Monday, April 18, 2011

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.

Friday, April 15, 2011

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. 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!

Sunday, April 10, 2011

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.

Tuesday, April 5, 2011

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.