Just a quick note to let everyone know that Lily was discharged from the hospital last night. Much more comfortable than when she was admitted!

We have a few things to work on to get her back on track but we will spare you the details.

Merry Christmas everyone!

So it turns out that Lily is really constipated, and I am warning you now that this post contains potty talk, so if you are uncomfortable with the subject I recommend the following book: Everyone Poops

Lily’s condition requires us to track everything going in and out of her. In a hospital setting this is an important metric where “things” are weighed to make sure the proper amount is coming out. (Compared to what is going in.).

At home we are a little more relaxed on the matter, but we still keep track of how much, how often, and the “quality”. Unfortunately, “how much” is a subjective term, and not everyone agrees on what constitutes a “small”, “medium” or “large”. So sometimes we get into a situation where Lily get a little backed up.

It’s not her fault, between the medicines, the formula and lack of a properly sized toilet chair ( This could be a separate blog post where I rail against the insurance companies) she cannot evacuate her bowels completely.

Tell help keep things running smoothly we rely on a couple of daily medicines. Miralax and Senna syrup – this line up is new since her spinal fusion surgery. Before her surgery we used only Miralax, but we where concerned it was too harsh on her system, so we cut back on that dose and added the more natural Senna.

That seemed to work fine until we ran out of senna syrup, and our local pharmacy couldn’t order a replacement. To be fair they got a new bottle in right away it was just the wrong dose/ brand (3 times!) so we went without half of her BM meds for a couple of weeks while getting that straightened out.

As I mentioned above, we track this stuff, so it seemed like things were moving right along with no issues while we waited to get the senna syrup sorted out. We got finally got the proper senna syrup from the pharmacy and added it back this week. Problem solved right?

Turns out we were further behind than we thought. Lily didn’t have a good night Thursday and she was really uncomfortable Friday night. So who do you call for backup when your backed up? The suppository! One bisacodyl suppository and an episode of Bob’s Burgers later and all was better. (She slept for a few hours anyway.)

This is the first step we take when we get behind, and usually it’s enough to get us back on track, but she still seemed “off” on Saturday so when Sunday morning (Dec. 22nd) rolled around and she still wasn’t feeling well we started brainstorming. Because of an “unusual” seizure event she had Thursday we started thinking about issues not poop-related. Melissa made a call to Lily’s doctor down at KKI. After a quick phone consult with the on-call doctor it was determined that Lily should be seen by a doctor that day.

And that is why I am writing a blog post from Penn State Hershey Children’s Hospital.
We spent most of the day in the ER where after some X-rays and blood work it was determined that Lily was literally full of poop. They attacked the problem from below with two enemas and then we were admitted so they could attack the problem from above with a disgusting liquid whimsically called “GoLYTELY”
How do I know it’s disgusting? I tried it. But it’s doing the job for Lily, so once that jug is complete hopefully we can be discharged. More blog posts as warranted. Signing off for now from the third floor of the Children’s Hospital in Hershey.