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!

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!

Quick update

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

Can I say "again"?

Long story short, we didn't get transferred on Friday. We got discharged and went home. Sunday was about the worst day she had so far, so we went to the ER. This time we went to the hospital where our neurology team is. Emily is hooked up to an EEG right now, and then we will be getting a GI second opinion. They agree here that her quality of life has gone downhill to a point that is unacceptable.

Please pray that the doctor here have the wisdom to get to the bottom of these things soon! Today marks the sixth Monday in a row, in a hospital.

Still in ...

We are still in the hospital. Our Children's Hospital can not figure Emily out, so we are being transferred today to the hospital where our neurologist and neurosurgeon are. We will be consulting with them, and getting a second opinion from their GI team.

Emily has been in and out since March 13th, with only 5 or 6 nights home in that time. I am exhausted.

Her GI tract is a mess. She can hardly keep her g-tube meds down, usually even that gets retched up. She is TPN dependant. Extreme diarrea. Retching, gagging, drooling. All GI tests are normal. Upper GI, small bowel follow-through, endoscopy, CT scan, ultrasounds, xrays. Everything.is.normal. How frustrating!

So we are sitting around today waiting on transport to transfer us to the other hospital. It's an hour to two hours away depending on traffic. Of course, now it's rush hour time so the drive will be horrible. I'm hoping that it will after rush hour time, although being admitted late at night sucks. Then we're heading into the weekend ... I imagine we will do a lot of nothing between now and Monday.

Please pray that the second hospital is able to get to the bottom of Emily's problems! My little girl needs a break, and we all need to get HOME!

In again ....

(I need to state first for the record, that the picture above is a bit deceiving. Emily looks like she has a little paunch belly, doesn't she! She is really skin and bones, this was bloating. I wish her tummy was round like that!)

Emily had her VNS surgery on Wednesday, everything went great with that! She was in recovery for about an hour and a half, and we were discharged. Then Thursday morning she woke up retching and gagging. Her home nurse gave zofran through the g-tube, she retched it up immediately. She redosed it, and it managed to stay down. So 20 minutes later her nurse gave all her morning meds, and she retched them up. In between all this she had three explosive diapers, so things weren't good. We immediately packed up and headed to the ER. Good thing I had her nurse with me to sit in the row with Emily, so she could suction her as needed while I drove.

We are back in the hospital, still with her gut shutdown completely, still with no answers. We did xrays, ultrasounds, more xrays, and more ultrasounds. They found a lesion/cyst/something on her gallbladder. We are waiting until tomorrow (Monday) and then going to do an MRI. The doctors have to contact her neurosurgeon first to get the proper information on how to do the MRI now that she has a VNS implanted. Once we get the MRI results we'll know more. They warn me that this may have nothing to do with what is going on .. that she could have a congenital cyst that's been there forever ... or it could be "the answer". Who knows. Depending on what it shows and how she does, the GI might redo the Upper GI, this time doing a small bowel follow-through as well.

I am exhausted. We have been in and out and in and out of hospitals non-stop lately. I am so sick, bad head cold with sinus headaches. The stress, poor eating, and bad sleep aren't helping the situation.

Please pray that they get to the bottom of these problems soon. My little girl is being SO good in the hospital, but how much can we all take? When she's not nauseas or in pain, she is her normal smiling self. She has all the nurses wrapped around her little finger. They literally argue over who gets her case each day. I am so glad that people love my girl!!! I just hope we are done with this soon.

In and out, in and out

That's how we have been lately. In the hospital, out of the hospital. In the hospital, out of the hospital. Three weeks ago it was two trips in a row for seizures. Then on the 24th it was in for feeding intolerance, retching, pain. That stay lasted 12 days and we were finally discharged, but TPN dependant. Her g-tube was switched to a gj-tube, and she doesn't tolerate j-feeds any better than she does g-tube feeds. An endoscopy showed significant irritation in the esophagus, but nothing serious. An Upper GI showed that her fundo is intact, although a little loose. She had a PICC line placed (twice, since she pulled the first one out). We came home Friday on TPN 24/7. By Monday morning she was retching, gagging, crying again. Luckily we had a pediatrician's appointment already scheduled, and she sent us straight to the ER. They ran labs, bolused extra fluids in, and diagnosed a UTI. The GI said we should go home with zofran and antibiotics, and we were on our way. This morning she retched just as badly. I called the GI first thing this morning, because he told the ER he would see us today. Now it's 11:30 and they still haven't called back to tell me when we'll be seen today.

She is going in tomorrow at the other hospital for her VNS placement. I have explained all that is going on, and everyone is okay with her proceeding with the surgery.

Please pray she does well with the VNS placement, and that we really get to go home after like they say we should. Please also pray that someone can get to the bottom of her GI problems. Her gut is shut down for whatever reason. It's a mess.