Tuesday, February 24, 2009

Doctor update

I finally talked with Haven's doctor today about most of her testing. Here is what I got in the not-so-medical version. It was a lot to take in so hopefully I can remember most of it.

Cyclosporin levels : Haven was at a high toxic level today. We have been told to not give her the chemo tonight and to do a partial dose until she comes in for her next visit.

Bone Density Scan: she has a pretty significant bone loss in her hips and some slight loss in her spine. She could easily fracture her hips if she were to fall or something. Since she doesn't feel pain unless it's extreme we may not know if she does fracture it. So we're going to be watching her. Endocrine will be contacting us to start her on medication to help build up her bones.

Sleep Study: They are rated 0 - 4. Haven is a level 2 right now. Level 0 is perfect sleeping and level 4 is an emergency. She has quite a bit of snoring - but the gas exchange was not affected. So for now they will attribute it to weight instead of Hypoventilation but she must be watched. We will need to meet with Pulmonology to review and do all follow-ups. Oncology was not clear on a lot of the report. He said there was quite a bit in there this time. He did say her brain wakes up about every 15 minutes or so but her body does not. Her brain is malfunctioning between sleep stages and she never hit REM sleep.

Ultrasound: Arteries and veins are clear and there are no clots in the legs.

Still waiting on a few more things and preparing for surgery. I have been collecting as much data as I can from other moms to help our doctors.

Haven will have an ABG - Arterial Blood Gas count during surgery. I asked why other children can have their fingers pricked to be checked but Haven has to go to the artery in the wrist. Explanation: ABG is the only test that is the most accurate for blood gas results. Someone who may be stable or on a ventilator may only need to check by finger. But by finger will never get accurate readings. They need to get the most accurate reading from Haven for a starting ground.

Oncology warned me that she will be in a lot of pain from the ABG. He said (quote) "It hurts like the dickens". So she mostly likely won't want to move her arm and definitely won't want to move her wrist around for a while. But with lowered pain sensors I'm hoping she is not too bad.

Anyway, I am tired and the phone call today gave me an instant migraine. American Idol is not on so Haven is off to bed and we will have our "party" night tomorrow.

Love to all.....anything else I get I will pass it along! :)

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