Saturday, March 19, 2011

Saturday Fun (and Not-so-fun)

In order to refocus my energy this evening, I'm going to start this post with the FUN parts of our Saturday.

After 10 LONG days, we finally got to see this little beauty today!

Miss A is definitely cutting those top teefers.  Poor thing, she's only pushed one just barely through the gum.  That didn't keep her from sharing some smiles, hugs, waves, "mama", and "dada"s with us today though.

We sure needed some fun time with our little Ladybug today.

Thanks for bringing her up today, Mamie & Aunt Alex.  Sorry Keegan slept through your visit!  I can't wait until she can see her brother again.  Now those will be some big smiles!  Once Keegan was up this afternoon, we got special permission to take him down to the hospital garden for some fresh air after being stuck in bed in his room for 10 days.

It took awhile to convince him to walk on his own, and when he did, it was pretty awkward.  We took quite a few breaks to watch the clouds, count flowers, and admire the glass fish in the relection stream.

There isn't a lot of time for moments like these in life in general and especially when you're inpatient.
So when you can steal away and be still together, that's when memories are made.

Well, that was a nice beginning to the post.  Now for the not-so-fun part.

We tried to increase Keegan's tube feeds to 20cc/hour today (that's about 2/3 of an ounce over an hour).  It did not go well.  At all.  Since we switched him to half-strength elecare formula on Thursday, the volume of diarrhea hadn't increased, but the "quality" (for lack of a better term) wasn't improving either.  We had been saying he was "tolerating" the feeds mainly because of the volume aspect.  Since there wasn't any improvement (and you can't really get worse) in the quality aspect, we started the IVIG trial.  Yesterday was about par for the course with an increase from 10cc/hr to 15cc/hr.  So with the IVIG on board today, we decided to try for the 20cc/hour increase.  I tried to ignore the fact that the volume was increasing as the day progressed.  I tried even harder to ignore the multiple accidents that occurred.  But by the time I was changing the sheets (despite multiple layers) and Keegan's tshirt for the third time this evening, we cried mercy.  We gave him an hour break completely and then restarted him back on 10cc/hour.

Three steps forward, two steps back.

If only this hospital had a padded room available for parents.  I guarantee you there would be a line to use it every hour of the day.

I'm not sure I am even capable of putting my exasperation with Keegan's intestinal issues into words.  And I'm only concerned with Keegan's tummy.  I can't possibly imagine how these GI doctors deal with this in so many kids every single day.  I know they don't have any more answers for me than I can give myself or you tonight.  I don't know what we will do tomorrow.  I'm even less sure of what to fight for at this point.  Back off more?  Stay the course with trophic feeds?  We can't sit here and wait forever.  That's simply not an option.  But I'm not sure what is anymore.  I know we have to at least give the IVIG a fighting chance, but how we do that over the next three days is yet to be determined. 

My comfort for today comes from Keegan's resilience through it all.  He is so used to his tummy feeling like this that it rarely seems to bother him.  He has his moments where he curls up in a little ball, buries his head in the pillow, and shuts down for a minute.  But in the next minute, he's bouncing up and down on the bed, mimicking every word on his episode of Curious George.  He has no idea that this is not normal, and he refuses to let it interfere with his fun.  And for tonight, that's enough for me. 


2 comments:

Lorin said...

LOVE the picture of you two laying in the grass together!

Stacie said...

I too love the grass pics. Thanks for sharing.

My friend, Joy, has three girls that have all been diagnosed with mitochondrial disease. The youngest has the worse symptoms so far. A few weeks ago she got rotavirus and pretty much a VERY similar path with all of the GI issues. Getting feeds back up was pure torture!!! Check out her blog at www.roehfamily.blogspot.com if you are interested in reading more about that.

Praying for you all. Hang in there.

Much love,
Stacie Smith