Very Long Day

Yesterday was a very long for us that started out as a normal day. We woke all the kids up for school like normal each day, had them shower and dress. This is when things became interesting. 

I prepped a new bag for Ellie's feeding pump, hooked her up and the pump alarmed right away. With pump alarming a flow out error, I checked to make sure there were no kinks, hit run. Same error right away. This time I removed all the tubing from the pump reset and and tried again. Same error (sigh)... This time all the tubing was removed, her extension removed, everything primed again, new extension, same error. (UGH)... This is when the frustration set in and I told the boys they would be catching the bus and their sister not.

At this I started trying to push water through the J-tube with the extension and this just resulted in water spraying in the front room and a giggly child. After several attempts I then moved to the slip tip syringe right in the button. Using pressure only sprayed the water made Ellie giggle, plunging made her giggle as the syringe popped out. By this point offices were starting to open. I called the GI office and left a message however, with no real voice it was hard for the doctor to understand. I called the peds office and they told us to just take her to ER as they can't do anything more than we had already done. 

Unfortunately due to budget cuts we could not take her to our local urgent care clinic for a KUB to check for a kink in the tubing we had to take her to the ER. Well for Ellie this meant taking her to Baltimore, to John Hopkins Children's ER, where her specialty doctors are.

After a very long day I was to exhausted to post anything last night after our ER trip with Chantelle. Turns out her j-tube is clogged and totally unusable and the soonest her G-Jet can be changed is "possibly" Monday or most likely on Tuesday. We let the ER know everything we tried, and they also tried each of those methods with the exception to the KUB and the clot buster. They also tried these and nothing worked.

While she does have her g-tube she does not typically digest her formula properly or at a high enough rate to allow for weight gain and growth. Because of her functioning g-tube we are home with her and running fluids as much as possible, and trying to get her to drink water and eat ice cubes to fight off dehydration as much as possible. While hesitant, we all knew home would be the best place for her this weekend. At any point if I feel we are not keeping up and start losing the battle we are take her back and they will admit her and place an IV until her tube can be replaced. 

Sadly while we were SO excited to have seen her get sick and tolerate her new formula Elacare Infant, while sick and not have to totally drop the formula and give only Pedialyte.