Friday, February 6, 2009

Haven's ROHHAD Update

Well as noted last week her levels were high again. By Tuesday this week, with the reduce dosage, she is back at a normal level.

She has been at the hospital since 7:45 this morning being examined and getting her levels taken again. There are a few notes/updates:

Sleeping: Haven has been extremely difficult to wake up in the morning suddenly. It has taken us about 15 minutes each morning to get her to open her eyes and wake up. She is also taking about 4 naps a day and they are spontaneous. She'll be in the middle of a sentence and just fall asleep and she'll sleep for 1 to 2 hours each time. We are scheduling another sleep study for March.

Swelling: Haven's doctor finally saw her swollen feet, ankles, and legs today and was very concerned. They are so swollen she can barely wear shoes and can't fit in her socks. She can only walk for a short distance before she is tired. They are scheduling a special ultrasound to monitor the blood flow in her legs next Friday.

Blood Pressure: well the chemo she is currently on has a risk of high blood pressure and I was concerned about this when we started but she is on medication for HBP already so we figured it would be fine. Her BP was really high today so the doctor is urging us to have a BP monitor at home and to check her every day and make a record of it.

Feb 12th surgeon: OK - I had this wrong and so did Kris. This is not for the tumor on her back - this is for her spine. She has had intense pain in her lower back and will sometimes fall to the floor in the middle of walking due to the pain. Then we can't move her for a while - she just lays there grunting.

Pulmonology: we will be checking Haven's blood gasses while she is under anesthesia during eye surgery. They will stick a long needle in her wrist to get down to the main artery - which is located somewhere in the center of the wrist. It's not the small veins you can see.

Audiology: we missed this appointment so I am rescheduling this one.

Spot: what is this spot? I don't know but it's about dime size and it's on the side of her head. It's red and brown. Now to me it is odd - it's definitely not a freckle as I have been told by the doctor. Haven has a small Hemangioma on her shoulder that she has had since she was a baby. Now the amazing thing I found out while researching is that in certain places - like the head - it can sometimes be a sign of Paraneoplastic Syndrome! ODD? STRANGE? This is one of Haven's diagnosises.

anyway - there are the updates I can remember - I have a BILLION doctors to call and email.


  1. Josh had a place come up on his head after his 1st hospitalization when he was 8 years old. It looked like a deep wound with something protruding out. He lost some hair around it which never grew back. Doctors never did figure out what it was.

  2. Really....I have never noticed this on her before and it's only because her hair is thinning and I had it in a ponytail that I noticed it. I am definitely going to be watching it. Thanks for letting me know.