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.

ROHHAD and NEUROBLASTOMA Update on Haven

Currently - I just wanted to update everyone on what we're doing and what we're waiting for.

Through the holiday break we have slowly been decreasing Haven's dose of steroids and will end on January 1st. On January 2nd at 8:00 am we will have blood taken at JH to check Haven's Cortisol levels. I am hoping she is producing Coritsol on her own and we won't need the steroids.

January 13th - Haven will go in for Chemo and meet with her doctor to discuss the future treatment plans. We are waiting to hear if we will go back on Rituximub (chemo) for another 6 months.

January 15th - Meet with Pulmonology at 8:30am to evaluate Haven's breathing - really I don't know what they do. This will be the first time we've seen Pulmonology since our initial 10 day hospital stay in October 2007.

Setting up an appointment with Audiology - WHY? Josh lost his hearing after being diagnosed with ROHHAD. So since we know very little about this syndrome we are getting an initial marker on Haven's hearing and will be able to watch if it starts to decline.

Still waiting from Haven's eye doctor - I've called 3 times and haven't heard back. I'll call again after the holidays. Now that she is going to be getting more chemo I'm not sure if it's the right time for surgery. Haven's doctors will have to tell me on Friday.

Christmas photos are coming! I have so many projects in the works right now I barely have time to do anything!

OH - had some CRAZY doctor dreams over the break. I remember one very clearly.
-- Haven was in a lab room (all white of course) with lots of doctors. They frantically tell me that Haven now has Hypoxia. I was upset (although when I woke up I didn't know why) and I kept asking them how do they know. They kept telling me "it's on the list". I was crazily searching for the list and they had it on the white board and were check marking Haven's symptoms - just going down the list. They kept telling me to look at the list over and over. --

I woke up and searched for my list. Hypoxia is NOT on the list. I was't even sure if it was a word or medical term. BUT it is!

HYPOXIA: is a pathological condition in which the body as a whole (generalized hypoxia) or region of the body (tissue hypoxia) is deprived of adequate oxygen supply.

Haven does NOT have Hypoxia! Whew! :)