+1680 - "Is this all I take?"

"Is this all I take?" These are the words I have been waiting to hear from David for a long time! Tonight he only had to take one diuretic, and steroids. That's it! Could it be? Help me with my disbelief!

He came home from the hospital on Friday. The past two weeks:

1. Spinal tap to check the spinal fluid pressure because of the Psuedo Tumor Cerebri.  He was poked three times.  The first no reading.  The second had an opening pressure of 15 which is normal but the doctor did not believe it.  The third poke also showed an opening pressure of 15.  Good news is that his spinal pressure is normal!  Yeah!  So the eye doctor will just be checking the swelling to see if it's going down.

2. Spinal headache

3. Strong pain meds for headache (Tylenol with Codine did not help much so we went to HydroCodone which is three times as strong.)

4. In-patient for headache for 2 days, goes home

5. Feels good so we go to church and San Francisco to celebrate Ariella's birthday

6. Next night, he throws up, very bad diarrhoea, and headache again

7. I give more pain meds and hydrate

8. BMT docs want to admit him.

9. He stays three nights at Stanford. They diagnose him with a GI bug that is not serious and rebound headache. The doctors stopped all pain meds, we used ice packs, sucked on ice chips, and hydration.

10. Back home and doing pretty good.

Meds:

.45ml - prednisolone twice/day

.2ml - prograf once/day

2 Diamox pills twice/day

4ml Septra - Mon, Weds, Fri (this is a new change.  He used to take this antibiotic every day)

Hydrocortisone ointment - all over body once/day

Desonide ointment - on face once/day

Memetosone ointment - hands and feet once/day

He will see the opthamologist on March 17 to check the status of his Psuedo Tumor Cerebri .  We are hoping it is resolved or looking much better.  The swelling could lead to blindness.

Things are looking better even though he has occasional set backs.  We were told if he ever gets off immunosuppressants, it will be another two years before his immune system is fully functioning.

Thanks for your prayers and encouragment!

-Aimee