Eve had a better night last night and rested comfortably.  Jim and I took turns getting up to turn on and off the pump. 

The GI called late this afternoon.  The x ray did not show any constipation.  So that means she is not tolerating her food.  He said it's time for a gj tube.  So his staff will work on scheduling that and it will have to be done at Baystate. 

I hate being right sometimes. 

more x rays

I talked with the GI doc this afternoon.  He sent us to the hospital for more x rays.  I didn't realize this, but just because Eve is having diarrhea doesn't mean she isn't still impacted.  She can be still corked up (and not entirely cleaned out...things can sneak by the cork) and that can make her not tolerate her food.  So, he'll get the x ray in the morning.  In the meantime, we need to run her pump for three hours on and one hour off overnight tonight to give her system periods of rest.  So, I'll run it from 6:30-9:30pm and shut it off from 9:30-10:30.  Then turn it on until 1:30, etc. 

As for her not tolerating her food, he wants to see if it's 'a' problem and not 'the' problem.  In otherwords, is there constipation causing her to retch, or is her system shutting down and not tolerating food (which is my fear). 

I'm really struggling with this.  The worry is a constant weight. 

Here's hoping we have a good night tonight. 

So much for doing well.
I wrote too soon.
Last night Eve was up at about 3:30 gagging and retching.  I stopped her feeding pump (she had gotten about 2/3 of the bag).  We changed her diaper and comforted her.  I pulled out the contents of her stomach and she had about 1.5 ounces of formula in there.  I left it out.  We tried to go back to bed, but then she was heaving with her whole body convulsing.  Nothing but a lot of saliva came up (I had emptied her stomach).  She wasn't able to lay down after that because she would retch every time.  So, we put her in her wheelchair and brought her into the living room.  Jim slept on the couch next to her and she dosed a bit.  She did much better sitting up.  She's still a little gaggy, but doing much better.  I"m going to send a can of formula in to school with strict instructions to go very slow.  I'll also put in a call to the GI.  I'm wondering about an anti-nausea medicine and when is it time to look into a gj tube. 
I also need to call the mito doc and update him on Eve's regression. 

Fortunately, the pediatric palliative care nurse is coming over this afternoon. 

Eve has done pretty well on the feeding pump.  We got her system cleared out with laxatives and now she is on a maintenance dose.  I still need to fiddle with it because her poops are not solid yet.  I've been working up to the recommended amount of formula in her tube.  Right now she gets most of it overnight (we run the pump from 6pm to 7am) and this weekend she got another can of formula through the pump from 11am-1pm.  I need to figure out a solution for school.  I"m planning on having Eve be on nearly continuous feeds, but we have to get her pump to school.  Right now it's on a big honking IV pole.  They make little backpacks for pumps, but I have to look into that.  I'm not sure if I can use a regular backpack or if it has to be made to fit the pump (to position things a certain way).  I'll figure something out so Eve can just bring her pump to school with her.  Then we can have a few hours off in the afternoon to let her system rest before starting it all over again. 

She's doing pretty well.  The gagging stopped.  She's on Valium every 4 hours while she's awake and that is really making a difference with her leg cramping up.  She's my little trooper and I love her. 

after a trip to the ER, Eve is better

Eve had a quiet night last night.  When she woke up, I gave her about 20ml of pedialyte and she started gagging.  So, I took her to the doctor in the morning.  Her temp was down and her extremities were quite cold and mottled.  The doctor listened to her stomach and gut and said that her intestines were remarkably quiet.  So, she sent Eve to the hospital for bloodwork and xrays of the chest and abdomen.  Bloodwork came back just fine.  No sign of infection, and all other things looked normal.  The xray didn't show any blockage, but did show that her intestines were full of poop.  Top to bottom.  (How many people get to say their kid is full of shit?) The Dr. felt that this may explain her intolerance to the feedings (by making her feel very full).  So, she called in a script for a glycerin suppository and sent us to the ER for IV fluids. 

We were at the ER for  5 hours.  Ug.  But Eve was a total angel.  She was so quiet and good.  She just chilled out in her wheelchair and even dozed a little.  The put in the IV and took a urine sample to test for a UTI (which she doesn't have).  That process was difficult.  It took 4 attempts to get the catheter in.  Eve was a trooper.  Finally, they gave her 20ml of water through her g-tube to see if she would throw it up. She didn't, so we were allowed to go home. 

I  gave her about an ounce of formula after dinner and it seemed to go down just fine.  But I stopped there.  Tomorrow morning, I'll give her formula very very slowly.  I'll send her to school with just one can of formula (rather than two) and tell them to give it to her very very slowly in the middle of the day.  If she starts to retch or gag, then the feeding is over.  We'll see how it goes.  I'm also calling the GI first thing in the morning to ask for a pump.  If she has a feeding pump, we can give her all of her fluids slowly during the 12 hours she's in bed.  I think it will be much better to have a slow continuous feed rather than dumping large amounts into her stomach 5 times a day. 

So, it was a rough day, but I think things are looking up.  Oh, and the suppository was successful when we got home and she got a bit of poop out.  However, I know there's a ton more in there!  I'm concerned that her intestines aren't working as well as they should, but I think we can manage that with meds if it becomes a problem. 
We're hanging in there.

Eve is sick

On Friday, Eve was sent home from school because she threw up most of her feed and had a low grade fever (more on that later).  For the rest of the day, I slowly gave her a few more ounces of formula and she did fine.  Saturday, I got in four feeds and did them slowly, but she was fine.  Today, I got in her morning feed and that was it.  When I tried to give her the next feed, she immediately started gagging.  I tried to push through just a very little bit at a time, but I stopped after about an ounce.  I called the on call nurse through the pediatric palliative care program and she said to try to give 2 oz of formula very slowly and see if she keeps it down.  We put Eve down for a nap first.  I woke her at 3pm and we tried to give her the little bit of formula slowly, but she started retching and we only got an ounce in.  I called the nurse again and she came over.  She checked Eve's vitals and listened to her stomach and bowels.  Eve continued retching all afternoon even though she wasn't being given anything.  She never actually vomited, but that's probably because there was nothing left in her stomach (the nurse checked by pulling out the stomach contents through the tube). 

So, when Seamus went to bed, we gave Eve about 10ml of pedialyte with her Valium.  After about 25 minute, we put her to bed.  She so far has kept it down (it's only 2 tsp) and has been pretty quiet in her bed.  The nurse called the on-call pediatrician who said that if Eve started vomiting bile or just vomiting a few times, or if she has stomach pains that we need to take her to the ER.  If we weren't able to get in a decent amount of pedialyte (we weren't) we need to call the office first thing in the morning and have her seen by a doctor.  So, that's what we are going to do.  I'm cautiously optimistic that tonight will go somewhat smoothly, but I have some things together in case I need to make an ER trip. 
I'm worried and scared.  I don't know if this is a virus or further decline in functioning.  I need to focus on the problem at hand and stop letting my mind jump to future problems. 

Seamus is walking!!