Thursday, August 18, 2016

Tube change and PM&R follow up

Today was a super busy day for us all! Ryan had speech therapy first thing this morning and then we came straight home to meet the teacher at his new school! After that we headed home and got ready for a even busier afternoon. We loaded up both kids in the car, dropped Ryan off at ABA, and drove to Dell for Reagan's gj-tube change. We have noticed the last several days her tube has been a little leaky and then yesterday we realized that the lock is also broken so the tube just freely spins around (making it more susceptible to popping out) at 4 months again it's definitely time for a change. They were able to squeeze her in at 2pm, giving us just enough to get that done and then head over to her PM&R appt. While we were waiting, I was texting with the DME rep about the carrot carseat and that we weren't sure if it needed more adjustments (this was the first time we had used it in the car), and the rep was able to just come meet us there since she was close by! So she was adjusting the carseat when they came to call us back. She continued making adjustments while we went in and had Reagan's gj-tube changed. Reagan was super calm and patient, which is good because the doctor again had an issue getting the tube out. The last time it was the balloon wouldn't deflate all the way, this time it was the tip of the tube that didn't want to come out! She was a rock star as always and just laid there being an angel. Once it was finally replaced, we took a quick video so I could document the broken lock, and then we loaded up and headed over to her other appt. This was basically just a follow up appt to talk with the PM&R doctor about the fact that the myobloc (botox B) didn't work at all this time. It doesn't really leave us with any options. In my mind, surgery is NOT an option. It's too risky that she'll have a negative reaction to the anesthesia or surgery/pain and often times kids go through these surgeries and have no lasting benefit. The oral medications aren't really a good option for her either because you can't administer them as needed and I refuse to drug her up all of the time. At this point we really just have to stretch and use AFOs to try to get her upright and weight bearing and that's the best we can do. We're not going to reverse her super pointed feet, but hopefully we can find ways to work with them! My sweet ballerina! Such a good, laid back girl today!


Clarissa R. West said...

Abigail needs her gj tube changed too... she goes several months between changes, which I'm thankful for since she does not tolerate getting the change done while awake. And I hate having her put under so often.:( I think it's been 10months or so! Gulp... I better call and make an appointment. The j-tube valve always starts leaking and then I know it's time to get it changed. :p
Glad Reagan had a good day!

Reagan Leigh said...

We've never made it that long with a GJ! The longest was 6 months but then it broke on us and we ended up in the ER on Mother's Day! Thankfully Reagan is awesome during the changes and there is no need to sedate her!