Dr visits for Eve

Yesterday, Eve had followup visits with her GI and Neuro.  Here's the run-down:

GI - She's looking good and tolerating her feeds well.  Her tube site looks great.  I'll have to call the hospital the week before her GJ tube change, because there have been issues with patients not having a tube available when they show up.  The doc is pretty mad about it.

She's 49lbs 6oz and 3 feet 8 inches tall.  She's 5-10%ile for weight and less than 3rd%ile for height.  I mentioned how her tummy hangs over her pants and how her hands are so plump, there is no definition of knuckles on the back of her hand.  She's getting about 800 calories a day right now (the doc originally wanted her on at least 1200 calories last year).  He said they use a calculation to figure out how many calories a child needs, and if there's a mistake, they usually give too much food.  Which is the way to go if you are going to make a mistake.  So he said we can do a resting metabolic rate test.  They put her in a little oxygen tent and measure the oxygen she uses (and I really have no idea what else) and it will tell us her caloric needs.  Here are some pictures of the last time she had it done.  She was NOT happy about it, obviously.  I think this time she will do so much better.  Anyhow, we were able to schedule this test for the same day we go back for her tube switch (in about 3 weeks).  I'm pretty confident it will show she's getting a little too much food right now.  Nothing major, but I don't want her to slowly put on more and more weight and get uncomfortable.  She's totally sedentary and her disease is all about a lack of energy, so the calories are just not getting burned. 

Neuro -  We then had our neuro appointment.  I mentioned my concerns, namely the increasing pain and muscle spasms.  He is switching up her med schedule in the afternoons.  We're adding a 4th daily dose of Valium.  We also talked about when to use morphine.  I've been so apprehensive to use it because I'm afraid I'll be using the morphine to treat something more trivial.  His advice was to just use it.  The goal is to keep her comfortable and I shouldn't worry so much.  He said it will take away her pain, not make her high.  He also said she's not even close to the "safe" dose for her weight, so I don't need to worry about doping her up.  It was super comforting to have that worry of the decision taken from me.   I can just give her the morphine and not worry.  So, that's good to know. 

I also mentioned that she can no longer cry (it's been about a year and a half since she's done it) and that she's lost one of her reflexes in her feet.  We talked about how her cheeks suddenly get red (or just one will) and how her feet can be ice blocks or really hot.  He said that's part of her autonomic system dysfunction.  He examined her and noted the changes.  I told him we are going to Boston to see the mito doc in June. I  mentioned a tremor that we've noticed in her stomach when laying flat.  He said it's Clonus (a reflex-like tremor that's part of her neurological dysfunction) like we see in her legs and feet when you bend her foot back.  I also mentioned how she has lost virtually all speech.  She very rarely says  Ah (yes) anymore, and I don't remember the last time she said uh-uh.   He wants to see us back in 6 months. 

Eve was super excited to see her neuro.  She just loves him.  She was squealing all morning and even "drew" a picture for him at school.  He said he's going to hang it up in his office.   All in all, it was a great visit.  I'm happy about the metabolic testing and I'm hopeful that adding another dose of Valium will help to keep her pain in check.  If not, I have the morphine.