Monday, May 23, 2011

We are still here!!

I apologize for being MIA these last 10 days.
We have been moving.  I spent a week packing and started getting a bit sick.  I thought it was allergies, finaly went to the doc as it was getting worse and worse.   Come to find out I had pneumonia.  I got so weak I could hardly move, and breathing was a struggle.  Lots of meds and rest later I'm somewhat better.  Bob spent a few days in town helping finish up all the packing.  The movers came this last Thursday and all of our things are now in KC. 

During the move Emily got sick as well.  Her asthma went out of control.  The school called saying her O2 was 86.  Rushed to the doc for tons of breathing treatments and steroids.  It wouldn't come above 95.  The next day the same thing happened.  They doubled the breathing treatments and steroids.  Still stayed around 95 to 96 for days.  She is finally able to breath without having to work so hard and her O2 is hanging out around 98.  Much better.  She's hoping to try school today as she was out at the end of last week.

My little man.  He's "stable" at the moment.  It's been a rough time for him.  His O2 has been suprisingly pretty good, but the last 2 days his upper lobes have sounded junky.  We are hoping with agressive suctioning that will keep it from settling farther down in his lungs.  He's running a bit of a low grade, but not enough for major concern.  His heartrate has been strangely low for him, which we will be calling the cardiologist on Monday.  With his heart issues and this dang calcified leason in his heart, we report any changes and let his cardio team decide what next!   He has struggled the last few days with dehydration.  He can't handle any heat at all.  The air conditioner has had to be turned down low to allow his body to be able to keep itself cool enough.  We are pushing as much free fluids as possible and as of last night he was finally peeing again.  His new meds to help lower his secretions don't seem to be working effectively enough.  A call is in to his pulmonologist to find out if we can slightly up the dose.  This Tuesday Eli's wheelchair comes in.  He will spend a few hours at seating clinic getting all the final adjustments done!  We are excited to give him this opportunity to be up and moving around even when he's to tired to crawl on his own.  Eli has also been trialing a new car seat this week.  He struggles to breath well in the car and will routinely drop his O2 levels to 71.  His pulmonologist suggested he meet with a therapist trained in carseat positioning.  She has loaned us a seat to see if we can get some better positioning in the car.  He has done a bit better with the new seat but is still dropping into the low 80's.  Luckily with the move coming up soon he won't be in the vehicle as much, but will still obviously be in there.  We are hoping soon to find something that will make it easiest for him to breath!

This past Saturday was an AMAZING night.  My mom got Bob and I tickets to see Josh Groban in concert.  It was my birthday present from my parents!  Wednesday evening the phone rang and it was one of the hosts from our local radio station.  They have followed Eli's journey (they are the ones who arrainged for Santa to come to Eli, since Eli couldn't go to Santa) and wanted to do something for Bob and I.  They had arrainged back stage passes for us to meet josh groban and get pictures and autographs!  I was beyond excited!  Saturday evening we did get to meet him, and even got to chat with him about Eli and give him one of Eli's cards.  He was an amazing guy and it was such a great experience.  We were enjoying the concert and listening to all of the amazing songs.  Next thing we know Josh is talking before going into his next song.  He was talking about meeting us backstage and our little mans journey and fight to stay strong.  He dedicate a song in front of 6000+ people to our little man!   I curled up into my husband and cried as I listened to him sing for my tiny man.
No recording was allowed during the concert, but I wanted to share a video of the song.  Here is the link to view the video and hear the song.

I promise to keep up with blogging.  The kids and I are at my parents for this week and we officially move to KC friday.  Our life is changing, we have all vowed to go into this and to stay strong for our little man.  Sometimes I can't believe this is all happening.  We are leaving our home, our family, our friends, all to be close to the childrens hospital.  Who moves for a children's hospital?!  Parents of medically complex kiddos do.  I know it's not going to be easy, but I know we are doing what is best for Eli.  I wish I could be as strong as my little man.  Watching him get the last bit of energy to push himself into someone's lap.  Everything he goes thru, smiling as he goes.  He wakes up hooked up to tubes and machines and looks up at me and smiles.  He's amazing and is constantly teaching everyone he meets the true meaning of life.  We are constantly told how much Eli and our family have touched people, and we feel we have been blessed to have met so many other amazing people thru Eli's journey!

Pictures soon!  I have to find my camera cable!

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