Update (too tired to edit, please excuse errors)

We are very lucky to have so many people who care about our Liz and support us by praying for and encouraging her. Many on facebook have asked all day how she is doing, so here is an update-

The last three and a half days have been pretty bad for Liz, and last night just capped off the pain, embarrassment, nausea and inability to control her own body.
We have known that Liz is impacted again since the 14th, when she showed obvious signs of it. Once home from our trip, I started her on some heavy duty help to try and relieve the impaction issue. That didn't help.
Earlier this week, she had horrible retching and stomach pain along with intense soiling. We thought a trip to the ER was going to happen because her anti-nausea medication wasn't working as well as it should. We got through that night and her issues have continued. On Tuesday, Liz did a clean-out routine of enema and Miralax, that should have made anyone rid their body of any trace of stool. For our Liz though, that has not been the case. For the sake of sparing you the gross details, and keep some sense of privacy for Liz, I will leave out much of what has been happening. I will say thought that my poor girl has been in a diaper for the last two days and she is uncomfortable and in pain.
We had a previously scheduled appointment today with GI and the following was discussed:
Even though Liz needs a diaper (gives you an idea of what her body is doing) and we finally started seeing a positive response to Tuesday's the clean-out late yesterday, she is not cleaned out. So, tomorrow she must do another awful clean out routine. So sad for her.
If the clean out does not work, then she will have to have a CT to determine if she has a blockage.
If the clean out is successful, then we go to the next step in the plan......
I should say, there has been a recommendation made for the next step, but I am not sure I can follow through with it- Dr. T wants Liz to start a new drug for motility issues. I am very hesitant to give her the medication because it isn't approved for someone as small as Liz, has side effects, and just makes me nervous overall. I have overlooked these same things other times when I agree to start a new medication, but I don't know how many times I can do that. Dr. T. says that this is a last resort option and if he didn't feel strongly that it should be tried, he wouldn't propose Liz take it.
Dr. T is going to call UCLA and speak to GI there and find out if they have any recommendations. I appreciate that he has no problem getting the opinion of others and only wants to have Liz well.

If I do allow the medication, we should see it start to work pretty quickly. If it doesn't help her motility or if she continues with nausea, pain and distention, then we are forced to become more aggressive, and get into the area of scans being the least invasive and exploratory surgery being talked about.
The g-tube is still an option for Liz, and we will continue to keep it on the table. Dr T said that he has no problem placing one in Liz, but that he wants us to have the choice of keeping up the quality of life she has right now (which, though a g-tube is no where close to the most invasive thing to have, it does change the way a person lives in some ways). Having said that, because dehydration has become an issue so often, a tube would be a great way to be able to hydrate her, in addition to giving her extra calories. We talked also about how TPN is no longer something we want to have done again. Too risky without having a known cut-off time, and a tube is something I would choose now over TPN.


Liz's motility has been a worsening issue over the past couple years. The GI team feels it is caused by 1. Nerve damage from having so many surgeries, and 2. Her colon being so dilated.
Obviously, a person cannot be so impacted- it is beyond painful and gets to a point of being scary. For Liz, her chronic CDifficile and immune suppression complicates the case because stool sitting around her gut is not good and only runs the risk of playing host to an infection.

So tired of this shit. Not classy to say, but it is true.
Thank you for continuing to care about our Lulu. If you are praying, please pray for Liz to have as easy a time over the next 36 hours as possible. Pray that this third clean out works, as she in big trouble if it doesn't.
Pray for me as I ponder, research, pray and weigh options about whether or not to agree to the drug.
And, pray for Liz's mind and heart- she is tired, embarrassed and just wants to be normal. Diapers at 11 years old is not normal : (

Trusting in Him.