Tuesday, May 8, 2012

2 Days Down...Many More to Go!

 So here we are in New York.  Yesterday our flights went good, to not go into any detail.  I attribute it all to three things: 1) Ted and Jeanne Endsley and 2) Camille Rubsamen for making amazing snack and game packs for the boys and 3) the amazing ratio of 3 adults to 2 kids! 

The biggest downer of the day was arriving to our apartment and finding no crib for Case.  It was a rough night of him sleeping in the corner of the room in a "fort" (i.e. night stands turned on their side blocking him into the corner!).

One of the few smiles from Case today with his "IV cast"

Tonight Case is sleeping in a crib, no thanks to the people who were supposed to provide it.  At 6 pm tonight I decided that enough was enough, so I hopped in a cab, rode to the nearest baby store and bought a portable crib (even though we already own one in Texas).

Today was a super long and rough day at the hospital.  We met the surgeon, Dr. La Quaglia, and the oncologist, Dr. Kushner.  Love them both.  Nothing new really to present...just that we don't really know what day he will have surgery...hopefully soon. 

The rough spot hit when they tried to draw blood from his port.  They could inject fluid into the port, but couldn't get anything out!  So we first thought it would be a blood clot (although he was accessed 4 weeks ago and it shouldn't be a problem).  So we went through two rounds of injecting a medicine to sit in his tubing for one hour to dissolve any clots.  Neither of them worked. 

So then we went in for an X-ray to see if his tubing came out of the vessel it was supposed to be in.  The X-ray was so absolutely horrific!  They put him in a contraption where he sat on a mini bike looking seat in a hole in a table.  So his waist was at table height.  Then they put two halves of a clear plastic tube around him with his arms up and latched it together.  So from his waist up over his arms he was in a straight-jacket of a plastic tube (to keep him still so they could get a picture of his chest).  It was like Augustus stuck in the chocolate tube in "Charlie and the Chocolate Factory," only with his arms over his head.  He was irrate, and screaming, and it was HORRIBLE to watch!  Seriously one of the worst things I've been through with him.  But it was short...about 3 minutes.

The X-ray showed the tubing in place, but after replacing the port access, still no blood return.  So they finally had to do an IV in the crook of his arm.  He still has it in now.  They wrapped it all up with a board attached like a cast (you can see that in the pictures).  They will use that IV in the morning to sedate him for a CT scan and 4 bone marrow biopsies (front and back of both hips).  So we got home at about 4 pm.  If the port had worked, it would have been 11:30.  He napped for 30 minutes in my arms.  It was a bad day.

The boys were happy this evening once they were back together.  They love each other.
Graydon and Granddad played in the hospital playroom and on a city park for 2 hours.  They did pretty good.  I can't take ANY pictures in the hospital, so there won't be much photo documentation.  Let's pray that they can figure out what's going on with his port!

p.s. the city is so noisy!  Our windows open up onto a busy street.  It will take some getting used to!


  1. Oh Emily, this is just plain HARD! I'm so sorry you have to go through this! But just remember "what doesn't kill us makes us stronger!" And your family will be incredibly strong by the time this is over. We are thinking and praying for you guys constantly. Can't wait to get there to help you out in any way we can. Bummer about no pictures in the hospital! I had big photo plans! Love you all!

  2. I thought of you guys all day today. Praying here and there... Thank you so much for the updates, I don't want to call and bug you- I know how busy you'll be. Always feel free to call me if you need to chat about something. Love you.

  3. That sucks. Sorry you guys had a rough day. Your description about Augustus Gloop made me crack up, though! (Pic)

  4. I'm so sorry. It makes me so sad to hear the extra trials on top of an already monumental trial. You are in my prayers. High five to Case for giving them all he's got. Keep up the good work, little man!

  5. No fun!! So sorry it has been so rough! Can't believe the whole 'no crib' thing! But it sure fit with the day you were having already, huh?! ;) We are so grateful for the updates. We think about you every second and are praying every chance we get! Hopefully the kids pictures brought the boys some smiles. Love you guys!!

  6. Hospitals can be tough places for any of us, yet alone the little ones who don't understand. Sorry it is such a challenge. Hope things get better. We'll put Case on the prayer roll.

  7. Em, Thanks so much for the updates. You're the first thing I check each morning and again each night. We are praying for ya'll!!! Know you are loved and held tenderly in our hearts. Cindy & AJ

  8. Em thank you for the updates, as soon as we wake up every morning we check the blog. I'm so sorry to hear about your rough day. I've been thinking about you guys all day. Oh how i wish we were in NYC right now to help you. The pictures are so so cute, Case looks so healthy in them.
    Hugs to you all,
    Mary-Jane and Kea