We seem to be doing pretty well.

Last week, Eve continued to have issues with retching.  Last Sunday was particularly bad.  So, the GI sent us to Springfield to have a tube study done (radioactive dye through tubes to make sure they are functioning) and to meet with a pediatric surgeon to talk about a j-tube surgery.  The tube study showed everything working fine.  The surgeon said no to the surgery.  He said it should be a last resort thing and that it will open up a bunch of things that could go wrong.  He felt there were other studies that could be done and medications that could be prescribed before doing that surgery.  So, he sent us back to the GI.

Thursday we went back to Springfield to Shriner's Hospital.  We had made an appointment with the orthopedist to talk about her dislocated hips. Since we made the appointment (August), her hips have become the least of our concerns.  Since the way to fix this would be surgery, there is nothing we can really do.  The doctor and I agree that there is no sense in putting her through that extreme pain, especially when her comfort and quality of life is paramount for us.  That was a hard appointment to be at.  It's tough when a doctor just strokes your child's cheek and looks at her with sadness.

I finally was able to talk to the GI late Friday.  I asked him if we could reduce her feeding rate.  I truly believe that he was pushing her too much.  There's no sense in getting so many calories that she spends her days retching if her body can't handle it.  So we backed off the rate and so far so good.  She isn't retching (other than from too much mucous in the morning) and is gagging much less.  The next thing we are going to do is get her on an elemental formula.  It's a formula that is broken down and easier to digest.  The GI didn't think it would work, but thought there was no harm in trying it (it was my suggestion).  Finally, he wrote a prescription for an antispasmodic to help with the retching.  We will change one thing at a time, but I have the medication on hand if I need it.  If Eve does well with the elemental formula, we will try to ramp up the feeding rate a bit.

In the meantime, Eve had another one of those intense pain episodes last Wednesday night.  She woke up moaning and crying in pain.  It was so sad.  We gave her extra valium and it really didn't seem to help.  Eventually, it passed and she quietly moaned for the next hour or so.  She got more (scheduled) valium and slept for a bit and woke up screaming at 12:30am.  We called the Neurologist and he had us give her even more valium and some Tylenol.  We then talked about how our goal is to keep her comfortable.  So, the next time this happens, we are moving to morphine.  The neuro is having our pediatrician manage the morphine (we need to pick up the script in person and this way she can monitor Eve because she is local).  We met with her on Monday and talked about this.  So, for now, she will get the tiniest amount (short acting) as needed to help with these episodes.  Eventually, if things get really bad, she may be on a scheduled longer-acting dose. Eve has fine since the last episode. This seems to happen every 3-4 weeks. 

In other news, we should be getting our new wheelchair van at the end of the week (fingers crossed)!  This will be totally life changing.  Totally. 

So, I am feeling a bit more comfortable and stable.  Eve has been smiling and laughing.  Today she was in a parade at school dressed as Curious George and had a blast.  Her top right tooth is loose.