Friday, May 10, 2013

Home Sweet Home, Sort of...

Tatum Update:  We are home!! Yay Tatum.  Last night when the doctor came to see how we were doing he felt like Tates was doing well enough to go home.  We were soo ready.  We couldn't pack fast enough.  Everyone was so great, but I get a little stir crazy.  I do have to be a little honest here, though.  It was nice to be able to sit with Tatum and just worry about her.  No distractions like laundry, and cleaning and cooking.  I could just sit and hold her hand and talk to her and stroke her sweet head and just concentrate on helping her get better.

 Here she is nakey before Dad came with her jammies
 Are we mean?  We just love playing with her new hair.  We thought she kind of looked like the Lollipop kids from  the Wizard of Oz, what do you think?
Glad her little Brobie friend got to come...
Hanging out with dad..
A smile, even though she felt like junk..
 Giving in to the feeling like junk thing..
 What a beauty

Hilary is in the house!  She came to visit on Thursday.  I missed her a lot while we were gone.

So when we got home yesterday, the reality of home hit when we walked in the door.  It is always just a little chaotic coming home after you have been gone for 3 days.  We got Tates settled and then I ran around trying to get things unpacked and restored.  Tatum had a great night, she slept until about 5am this morning then I got up and got her settled again.  While she was sleeping I did a few things around the house and then I went down to run for a bit on the treadmill.  I come up every 15-20 minutes to check on her.   I came up and turned on her sat machine that checks her oxygen level.  When it first came up it started at 90 and then quickly started to descend.  It kept going and going.  I sat her up, pounded on her back, turned her on her side, tried to arouse her.  I got a sweet little smile out of her.  I started to panic a little.  I was thinking, oh no you don't little girl!!  She had done so well since she got home.   So I went to check the oxygen machine to make sure that the setting was right.  It was, so then I started following the tubing to make sure it wasn't kinked or something.  When I got to where her tubing hooks into the tubing from the tank, DISCONNECTED!  Nice.  Really, who is in charge here.  The new tubing doesn't fit as tight so it must have  come undone at some point.  Not my best moment.  As soon as I hooked it back up, she did great.  Imagine.
She had a pretty good day overall.  She still needs suctioning occasionally.  I am hoping that will improve as her lungs heal from the pneumonia.
Tonight when I was walking out of Walmart, the clouds were very ominous.  It looked like something out of a science fiction movie where the earth gets sucked into the abyss.  I thought for a minute that that didn't sound so bad.  Am I right?
So the back story that has been going on for a few days while Tatum was in the hospital was trying to get her scheduled for her tube change.  I will try to condense the story.  It started on Tuesday when I called (before we went to the hospital) to let the GI doctor know that I thought that we needed to do a GJ tube because I was thinking that during her seizing that she was possibly refluxing.  Don't think that I ever got to talk to the doctor himself ( whom I really like).  Nope, he is like the great wizard behind the curtain and his Medical Assistant John has taken it upon himself to be his protector.  Perfect.   So John talks to our doctor and then calls me back and says that I need to talk to my neurologist and that we were cancelled off of the schedule for May 30th to change her tube.  What?  I asked why we were cancelled, he said that they needed to wait until her track was more mature to place a GJ and that we could schedule something in JUNE.    Here comes the mama bear in me.  I said that the seizures were not going to change that it was a GI issue and that I wanted him to talk to the doctor again.  This went on for a few more phone calls.  Then we ended up in the hospital with aspiration pneumonia, which was good evidence for them to maybe understand that time was of the essence.  This back and forth was going on the entire time we were in the hospital.  My pediatrician could not even get the wizard to call him back.  Frustrating.  I finally called them again on Thursday and explained that we now had the NJ tube and that we needed to figure out the GJ tube and when we could get it.  I told him that our little girl was not going to live very long and that I did not want her to spend the next six weeks with an unnecessary tube down her nose!  I tried to be nice, but he was very grumpy.  At the end of our conversation he basically said don't call me I'll call you.  He may have been a little bugged.
When we got home last night and I was getting ready to go to bed, I felt like I really needed to just turn this over to Tatum and her "force" and to Heavenly Father.  I prayed very hard for the doctors hearts and minds to be softened and understanding of Tatum's needs, and guess what?  They called this morning and scheduled us for May 22nd, which is 8 days earlier than our first date!  Tatum gets what Tatum needs.  That is the day before her birthday, best gift ever to not have a yukky tube down your nose.   I know that all of this was not a coincidence.  Heavenly Father is mindful, especially of his elect little ones.  I love being Tatum's mom and witnessing the amazing things in her life.
This morning I was talking to her and she was smiling so cute.  I love knowing her and learning about her sweet personality.  I know that she is aware, and she is funny, (obviously because she thinks I am funny) and she is a little bit feisty, (as she bites on the suction tube).  I know she is surrounded by angels.
I am especially grateful for my doctor and his staff who love Tatum and us and do their very best to help us help her.  I am grateful that they trust our opinions and thoughts as parents.
I am grateful for personal revelation that comes for those you have stewardship over.  As a mother it is invaluable.
Grateful for good friends and neighbors and family who continue to buoy us up.

1 comment:

  1. Heather, I am so glad she is getting her GJ tube in sooner than later....whew! I have been praying hard over here, too. I love that Tatum gets what she needs. Keep her working on getting us out there! ;)