Around the world already?

80 days! (well 81 really). Silly to think I could have been around the world via hot air balloon in the same amount of time!! Instead, our 81 days have involved so many other 'trips' and visits on more of a local scale, but in some ways as exciting, definitely as informative, and made some new friends we shall cherish forever. In a nutshell Gabby has had: a PICC line (peripherally inserted central catheter) in her arm that was finally upgraded to a double PICC for all her medication and nutrition needs while her pancreas heals, a g/j tube placed in lieu of just her usual g-tube allowing us to give her tummy all the rest it needed and keep meds safely administered as well as allowing us to transition off the IV nutrition to more of a 'normal' formula regime (and had to be replaced once), numerous ultrasounds to keep track of her abdomen, xrays for lungs/ribs/g-j placement, CT scan to diagnose colitis, frequent checks for UTI's (including a bacterial and yeast UTI), a nightmare night full of nasty seizures, 2 respiratory viruses just after what we were originally admitted for....her tonsils out!

I have had a lot of time to reflect late at night, and I know a meaning is here to see. I have learned so many ways to 'read' Gabby I didn't know before. This has given me such an opportunity to just be with her, talk to her, learn her. I just wish with all my heart it wasn't accompanied by so much discomfort for her, but I truly feel her purpose is to teach, and KNOW she knows I am learning, and our lives at our real home will certainly be better because of this. 

And just when I feel we have seen it all around here, in comes one of our favorite CNA's with a bag with an awesome special treat for Gabby! A local company named "Tubie Friends" create these bears with feeding tubes to help kids and families with tubie kids. HOW FANTASTIC!! I can't wait for Scarlett and Shea to get to take care of our new friend like they takes care of Gabby. 

Forgot to mention in all of this, I ended up with an emergent root canal, and having finally had the finishing touches yesterday my mouth is sore from all the clenching and crap that goes a long with it. Muscles spasms in my jaw and all....so pain med and bed is what this 'doctor' has ordered.

Regan making sure Gabby was 'OK' today :)

  

Ticket please....

Time to get back on the ride that is 'life at the hospital'. I stepped off the ride for 2 nights (yep, you saw that correctly, Gabby's dad came and stayed here for the 2 nights with her. This was a huge step for me!) I had some wonderful, non medical adult conversations and quiet, peaceful sleep in my own room. I got great updates on Gabby while I was away, and I was confident she was in good hands. 

Just such a cute expression!

Happy Girl today with music and sensory

Hearing that her plumbing has been working on it's own, and lots of 'code browns' being called was both exciting (most of you parents will know what I mean :) ) and a little off setting. Where were all these codes coming from? I got concerned when it took almost an entire bottle of their natural room deodorizer and some Aloha room spray we got as a gift from Hawaii to refresh the air in the room. Docs and I agreed we needed to look for an infection called c-diff. That test came back pretty quickly with a positive for the presence of the bacteria, but negative for the toxin. (sounds good!) Still, we are waiting in the isolation wings until the more specific test comes back negative before we are free to enjoy all the hospital has to offer, and get back to getting outside to the fresh air. In the mean time, we have been spending our time wisely with lots of arts/crafts and sensory time! We even painted with Gabby's feet, and gave the nurse a little startle when Gabby's toes were a little blue! HA AH AH.....(love finding fin ways to keep people on their toes). Hopefully our next update I can share that we told the isolation crap to take a hike!

Making the best of a sticky situation

Feels nice to sit here after another day with this admit and actually say, "It was a good day!" To be accurate though, I would have to mention it really is our third good day in a row! So, when we get to these days of feeling better and biting at the bit, what do we do?? Today the answer was PAINT! After getting situated in our new favorite chair, her nurse (I will call A.) came in and said "YAY FOR ART DAY!" and rolled up her sleeves and got right in to the sensory fun of painting with a, (hmmm, what do I want to call it) squishy light up caterpillar we got Gabby for sensory. It was a great tool to paint with. Not only did we cover a lot of paper, but Gabby could hold it, and the colors turned out gorgeous. It warmed my heart to see A. fully enjoying her time with Gabby, and telling everyone that walked in the room that this was her best day ever. Also wonderful was the fact that the other staff kept a watchful eye over the other patients to allow A. this time with Gabby and I. So many smiles and moments of pure laughter and joy seen today. I hope the staff can pocket these moments for the days filled with everything but the smiles and laughter. I can't say it enough, this place is amazing.

Time for the real update! Welcome to what's affectionately now known as "Gabbigan's Island" room. We came up with that term today when I was talking with a hospital employee about our stay here. What was to be a 3 day stay has turned in to an 11+ week stay! 

Today was a good day! Finally see some decent pain management with the using the medication "gabapentin" for chronic pain. (Or as the doc calls it, Gabbypentin) Our attending doctor today was happy to see this med working, and said that in a small study of kids with neurological issues like Gabby, the pain in the 'gut' is greater than in a typical kiddo so some long term, non-narcotic medication will be helpful. I was surprised that the doctor said Gabby would be on the medication long-ish term, but the discomfort of getting her 'gut' working again could take a while to subside. SO HAPPY they are on top of things like that and can allow us to keep her comfy and get her strong. 

I hope to keep updating this often, with all the good, the silly, and the stuff we just call life. Thanks for reading! More soon :)

Welcome to Gabbin' about Gabby! So many people are always asking me about her, I just finally thought it time to get with it and share her story in one easy place. I am new to 'bloggin', so bare with me as I get it all figured out!