA kids from Iowa, and is in no hurry to send Denalli out the door. 

As with every hospital stay- we learn more and more about the complexity of this disease and how to be Denalli and rykas best advocate. We are so vey thankful for the wonderful hospital staff and all that they do to make us as comfortable as possible. We really have no idea when we will be able to go home. It all is a day by day and night by night sort of plan. 

We ask for prayers for healing and restoration for Denalli. She is such a fighter and even the Doctors are so impressed with how well she is handling  this virus and how well she has done in the past. 

Please also pray for the 4kids at home. This is so tough on them. Knowing Denalli is not feeling good and having both mommie and daddy away makes a long couple of days. 

We are ao very thankful for Casey's family that came to see us for the holiday and stayed extra days to watch and care for the 4 little ones at home. 

We are so thankful for a gracious God that is patient and kind and healing. 

Thanks for following along- 

~*~ OneBLESSEDmommie ~*~ 

Ps- to our "angel" family that sent Christmas cards to the family and is near by- please give a call! We would love to see you!