…I know!! I have been trying to carve out the time to put down in writing all that has been going on around here, I just don’t seem to have the time or the energy to put into words all that we are feeling or experiencing. We have a lot going on in our everyday life in addition to Lucy’s medical life. I am so far behind in updating you on the everyday stuff, that I am not sure where to even start this post…I think I will attempt to put in writing some of the medical stuff occupying my mind.
I did it again, I jinxed myself by putting down in writing that we were hoping to take the month of August off from any medical appointments, you think I would learn. I wrote back in July that Lucy was finally, for the first time in her life, stooling daily sometimes twice daily. We thought that we had at last found the proper med dosing and things were finally working the way
nature Miralax and enemas should work. Little did we know…
Lucy started acting “off” for lack of a better description early to mid August. She was stooling more frequently, but very small amounts, not what you would expect to see in a kiddo who was using so many meds just to have a bowel movement. Lucy can only have a bowel movement after she has slept for a period of time, because she simply does not have the muscle strength or the energy to stool any other time. Due to the increase in her Miralax dosing she was waking in the middle of the night and during the middle of nap time with dirty diapers. This has caused a big disturbance in her sleep and in turn mine as well. If we try to cut back on the Miralax even slightly then we revert back to no stool for days. Ugh…what’s a mama to do? After several weeks of this, my mothering gut telling me something was not quite right, and our nurses encouraging me to take her to see her GI doc (our second least favorite specialist, metabolism being our least) to check things out and at the very least get a scan of her belly to see if there was any noticeable blockage that could be causing her issues. We feared that perhaps she could still have had some barium left in here system from the barium enema that she had done in early July. After scanning her belly we learned that she did not have any barium in her belly, but that she had many pockets of stool sitting in her intestines despite increasing her med dosing. This is directly related to her poor motility, Lucy’s GI system, in particular her lower intestinal motility appears to be declining. She is dealing with chronic intestinal pseudo obstructions (CIPO), this is something that she has most likely been suffering with all of her life but is a bigger issue now for some reason or another.
After discussing the issue ad nauseum, we came to the discussion about “quality of life”. We can’t “fix” Lucy, Lucy has a progressive degenerative disease that has no cure. We know this, but that is not a reason to not try and treat her symptoms as best as we possibly can. I’m not saying that GI is suggesting we do nothing, they have made several suggestions. Unfortunately, with every suggestion, we have new issues that could potentially arise, we just don’t know what will work best for Lucy. What we did determine is that Lucy needs to be seen by the top motility specialist at CHOP, and soon.
So begins the barrage of appointments this month. We are scheduled to see GI nutrition, neurology, cardiology, Dr R, metabolism, and the GI motility specialist at CHOP…not all in the same day mind you. We are once again putting all of our preverbal eggs in one basket and hoping and praying that Dr B will have some valuable input and advice regarding Lucy’s motility.
I have so much more I want to share but for now sleep is calling me…
Your thoughts and prayers are once again needed and greatly appreciated.