Monday, January 10, 2011

A Little Setback

Today was my big day -- or at least the big day we've been waiting for before we can come home.  It was Expansion Day!  Or so we thought.

Our last update was Thursday (today is Monday), and I had just gotten new stitches to repair the skin that split.  Well, we made it through the weekend with NO problems.  Everything looked great the last time mom and dad changed my dressing.  Then we went into the doctor's office.  As they unwrapped my dressing for (what we thought was) the last time, we found that my skin had split AGAIN!  In the same place.  Seriously?  It was perfect just 24 hours ago.

Now, for the really ironic part -- the OTHER side had a problem too; a totally random problem.  The expander on that side folded into a point right underneath my incision.  This caused a big, hard lump under the stitches, and put them in jeopardy of the same "splitting" that happened on the other side.

So, there was very little expanding today. 

We did get a great lesson about what we will be doing when I heal up, but until then, we will be a bit behind in expansion.  We also have to continue to change my dressing on a daily basis until my skin is healed. And my activity has to be significantly restricted until then as well - about another 2-3 weeks.  I think we're going to get a bit bored!

To give you an idea, when we get rolling, mom and dad will start slowly, but lead up to filling two 60cc syringes per side, and aiming to get at least 3/4 of that in on a good day (90cc).  Today, we got 10cc in the side that split, and 15cc in the other side.  But at least mom and dad got to see and experience everything with the medical team present, so they will be ready when they are on their own this weekend.  Ultimately, the goal is to have about 700cc of saline in each expander when we are finished.  Those are going to be big!  Now, we're not totally behind because Dr. B put 75cc in each side after surgery, so he gave us a bit of a head start.  We're close to 100cc in each, and have 11 more weeks to work on it.  They also said that if we get really behind, we  may be able to expand more than once a week toward the end.

Here are a few pics from today's appointment...

So excited to get these tubes out and start the expansion process!

This is an example of the port that's under my skin where we inject the saline, and the needle that we use to do that.

Just after the first expansion.  You can see my bubbles getting bigger.
Now, we did keep ourselves pretty busy over the weekend, doing a lot of fun stuff.  It snowed pretty good again, and my sissy finally got to go out and make her snow angel.  She loved being in the snow, and practically had to be drug in.  It's too bad there wasn't enough snow to make a snowman, but maybe we can do that on the next trip.  We also got a nice visit from grandpa, who drove down from Wisconsin, and I got to spend more time with my buddy Zac.

Snow-Angel Action

Loving the snow
I am super excited about something!

Sissy and grandpa coloring

A best friendship blooming
Ultimately, we are a little disappointed with where we stand before heading home, but we remember this is only the beginning.  A lot can happen over the next 3 months, and a lot can happen during my next expansion.  We'll just pray for the best and push forward, and remain thankful that I can even receive this treatment.  I am very lucky, and we will never take that for granted.

1 comment:

  1. Have a safe trip home. I am so happy you are through phase I!

    ReplyDelete