Wednesday, May 15, 2013

Hotel IHC part two

Well, welcome to the roller coaster ride we call Alpers disease.  We are back in the hospital!  Our doctor thinks that her bowels are backed up and so she is having back flow into her stomach which she is then aspirating. So she has pneumonia again.  And she needs to poop!  She had a really rough night but she is resting well right now.
Here is our road to the hospital. At about 3am Tuesday morning Tates woke up with a poopy diaper. I just about got her settled, then she threw up a little of the brown stuff again. After a few hours I was able to get her back to sleep. I frantically got things done because I had a feeling that it wasn't going to be a good day.  She threw up a few more times and I was having to bump up her oxygen so I called our doctors office and made an appointment. The soonest they could get us in was 3:50. I started getting showered and she was having a pretty rough time. I decided to just pack her up and take her in early. I really did try to play by the rules!  I got Hilary settled and packed the van and got Tatum in the car. I packed a hospital bag just in case but i was hopeful that if i was prepared to stay that maybe we wouldn't have to.   Apparently that is an old wives tale that isn't true!
  I had something in the neighborhood that I needed to  Drop off for the activity that night.  I ran up to my neighbors door and she wasn't home so I left the bag on her doorstep and turned to run back to the car. She has two steps about half way down her sidewalk (do you see where this is going?) so I just thought I would jump over them. Well all was fine until when I landed my right leg just buckled underneath me!  I went flying and luckily landed on my hands and one of my knees before the rest of my body came crashing to the ground. I looked like I was sliding into third base only much less graceful and I am sure I made a big guttural noise. I hopped back up to see if anyone was out to see my gracefulness. Luckily I didn't see anyone.  Could this day be any more lame?  I called Lance to tell him we were going to the doctor and I told him that I had fallen. He asked if I was ok and then he said "second question, did anyone see you?". Aww sweet love!
Tatum did really well all the way down to the doctor. Her sats were ok. When we got into the office I could hear her getting more and more junky. They brought the suction machine in. Her sats dropped dramatically and so they increased her oxygen. At this point I knew what was going to happen.
We headed over and got settled. They did an X-ray to see if her new nj tube was still in the right place. It was but she had a lot of stool in her bowels. So that is what we are trying to help her out with now. She had a little bit of a rough night but is now resting well. We are trying a few things to get her bowels to start moving and hopefully help her get to next Wednesday to get that new tube.
My mommy heart just aches for her. I just want her to be comfortable. I know that eventually one of these "issues" will be what helps her to the other side. I just want to be able to have a little more "good" time with her. I am just not ready to have her sweetness out of our home. Who am I kidding I will never be ready for that.  I guess I don't really get a say but I am hoping for some more time

So now we are praying for poop!  I'll bet not many of us have prayed for that. Join me. How can Heavenly Father deny that right?  Oh, and no more aspiration and less secretions. Am I being greedy now?  Thanks.


  1. We love you and will be praying for poop! GOOD LUCK my sweet friend and I hope your fall didn't cause any injury!

  2. Poop it is.

    Please let us know if your family needs anything - especially Halea. I have a daughter (and me) that loves her very much and wants to help but is not sure how to. We would love any suggestions...

  3. You got it! Praying for poop! Wish we were there to help in some way! Love you all!

  4. Hope you didn't hurt yourself too bad. We'll pray for poop.

  5. Praying for poop! I hope you are okay. <3 <3 Prayers as always!

  6. I have done the praying for poop before. I will be sure to keep you and Tatum in my prayers. Prayers for more good days together too. Love you Heather! She is such a beauty! -Teri Simpson