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!

17 comments:

Rebecca said...

Oh, I can't imagine what you and your beautiful girl are going through right now, and I am so very, very sorry that you still don't have answers or relief. I'm thinking about you all...

(((hugs)))

Reagan Leigh said...

Has she had a muscle biopsy to look for mito?? The skin biopsy is not an accurrate test for mito. In many people (including Reagan), the skin biopsy comes back totally normal, but they still have mito! I would say that if they are going to put her under anyway, you need to push for the muscle biopsy (and make sure they order both pathology AND enzyme testing on the sample)!!! Please feel free to call me anytime!!! I will keep Emily in my prayers!!

Rileys Smile said...

Praying for Emily to find some relief very soon... and you as well.

erika said...

It sounds absolutely torturous. You must be at your wit's end. I'm praying hard for Emily, you, your family and your doctors. Wishing you lots of strength and peace.

Becky said...

My heart hurts for you! You are in my prayers. I wish you could see our world renowned neurologist...he specializes in metabolic disorders and has diagnosed and helped kids like Em. Hang in there.

Alison said...

Thank you for taking the time to update us. I am so sad to hear your little peanut is still so sick.

Awhile ago I saw something on Mystery Diagnosis about someone who had sudden onset of vomiting and nausea that lasted for weeks and weeks - pretty sure it had something to do with their gall bladder - so you could be onto something there.

You are in my thoughts and prayers.

Selene said...

Thinking of you and hoping you all get some answers and relief soon.

Cammie Heflin said...

PRAYING PRAYING PRAYING!! I cannot imagine what you are going through. So frustrating on the sidelines so I can only attempt to relate to what you are feeling. I work with a student that has no diagnosis and it's very heartbreaking. I truly hope they can find the missing link!

Cathy said...

OMG..I am so sorry. Praying for someone to figure out what is happen to your little girl. do they think the mulitiple sedatives are doing this? Annabel doesn't tolerate much without it changing her sweet personality. It is so hard to watch them in pain. Also, doesn't hospice mean that no more interventions? It was hard when Annabel was on it because I basically couldn't seek treatment or remidies for her mutlitple UTI's. IT is so hard to know the right direction. Praying for your family.

Colleen said...

Praying big time for answers! Hang in there Mama! This must be incredibly hard on Mothers Day.

Michelle and Sean said...

I'm sad you will be in there for mothers day too! I will continue to pray! I'm so sorry that things are taking so long to get figured out. Its so frustrating!

Elizabeth said...

Oh, dear. I am so sorry -- I don't know what to say, can't imagine how much you've gone through and continue to endure. I will pray for strength for you and relief for Emily. I will pray for joy and peace for your son --

Buttercup said...

You are all in my prayers, especially sweet Emily!

LauraLew said...

Oh my god. Thinking of you and praying you get some relief SOON.
Laura

The VW's said...

I hate that you guys are having to go through all of this!!! Thinking of you often, and praying too! Love and Big Hugs!!!

Lucia said...

Oh, poor child! I am sorry that Emily is suffering so much. She doesn't deserve to suffer! Y'all are in my prayers, especially Emily! I hope she gets relief ASAP! It's horrible to see someone be in so much pain! It must be tortuous for y'all, especially for little Emily! I've come to love Emily. She is such a sweet and cute little girl with a great personality. My heart aches for her. I will keep y'all in my prayers. I hope the docs find an answer ASAP and helps her! I am so sorry that you had to spend Mother's Day in the hospital with Emily. Y'all don't deserve this much pain and grief. *hugs* Give Emily a hug from me if she can tolerate it. Emily is in my thoughts always.

Team Carter Jay said...

Please update us when you can...a little worried about your Peanut <3 <3