Wednesday, April 15, 2009

Very Good Appointment

Well I believe we are happy with our appt today. I am very happy when
doctors listen and don't assume.

We discussed Haven's diet, which is, under 1000 calories, no sodium, low
cal, no sugar, limited processed food.

We discussed her sleep issues briefly and there is a concern of her
sleep walking and being hooked up to monitors.

We discussed briefly our process of finally being diagnosed. He
couldn't believe we were only told that we were overfeeding her for an
entire year and three different hospitals and 4 MRIs. Not an acceptable
diagnosis.

We talked about how the doctors at JH found her cancer and ROHHAD.

Sleep studies were talked about and I believe he kinda agreed with me
that one sleep study with partial sleep is not enough for Haven because
she doesn't really sleep anyway. But we'll meet with Pulmonary tomorrow
to discuss all the breathing and sleeping issues.

Haven's heart was a bit high today when they checked. She also had an
Echo done. We will pick up her heart monitor tomorrow. She will wear
the holter so they can get a constant reading of her heart.

The doctor told us if she goes into the 140s its ok AS LONG AS she drops
to the 80's or so when sleeping. He wants to see a lot of variations in
her heart at different times of the day. He is happy with her blood
pressure medicine. But said a constant high heart rate is to much
stress and causes damage eventually leading to failure.

Haven did very well. She is always a bit freaked out when doctors push
on her belly. She doesn't like them messing around her scar. Which, by
the way, her scar across her belly is healing awesomely! You can just
barely see it and it stretches across her entire belly. Her port scar
is still pretty visible.

Will update more later!

--misty_vassago

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