Stow away germs

We came home from the hospital all ready to face the week, yet we are dealing with more than we bargained for. Seems some little germs packed themselves in our stuff, very uninvited for sure! Fever and lethargy took over on Wednesday then the crud sounding breaths. Ugh..so off to the pediatrician we went yesterday and as we were talking about the night and how Gabby was looking I causally mentioned that blow by O2 would have been nice to just let her sleep with a little support, but not BE ON O2. He took one look at me and was like, well why on earth don't we have O2 at home? I stood by my previous notions of, if she needs O2 then we are too sick to be home. He asked me if she looked sick enough to be at the hospital and I said no, and without saying anything else the light went off. So, at 5pm on a Thursday, we decided to have blow-by for nights when she's got a cold and just could use a little support. I never imagined it would be delivered within 3 hours to my home and set up by the super nice Children's Home Healthy delivery guy. It came in handy as I heard the pule-ox machine beep around midnight. Just that little bit of extra allowed her to sleep more comfortably (until the extremely loud and vibrant thunderstorm made an appearance). So, another day of resting peacefully at home it is. I suppose this is life's way of making sure I get my to-do list tackled.....

HOME, no longer the forbidden 4 letter word

Ahhhhh....writing from my couch at home, catching up on some quality TV on the our DVR (wish I would remember to FF the commercials, 19 weeks must equal desensitization of commercials) and Gabby's peacefully snoozing in her own bed. Took the day to unpack all the goodness that came home with us, snuggle, get Gabby and overload of fresh air and recoup. 

I am not really sure where to even start to sum up the last 19 weeks of life. Strangely enough it already seems so long ago. Got right back in the swing of feeds, meds and being just us. On the other hand, I found myself wishing I could know how our next room neighbor was doing, and kept checking the time to make sure I didn't miss the doctors for rounds, and at about 6 pm wondered who the nurse was for the evening. Instead of doctors and nurses and machines, I got Gabby in her chair and we walked around the 'hood' with our next DOOR neighbors. Little Cody pushed Gabby around the entire block, everyone was out and gave Gabby the most loving welcome home. People we don't get much contact with made sure to welcome us with prayers and love and support. I am overwhelmed on so many levels, and just makes me love where I live even more. Yesterday we arrived to a porch filled with flowers and balloons and a living room decorated to the nines with colorful streamers and balloons all over. Was so in awe, and still am, again at the out pour of thoughtfulness. 

I made sure to take some time today to really explore our stay and what it was really all about. I know it was to get Gabby well and heal, but also know there was so much more to it. We learned patience, and I feel no real surprise with that one! To break that down though, we learned patience withing listening to Gabby and really taking time to follow her clues and listen to her voice. She's actually VERY proficient in getting her point across and her needs met IF you take the time needed to hear her. Patience within myself when it comes to the not knowing (which for those of you who know me grasp the magnitude of that one). The not knowing what is wrong and when will we learn, the when will we go home and what will home be like now, and even the not knowing at times who will be walking through the door to share news and what do we do with that news. Forgiveness, now this one really wasn't one I really thought I would experience, but low and behold our little Gabby has her magic way of making things happen, and more often than not, for the better. Gabby has a special way of putting things in perspective, even when you aren't paying any attention. I learned the true art of what was doesn't have to be what IS. Thank you Gabby, thank you for being a wonderful teacher to everyone. She and I were both blessed to welcome in to our lives many spectacular people who have a place in our hearts forever. Seattle Children's Hospital, can't express enough our gratitude for the ENTIRE staff (down to the warm baristas at Starbucks that made sure to get to know you). We are absolutely impressed over and over again.    

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.