How long do you think it will take to “clean out” Lucy’s bowels? That’s an excellent question. According to some very knowledgeable mothers I chat with in regards to mito and motility disorders, the consensus seems to be 3 to 5 days! Lucy has been running a solution of Golytely for over 24 hours via her g-tube, this is what is used to cleanse people prior to surgery or having a colonoscopy. In “most” people Golytely works in a matter of hours or overnight… well, as you know Lucy is not “most” people. She is Lucy!
Our day started early, as Lucy did not sleep well at all last night. Lucy has some anxiety issues, who can blame her, and when she is nervous she picks at things. The crib in our room is covered in stickers stuck on from various children over the years, and well our little one thought that she should do something about that, and started picking at all of the stickers stuck to the crib. She took her nervous habit one step further and started singing “DDDDDD-RA” all the while picking at a Dora sticker that was literally stuck underneath a dozen or so other stickers. Seriously, I was contemplating asking for some alcohol prep pads at 2am so that I could try and take the stickers off myself just so that she would lay down and go to sleep. Sleep finally happened, but not long enough, we were up for the day at 6:30am.
Dr R came in at 7:00am and discussed holding off on placing the j-tube until after we see the motility specialist next week Tuesday. He wants to make sure that placing a j-tube is really going to help make a difference and is interested in hearing what Dr B has to say about Lucy’s issues. We also discussed using an injectable med on Lucy to help her empty her bowels. For the life of me I can not remember the name of the med, but he did say they use it mainly in patients who are heavy narcotics users and have no ability to move their bowels. Our main goal is to get Lucy cleaned out and feeling better, so far we have yet to accomplish that. She looks puffy and bloated, thanks in part to the IV D10, and also to her dysmotility.
We spent our day walking around the hospital, knocking several tests and procedures off our medical to do list, and setting off alarms bells when we tried to go to the coffee shop located quite inconveniently near the outpatient exit. Lucy’s ID band is equipped with a security band, and lets just say her band is pretty sensitive. We were originally scheduled to see Lucy’s cardiologist today, instead all of her cardiology testing was ordered as in-patient testing. We heard back this evening from her cardiologist that everything looked great with Lucy’s heart, we can follow up again with them in a year. We also walked downstairs to outpatient therapy where we saw some dear friends of ours who are living in it like we are, Lucy’s aquatic therapist, and her augmentative communication specialist all at the same time. Now how many of you can say you have these types of people in your lives, much less see them all in one room coincidentally. Tomorrow morning we have set up a consult with her augmentative specialist in hopes of starting the process of getting Lucy her own Vantage Lite.
We had some wonderful visitors today which just made our day! Drew went home this afternoon and picked up the kids and brought them here to have dinner with us. They really love to see where Lucy stays when she is in the hospital, it allows them to “see” what things are like for Lucy and I when we are here. Jill, our friend and kiddos music teacher came by this afternoon and spent some time keeping us company and played with Lucy which helped to keep her mind off of her discomfort for a while. Helen, one of Lucy’s nurses surprised us this evening by visiting. All of the kids loved seeing her including Drew and I!
Please pray for poop…what can I say it’s our reality, my entire life revolves around it. Tonight when I was talking with my sister we were discussing the twins poopy diapers over the phone and I just had to laugh at the irony of our conversation. All mama’s are obsessed with their baby’s BM’s, but when they go as far as Lucy’s have gone it becomes a very scary reality.
Thanks for all of your thoughts, prayers, and well wishes we appreciate them very much!