Reflections Before Surgery

It is the end of August and Bailey is finishing up her second week at girl scout camp.  I have not heard anything from camp so her tube must be holding.  Only 4 more days until her surgery.  I am not sure how her weight is holding up.  She lost a half a pound at camp last time, so they were going to add an extra feeding a day to increase her calories to make up for her increased activity.  At last weigh in before sending her back to camp her weight was up to 66.

It sounds like the other girl scouts adjusted well to Bailey's tube feedings.  Bailey decided to have her tube feedings in the mess hall while the other girls were eating so she could sit with her unit rather than going to the nurses office.  I am amazed at how well she has adjusted to all of this and how she is willing to put herself out there.  She seems to have so much more confidence.

The staff has also been amazing.  On this leg of camp, Bailey had an overnight hiking and camping adventure away from the main camp and the staff really took time working out the details so Bailey could go with her unit and still get all of her feedings in.  Lemonade, the camp cook even dehydrated cherries for Bailey to snack on during the trip.

I do look forward to having her home tomorrow.  Even though I know she needs to have these experiences, it is really hard to have her gone with all that is going on.  I am not looking forward to the surgery next week.  I know it is not a huge deal but I started watching some videos on youtube and I am a bit freaked out.  I really hope I can step up and be vigilant on properly caring for her with the new tube.    I guess it is more the fear of the unknown.  This is all so new and so different.

If I really analyze what is bothering me, it is the pain and discomfort she will have to endure.  The pain will be short lived, the worst of it being over within a day or two. But we work so hard to protect our kids, to raise them with a level of innocence.  And in a few days, a bit of that will be taken away.  And it isn't that she hasn't already suffered pain.  Eating food causes plenty of it.  But it's not the same.  This is pain I am allowing.  I really hope I am making the right decision and this is the best for the long term.  I hate this disease and what it does to her.  I just have no idea how to fix it, how to make it better.  This is one thing I cannot kiss and make it better.