Under the weather... together

Cousins Jackson and Preston

We had a great weekend planned... My brother, sister-in-law and brand new nephew were going to be in town for Friday afternoon and Saturday. The loosely-laid plan was dinner and hanging out on Friday and beach time and exploring on Saturday. Unfortunately, Miss Gracie's body had other plans. And, since Baby Jack had his first shots, he wasn't exactly himself either. With both of them under the weather, we just hung out a bit and enjoyed the time we had together at our house... together being the operative word! It was our first time meeting our sweet nephew/cousin and we are positively in love!

Uncle Brian and Bubba



Mommas and their little men



Gracie's still not feeling well now - late Monday. Her 2pm feeding on Friday didn't agree with her and she hasn't felt well ever since. She never even left her room on Saturday - - she went in on Friday night and came out late Sunday morning. She's not handling her feedings, gags when she sees the G-tube extension, has unusually excessive saliva (even with maximum medication to dry her up) and is very restless when "sleeping." We haven't been able to nail down what's wrong, we just know that she's miserable and far more comfortable with a completely empty (including Pedialyte) stomach. And, now that she has tubes in her ears again, her left ear is constantly draining her excessive saliva... which, because of the way it feels, makes her absolutely crazy.

On Friday and Saturday nights, I suctioned her every 10-15 minutes... all night. She couldn't relax, needless to say, and by Sunday afternoon, I was slurring my words and walking aimlessly around the house trying to remember why I had gotten up in the first place. John took over on Sunday night so I could get some rest, thank goodness.

On Monday, she had an appointment at Shriner's Hospital Los Angeles and even though she wasn't 100% better, she did enjoy the car ride and fresh air. Gracie was previously followed at Shriner's in Sacramento for her scoliosis and when we moved, she was transferred to the LA hospital. We spent a half an hour in line just to register (that never happened in Sac), we spent another 30 minutes waiting to be called into an exam room, we spent 55 minutes waiting in an exam room before we saw a doctor (Gracie nearly fell asleep), we spent 5 minutes with that long awaited doctor who then sent us to radiology for Xrays (something that was always done before the exam in Sacramento) and then upon returning from radiology, we were told that the doctors were going to lunch and we could wait or come back in twenty minutes... or so. What? (I get that they need to eat, too... but, really? They were standing right in front of us and saying that they'll be back. Ugh.)

So, I opted for a walk around the building until the doctors got back from the cafeteria. The nurse gave me a pager and said she'd buzz me when they were back. Finally, after another 30 minutes, we were buzzed back. The doctor and a Nurse Practitioner (both very nice) informed me that, just as I'd suspected, the curve in Gracie's spine that had been stable for a few years is no longer stable... and has now (as her PT had suspected) caused an additional problem in her pelvis, which is definitely to blame for the dynamic leg-length discrepancy we are seeing when she stands and walks. And, because there is not a spine surgeon or ICU at the LA Shriner's, they cannot provide Gracie's care.

Yep... we'd been referred there... transferred there from another Shriner's. Her file had been reviewed, we'd waited weeks for our appointment and spent over three and a half hours there. And. They. Can't. Take. Her. Case. Seriously?
It's a darn good thing that John had let me get the rest on Sunday night, because if I'd been completely sleep deprived still, I might have not been so polite. Things happen. This was, however, a completely avoidable thing and the staff at Shriner's realized that. They were incredibly apologetic. Several people spoke to me about how sorry they were. Even if they currently had a surgeon on staff, the fact that they don't have an ICU to monitor her postoperatively means that she can't be followed in Los Angeles and anyone who looked at her chart should have been able to realize that she needs an ICU. So, we will lose our referral to Shriner's (she's been a patient since she was a baby) unless we want to travel back to Sacramento for all spine/orthopedic needs - - and that's just not feasible.

They were nice enough to immediately copy her films and medical records - - not just because of the blunder - - but because of the deterioration of her previously stable curve, they feel she needs to be seen by a surgeon immediately. We have always known that she'd need surgery to correct her spine, but had hoped that with the lack of change in the curve over the last few years, it could wait until she was twelve or thirteen. It doesn't appear that this is the case, now... but we won't know more until we can meet with the surgical team at CHOC.

Within five minutes of getting in the car, Gracie was sound asleep. When we got home, I gave her a bath, gave her a feeding and then her breathing treatments. She fell back to sleep halfway through her breathing treatments and woke-up around 11:15pm. I am guessing she's up for the night now...