Wednesday, May 25, 2011

Blogger is being a Bother!

I have typed up an update three times, and all three times it has been eaten by Blogger. I will try again later.

Equally annoying, if not MORE annoying, is that Blogger won't let me comment on anyone else's blog. It has me log in to the google account, then enter the "word scramble thing". Then when I hit submit it has me log in again. Then unscramble. Then log in. Then unscramble. Rinse and repeat.

So, I have read up on lots of our friends this morning. I have many things to say, but evidently Blogger doesn't want you to know.

I will try and find time later!

Friday, May 6, 2011

What's going on

Emily is still in the hospital. She had a broviac placed yesterday, since she pulled her PICC line out for the second time. She is getting TPN 24 hours a day through the line. She is still not tolerating anything in her stomach, except for tiny amounts. She can handle a 5 ml dose of medication, but usually the ones that are 10 ml get retched up still. Her Upper GI (three of them), endoscopy, ultrasounds, xrays, 2 CT scans, are mostly normal. The only thing that the GI can find that is abnormal is that her gallbladder has some sludge in it, and her bile ducts are dialated. The HIDA scan on her gallbladder showed it functioning okay, although it is over-reactive and hyper-something. The GI wants her gallbladder out because it's the only thing we can find that COULD be causing her symptoms. Surgery says the tests are not strong enough to convince them it should come out. Emily's regular surgeon is in Belize until Monday, so we are in a holding pattern until he comes back. Our regular GI is on the hospital round starting Saturday, so it will be good to have people who really know us. Our GI is going to try and convince surgery to remove her gallbladder, since after 8 weeks we have to do SOMETHING to try and give her some relief.

Emily has moved from the non-stop retching and throwing up into screaming in pain/agitation all day and night. She is getting many sedatives, pain meds, etc every 4 hours and still screams. Her heart rate shoots up and she is just a mess.

We have been in the hospital since March 13th, with only a few days home here and there. PLEASE pray that they can figure out soon what is going on! I just asked about ovary or uterine cysts, they are going to review her previous tests and see if they could see something there. We are really grasping here, but something is causing her pain and no one knows what.

The other thought they have is that this is simply a "progression of her underlying disease" which no one can diagnose. Remember that overall, Emily has no diagnosis. They are repeating a lumbar puncture today, she had one in 2005. They are testing for neurotransmitter disorders. She is being tested via blood for palmitoyl—protein thioesterase deficiency. If she goes into surgery, they will be repeating her skin biopsy, which was also done back in 2005. They have repeated her chromosome micro-array, and it was normal.

If no one can figure out what is wrong and they cannot find a source for her pain, they say that it is a neurological issue and nothing can be done for it. They will then continue having the pain team work with us and transition us to hospice.

PLEASE pray for guidance for our doctors!! We are to our limit. I am so sad that we will be in the hospital for Mother's Day. My 10 year old Jacob needs his family all together!

Sunday, May 1, 2011

Quick update

We are still in the hospital. I will try and get on here tomorrow to post an update.