Monday, August 29, 2011

An easy link

We are still inpatient, things have gotten much worse :(

Emily was weaned off the pain pump, only to have unexplainable pain episodes all day. We have run every scan and test imaginable, and no one can find anything. She screams and writhes around and bites herself (or me). She tears out her hair, bangs her head, and screeches. It is horrible. It comes on suddenly - she will be fine for a minute or two, and then go abruptly into this. It can last anywhere from a few minutes to a full hour. There's no more than 30 minutes break in between episodes.

She is back on the pain pump, at more than twice the dose she was on before, and still having these episodes. She is also on ativan and seroquel around the clock, with no relief.

The doctors all agree that this must be a progression of her underlying mitochondrial disorder, which is not specifically diagnosed. They were blunt today, they said that they do not feel they will be able to find a reason for her pain. Their goal is to get her comfortable enough to go home.

Please pray for Emily. Pray for us. Pray for her 11 year old brother, who doesn't understand why the doctors aren't fixing his baby sister. Pray for the doctors to find a way to make her comfortable. Pray for a miracle!

And I hate to add this in to this post, but we are getting very behind financially because of being inpatient over 90 days this year. The drive to the hospital is 50 miles each way, and my husband and I try and switch off every couple days for sanity breaks. The cost of gas and the cost of eating every meal in the cafeteria are adding up. Alex's car costs $11 a day to park at the hospital, luckily mine only costs $4 with the handicap placard. It all adds up, and Alex is taking days off every week. Someone has to be home with Jacob, and someone has to be with Emily. It's getting pretty desperate. If you are in a position to help, please donate to our ChipIn fund. It will go directly to us. I hate to even ask or put this here, but we really need help!

Saturday, August 13, 2011

Adding to the previous post., since it won't let me edit it!

blogger sucks.

(ETA) I realized that I posted this update from FB here, and didn't post before this. So we were told her stomach ultrasound showed possible kidney stones. Then we did an xray to confirm and it was shown that she has a possible obstruction or ileus in her intestines. So we did a CT scan, that showed a large abcess next to her bowel, with contrast in it, most likely caused by a small bowel perforation. So she was sent to ct scan guided surgery to drain the abcess and put a drain it. They called after 2 hours and said there is no abcess, the CT is showing a large loop of bowel. So no surgery, no answers, no relief. The GI says the radiologist that saw an abcess needs to talk to the radiologist that saw a loop of bowel and determine what the hell they are seeing.

Update from the hospital

Just heard from Alex. Emily's broviac line is growing yeast. :( She is starting on antifungals for it, and the line will be pulled Monday in the OR. A new broviac won't be placed until they are sure the infection is cleared. GI is upset about the CT scan issue. He is insisting that the two radiologists sit down Monday and discuss WHAT they are seeing, since they are not agreeing on what it is. Obviously SOMETHING is wrong with her bowels or something near her bowels, so what the hell is it. They will be doing more imaging this weekend or Monday to determine for sure. Her fever is back up to 103. Her PCA (pain pump) ran out of medication and for some reason it's taking pharmacy forever to send more up. She is shaking, crying, jerking, miserable. I am so glad that Alex is there and I get a break, but it breaks my heart to not be there. :( Her bladder is huge on the scans, so they want more frequent catheterization. I just told Alex to ask the nurse if we can just place a catheter in and LEAVE it. Let it just drain. Her stomach hurts so much, to catheterize her Mitrofanoff makes her scream, I can't imagine doing it even more often.

I don't know what causes a yeast infection in a line. I am wondering if drooling can cause it? She drools SO much, and the dressing on the broviac has come undone three times this week from it. In fact when we came up to the floor from the ER on Wednesday, the Broviac was uncovered and she was drooling on it. I tell them as soon as I notice it coming undone but it's hard to watch it 24/7. :(

Please pray for Emily, think good thoughts, whatever it is you do. She has never been this sick in her life and it is horrible. They keep saying that she is "on PICU watch", so they are very concerned about what she will do next.

Today, I am home with Jacob. He needs some love and attention and "normal'. We are going to lunch and the Smurfs movie. I will update when I hear from Alex later!

Thursday, August 11, 2011

Quick update, need prayers!

For anyone who doesn't follow us on Facebook, Emily is back in the hospital. She has either an ileus or a partial obstruction. Her pain is out of control and she is really, really sick. She finally got a pain pump of Nubain, on top of all the other lines/meds getting pumped into her. She is knocked out. I am going to try and sleep, although I am so heartbroken and sick to my stomach I don't know if I can. Please pray the the intestines either wake up or unblock soon, so she doesn't need surgery ... Or worse.

I am really scared. I don't think she has ever been this bad. :(

Friday, August 5, 2011


Emily seems to have this horrible cycle of days that we can't get over. Just when she has a few good days in a row ... they come to a halt. Tuesday Emily had three long seizures, after not seeing anything major in almost two weeks. Then she went to sleep that night, and woke up seizing. She was struggling to breath and wouldn't come out of it. I didn't feel comfortable giving diastat when her breathing was so weird, so I packed her up and headed to the ER. By the time they triaged her, her sats were back up to 92 and she was a bit more responsive. They put us in a room quickly, and her sats were at 98 and she was fine. The ER doc asked what I wanted him to do, and I said send us home. Whatever it was, it was over and she was fine.

The next day we had TPN clinic, with our GI. The gj-tube we are trying to get for her wasn't in yet, so we still couldn't schedule the placement and endoscopy. Hopefully it will be in soon. The hope is that she can get medications through the j-tube and the g-tube can drain constantly. Right now I have to clamp her g-tube for an hour after meds, and it drains 24 hours otherwise. The problem is that even after an hour, most of her meds drain out of her stomach. They just aren't digesting. So she isn't getting most meds, and she is still gagging and retching when I give the meds. She throws them up half the time. Because we had been in the ER the day before with seizures, the neuro squeezed us in that same day because we were already in the clinic. He doubled the strength of her VNS cycles, and changed it from every 3 minutes to every 1.8 minutes.

Like I said, it's a cycle. The day we had TPN clinic, I told the GI that she was doing decent. Retching every morning, but not all day. Laughing more, playing with toys, more like herself. This morning she woke up retching and it never stopped. She threw up her morning meds. She threw up her next meds. I didn't even bother trying to give her any more meds.

She is asleep now, but keeps waking up retching. Luckily she only wakes partially up, and is going back to sleep. But it means I am nervous to go to bed, because what if she throws up in her sleep and doesn't wake up.

I hate these cycles. I wish Dr. Gregory House was real - I would take Emily to him in a heartbeat!