Thursday, February 14, 2013

2 1/2 weeks... Going Home...

I should be getting out tomorrow (fri) after another marathon 3 1/2 weeks in-patient stay. This roller coaster of emotions while waiting on responses related to other drs Dr.Bragg has reached out to is really hard and by far the hardest part of this disorder.     ... So far we've heard frrom Patti Dickson regarding the IT and she gave me her cell # to pass along to Dr.Bragg to have Dr.Bragg call her. I passed that info along to Dr.Bragg and she was going to try to call Patti in between her clinic this afternoon or otherwise this evening and said earlier today if she did connect with Dr.Dickson she would try to stop over and see me tonight and let me know what they talked about. I assume because I didnt see Dr.Bragg that she didnt get a chance to call Dr.Dickson or left a message and they didnt connect. I am really, really to see Dr.Bragg in the morning and that she will have had a chance to talk to Dr.D and have some thoughts on out next steps.

On a slightly different note when I asked Dr.Bragg about if placing a CSF reservoir to remove extra CSF to relieve the "left over" headaches she said it was a possibility we could conside and possibly do in the next couple of weeks. I hope so as these headaches while especially wicked in the morning and at night sure act up during the day some days to (liike today) and are a complete bear to deal with. Not fun at all and so wish we could find a way to deal with them sooner than later. The reservoir would like be implanted in-line with the VP shunt and we could likely use it if we did do IT through the shunt but for now we would use it to drain off extra CSF as needed. I hope, I truly, really hope.

The only other bit of news is that I am going home w IV Zofran which I will self administer up to 4 times a day as needed through my Port which will stay accessed for now and be changed at ERT + if needed I can have it changed by my infusion nurse at her access team dept at CHW. This will help alot as the oral zofran no longer does much.

Stay tuned and pray Dr.Bragg is able to talk to Dr.Dickson + also that we can do this external CSF Port soon as I truly think it would make  a difference.


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