Surgery Consultation

Of course, just days before Ellie's scheduled surgery, Mike gets diagnosed with strep and the rest of us have come down with what seems like a cold.  We were really concerned that this next surgery might not happen when we thought because any symptoms that Ellie has are always exacerbated.  The fact that she had a fever and started to have some breathing issues made us think they would postpone the surgery because of the anesthesia and being intubated again.

Ellie's cardiologist and the home speech therapist briefly mentioned the possibility of Ellie having a G-tube placed in the future because her NG-tube was only supposed to be temporary but her feeding problems have persisted. From what I have read and heard Ellie might progress more if she had the NG tube removed so that she can breathe, swallow and eat normally (although at this point this is what she probably thinks is normal!).  I called our pediatrician to see if having the G-tube placed would be a good idea while she is undergoing surgery.  I'm glad we spoke up about getting a G-tube because the surgeon, Dr. Downey, said that now is the perfect time to place it and she definitely needs to have one.  In the past I have felt like this surgery was going to be a breeze compared to her heart surgery but after what I learned today it is still going to be complicated and the procedure can't be done laparoscopically like we had hoped because of her complex anatomy.

The misconception about her malrotation is that it really should be called a malfixation because the attachment points are not attached in the correct places which can cause the rotation.  In Ellie, the food goes to the stomach on the left side and down to her small intestine which is more towards her midline instead of on the right side of her body.  They can fixate the intestines by allowing her own body to develop scar tissue but if the scar tissue doesn't form in the correct places they will have to go back in to surgically correct it.  Let's hope that something will go right for Ellie for once.  While they are in there they will also remove her appendix so there is no question where it is in the future should she need to have it removed.

The other complication of the surgery is that her pacemaker is close to her stomach where the G-tube needs to be placed.  Then upon evaluating her Dr. Downey noticed that her pacer wires are directly over the place where they would position the G-tube.  He consulted with Dr. Burch and have come up with a plan for tomorrow.  We'll see how it goes.

It has been a roller coaster kind of day where one minute we think Ellie won't be having surgery, but then the next time we talk with someone else she they think she is okay for surgery.  We have been wanting to get this surgery over with but aren't looking forward to her week long  recovery in the hospital.