February 7, 2011, 1:08pm.  For six weeks we have planned for this day and thought we would be finished with yet Maggie's third endoscopy and the new insertion of the ng tube.  For six weeks I have gone from sadness, to acceptance, to fear, to sadness, to wisdom and finally acceptance and readiness to begin this journey.  Back on December 29th we were told Maggie would need an ng feeding tube to supplement her eating because her weight and height had leveled off for 9 months.  We have been trying an appetite stimulant since with early success but nothing lately.  I know now this is the right thing for her to grow and thrive.  I actually came to a point of looking forward to it.

CHOP has been wonderful getting us ready as well as my many extremely supportive friends, especially those who have been through what we are going through now.  The plan was going to be perfect:  today would be the scope in the OR and they would place the tube while she was under anethesia.  Best you can get when it comes to this.  Then a stay in the hospital for a few days to adjust and get trained.  Friends have been amazing!  Everyone helping where they can and had everything lined up.  Best laid plans right?  You guessed it, a wrinkle, a big wrinkle!

Last Thursday, Maggie started getting a little stuffy, then woke Friday with a low grade fever.  Still hopeful, we have her until today to get better but she has a higher fever and a cough.  The plan, the hope for today melted away as I made the dreaded phone call to cancel her procedure.  I had prayed and others had prayed and prayed!  The highlight though was when the phone rang at 8:00am from CHOP...rescheduler?  No, Dr. Grossman himself to checkon Maggie and see how she was feeling.  We talked options like having her come in for the tube anyway, but the virus she has would cause her to be isolated so that didn't sound good, or wait.  After a very nice conversation we both agreed to wait until she feels better and call the scheduler.  He truly expressed his care for Maggie and understood our disappointment.  I hung up at least knowing that he will do whatever is best for her and we are on a team here.  Now if only the OR was on our team.

Next call to Lisa the scheduler...been here before...me, "Dr. Grossman needs us to reschedule as soon as we can."  Lisa, "We can get her in March 4th."  WHAT?!  I can't go through 4 more weeks of waiting for her to get what she needs and for us to know what is going on inside her.  And I can't wait 4 more weeks for another virus to come along and postpone it again.  I am now praying on Dr. Grossman and that he can work something better out for us. 

In the meantime, I guess I will be back to work but I am scared to send her back to preschool to catch another bug.  Does FMLA cover prevention of further illness? ;)  Oh I am just in so many places emotionally right now.  First I was scared for her to get her ng tube but after finally coming to terms with number one, this is a chronic illness, 2, she really hasn't grown and 3, I know our doctors are the very best and she will be better for it, I am ready.  It's like standing at the starting line for a race you've trained a year for and the damn guy won't fire the start gun!