Ups and downs as of late...

Moving past the pancreas and the colon, we are now on to bladder issues. With the prolonged use of the dilaudid and the added methadone we are transitioning to, seems the bladder has been a little too relaxed for a while, adding in the frequent bladder infections/UTI's, it has been an uphill battle. It's always trial and error trying to read Gabby, not entirely sure how long this pain has been going on, since we have been trying to get her off the dilaudid and figured most of the pain she was exhibiting was from those reductions, but possibly caused by the onset of the bladder retention and spasms. Her retention got so severe, we are now having to intermittently catheter her every 3 hours to keep her bladder from continuing to stretch. For instance, a child of her size should void when her bladder fills to about a max of 240ml, and last weekend we scanned her at a little over 700!!!!! OUCH. Breaks my heart in so many places to think she's been hurting this bad for so long and we just didn't know. From what I have been told. bladder pain and spasms are excruciating and there is minimal treatment options out there. We have found a short duration use medication that numbs the bladder, and it's been our lifeline this last week. On Tuesday (7/10) we have a urodynamics test scheduled to read the pressures in her bladder. I really am not sure what we will do with this information, luckily we have an appointment the same day with the head of urology! (lucky us, we hear fabulous things about this doctor) On the note of that said dilaudid, one more drop then we are OFF! Tomorrow we switch to oral methadone then Tuesday will be able to take the dilaudid away FINALLY! (well, that is if the methadone from IV to oral goes well, always a chance that can take a couple days to get the dosing correct.) Tomorrow marks 17 completed weeks here. I really have a difficult time wrapping my head around what that means. I have to remove myself from the reality of it all since truly feeling what we have endured, actually what Gabby has endured, would be devastating. I do know that without the continued support of my family, friends and Gabby's family that I never would have survived.....and that would have been even more overwhelming for Gabby. 

Part of the reason this post was so delayed was not only were we dealing with life here, I was forced to face my greatest fear when the news of our sweet friend Jackson's sudden passing hit my heart. We were lucky enough to spend some time with Jackson and his mom Tracy while we were on our MAW trip to San Antonio last year. She was the first mom I had met in person with a child like me, and I was in awe at how comfortable I was with her and Jackson. I had never known how much I desired deep down to connect with someone who just understood on every level. How seeing her prep his G Tube and navigate his chair through the crowded streets made me feel at home. We even traded kids and my mom took Jackson's chair and let Tracy just stroll with us and visit. His passing is a devastating loss to the family and everyone who was blessed to have seen him smile. RIP sweet boy, and know you are in our hearts forever. And to the entire Sexton family, thoughts and prayers are with you now and always as you forge ahead and find your way.