Just a Little Update

We had an Upper GI and a Small Bowel Study done today to make sure there's no blockage. He's been having dozens of poops per day but his belly, over the weekend, kept getting bigger and bigger and he was screaming in pain and his o2 sats were everywhere so I took him to the ER where they did an x-ray which showed, of all things, that he was constipated from top to bottom. So, we added Miralax to his cocktail of daily medications - this is something we dealt with with Avery, so we're not new to constipation with diarrhea issues, it just sucks, though.

Yesterday we had a Neuro appt. where I got chewed up one side and down the other for taking him to the ER because of the germs - which I know but he had been screaming in pain for 4 hours and urgent care wasn't open yet (and really, is there any less germs at pediatric urgent care?)...anyway, won't do that again. Then, there was a mix-up with the ACTH dosages. Neuro had changed the doses 2 times and we were going by the wrong dosing information AND in addition to that, the nurses at the hospital did the math wrong and had us giving 0.35 on the syringe rather than 0.3 so we've gone through it quicker than we should've so he chewed me out because of the cost of the medication (how was I supposed to know the nurses did the math wrong?)...

Anyway, so yesterday I contacted the peds office and requested something either stronger or different for Liam's reflux which has grossly worsened since having the NG tube put down. Well, with all the constipation/diarrhea issues and the increased reflux, they decided to do an UGI and Small Bowel Study just to make sure there were no blockages causing it. So, everything looks good! Which is great.

Now we're looking at a G-Tube in the next week or two. The neurologist and pediatrician seem to think it's time to move forward with that. The Neurologist isn't concerned about weight gain (ACTH has helped with that) but with calories for energy because he is too floppy. Neuro says he shouldn't be THIS floppy, even with ACTH....so...that's where we're at.

Milk and cookies to you if you followed my word vomit, there. I just had to get it out!