Why do I always cry

Yesterday Ellie had two appts at Primary's (nothing to do with her surgery).

First we had Dysphasia (problems eating) meeting with the Gastroenterologist and the Dietician.  Several things happened...First, she had a MASSIVE blowout laying the table...I mean it was running out of her brief and down the sides of the table.  So the Dr. scooped some up and sent it to test for C-diff (it often happens when the antibiotics kill the good bacteria in your gut and it allows the C-diff (bad bacteria) to take over).  Second, she has gained 4 pounds since her surgery.  She is now up to 67.6 pounds.  This is not a good thing (for me).  She is still within her weight range, but "the heavier the harder".  I am assuming a pound or two is from the actual rods themselves.  But other than that, hopefully she slows down.

Then we met with Dr. Murphy in  the Special Care Clinic (for complicated kids like Ellie).  I can't help crying when I meet with her, and all of the other special needs Mom's I know say the same thing.  She JUST GETS IT.  She gets how hard it is to have a child like Ellie, she sits there and listens to you for HOWEVER long it takes.  She cares about the parents and the home-life, not just the symptoms, solutions and diagnosis.  I JUST LOVE HER!

We talked about Ellie's pain, her bulge, her tight knees/hips/hamstrings, her surgery, her infection, some medical equipment I need to get for Ellie, Dr.'s I need to get in to see, etc...

She thinks that her pain is neuropathic pain and suggested she take a med call Neurontin for 3-6 months.  Neuropathic pain is nerve pain when there is damage to the Central nervous system.  She thinks that it was caused by manipulating her spine so much (with the surgery) .  I am all for it.  Ellie can't hardly bear to lay on her back and she does not like to lay with her legs frogged out anymore (we have to support her legs with pillows now, and she just tightens up everytime you touch her.  I hope it helps because so far pain meds haven't...either it does nothing, or it knocks her out.  It is a safe drug with virtually no side effects.

I really wanted to get Ellie in to see Dr. Klatt or even another orthopedic surgeon while we were down there, but the nurse never called me back.  Yes, I get it Dr. Klatt is in surgery all day.  But can't you sneak us in to see another Dr.????  Or call back to say there is just no way.  If I truly wanted to see an ortho doc I could just go into PCMC (Primar CHildren's Medical Center) ER (Emergency Room) and they would send at least a resident to come look.  I wasn't that desperate, but I was really unimpressed and put off that she didn't call me back.

Dr. Murphy took a look at the bulge and agreed that it was a seroma (that the outside of the skin had healed, but the inside hadn't yet, so her body sent fluid to fix the spot).  But just to be safe (and I think to appease me) she called Dr. Klatt and talked to him.  He felt comfortable with that also.  So having a Dr. look at it eased my mind.  And I was grateful she called Dr. Klatt.  Dr. Murphy thought it would be a good idea to have her wear an abdominal binder (like you wear when you get baclofen pump surgery), Dr. Klatt thought that sounded like a good idea.  And thankfully I am a pack-rat with medical supplies, so I happen to have 2 of them.

That is all for now, she is going to school, doing well and hopefully we can keep in control of the seroma (bulge) and it won't escalate to anything more.