New week new challenges? I'm tired!

Well, here we are starting another week. I didn't post all last week because I felt like I would just be repeating myself. Things are pretty much the same as far as Lily goes. We have to make our way down to the clinic tomorrow to see Urology and Endocrynology. I hope I can find everything ok. Sometimes I feel like I'm lost in a Where's Waldo picture or something down there even though we spent three months there practically living there. Liliana sees the Urologist to make sure that her kidneys are ok since she spent so much time in the hospital on a folley catheter and also had a UTI while in there. She has to see Endocrynology for her thyroid. Her thyroid was checked while she was in the hospital but since Ds kids can have issues with their thyroid and she was having feeding issues they put her on synthroid. Hoping that maybe she will be able to get off of that stuff because it is such a pain in the rear to put through the tube. I have to crush it up and add some water to it then push it through the tube. I'm sure someone out there can relate?! I tell you the whole med thing through the NG tube is wearing me down. We had more problems with her NG tube this past week then we have ever had with it. Friday I almost had to miss my own doctor's appointment because Lily's NG tube was clogged. The stupid thing hadn't even been in for a whole week! The G-tube is starting to look so much better, let me tell you. Anyways, I had to call Bill and have him come home from work so we could just replace her NG because every time I would start up the pump after flushing her tube and repriming the pump tube and basically trying every trick in the book the pump would eventually stop and give me the error, "NO FLOW OUT!" Do you know how frustrating that is when you are just trying to feed your hungry child? It happened to us again Friday night 3 times after we got her continuous night time feed going the pump alarmed and we had to go in her room and flush the line again to get things rolling. So frustrating! I just wanted to go to sleep! After a lot of thought and coming close to throwing the pump out the window we figured out that Lily's tube mainly gets clogged after we give her her morning and evening doses of her antibiotic Bactrim. Anyone that knows what the consistency of bactrim is knows that it is thick like Children's motrin or tylenol. It's also very sticky! So I suspect that the bactrim is the culprit here. How in the world does anyone expect you to push this junk through a tiny NG tube. 5" french to be exact! Well, we have one little trick we use which is adding water to it, only like a few cc's to help dilute it enough to get it going into the tube. This still isn't a permanent fix, hoping urology takes her off that stuff! Oh! another NG blunder this weekend happened on Saturday morning when Bill calls me about 8:30Am to tell me that he can't get anything to go in and if he can't I would need to come home and help him replace the tube. Funny thing was I was at a Kiddie Closet sale and did not know my phone rang when I realized it did I was in route to go to the hair salon to get my hair cut and colored. I told him it was a good thing it happened when it did because there would have been no way I could of left the shop once she started coloring my hair. Lucky for him with some warm water, a toothpick, and a little perseverence he was able to get the job done so I didn't have to go home. So as you can see this was the most irritating part of our weekend, good thing it was balanced out by Bill getting more work done on our dining room and we were able to get out and go to my niece's second birthday party! Whew! That's why I am so tired! I'm sure I will have many more NG tales to tell in the future. Well, I better turn in for the night. Night, Night!