Change my button

This past week has been not only long but also frustrating. Last Wednesday I was called to the school to pick Chantelle up because he had a headache and was running a fever. Since I was in physical therapy, I did not get the call right away. After brining her home, I gave the needed meds and put her to bed where she could rest.  Everything seemed to be ok when I put her to bed. Her feeding tubes were flushing, the J-tube flushed fine and the pumps were started. So, off to bed we went.

Then next morning her pump was still running and I was not sure if more milk had been added or if the pump had been pumping but not pushing the milk through. Thursday morning I prepped a new bag for her feeding pump bag, gave her meds through her G-tube, and tried the J-tube meds. Nothing was happening. 

With nothing going through the J-tube I tried to flush the J-tube and Ellie just giggled as the water sprayed out of the extension. We changed the extension, again nothing. Hmmm… slip-tip syringe into the J-tube port and push… still nothing…. Plunger method… pull the syringe and try to loosen the clogged area. (getting really frustrated now) still nothing…

By this point, I had tried everything I knew to try and started calling and texting friends for coke as we have no bottles in the house (we are not normal pop drinkers) and well our friends are the same way.

Frustrated, I called the peds office, the GI office, the makers of the feeding tube, left a message on facebook, HOPING that someone else would have more ideas beyond what we had already tried. With all the methods we had tried at home being the normal methods and the final methods to unblock or check for kinks only able to be done at the hospital, the peds office told us to take her to the ER.

Off to the ER we went with her extra feeding tube in hand. The Dr on call was not sure what the exact protocol for her situation. I knew she needed a KUB (stomach XRAY) to check for line placement. They also had to go through each of the methods we tried at home including one called clot buster. Nothing was working. We spoke with several people; however, we did not speak with anyone from GI. Before we finally left we did have a pending IR appointment. The appointment was pending because we did not know if they would have room for her on Monday or Tuesday.

Yesterday, was her IR appointment to get her clogged tube removed and the team placing her spare tube. I left with Ellie and Ava and we headed to John Hopkins. I have no idea what was going on with the parking garage, but it took a good half hour to navigate the mess of cars, and find a place to park.

Once Ellie was checked in we waited for her to be taken back for her pre-op procedures for her GJ-tube change. As soon as Ellie said she had to go potty, Ava started whining letting me know she too had to go potty. The nurse in charge of Ellie let me talk Ava out while she started some of the pre-op (procedure) things that needed to be completed. As soon as Ava was outside, she went potty. Once back inside, both girls were happy and comfortable.

Well,…that is until I went into the procedure room and left Ava in the hall without me. Poor puppy had no idea how to react. I clipped her to the bed that Ellie came down the on, told her “Ava down,” walked away, and went in to help Ellie. At this Ava freaked out, started whining, howling, and barking. I went out to try and calm her, turned around a went back into the room the exact same way. With this the nurses let me that her barking would not bother them at all.

As soon as I was home we took Ellie inside, played with Ava for a few minutes then Ava and I went to the school where they had dance classes. Once dance was over was over and I could finally rest. By the time meds were done and formula mixed for the next day it was already 9am.