Really, part deux

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So we had us a little birthday party the other night... I couldn't help myself.
 
Hi everybody... somebody pointed out that I haven't posted an update in quite some time... sorry about that. The last few months have been a long, slow uphill battle with little remarkable about it. Lee is continuing to work on getting stronger, but still sleeping a lot and still having trouble with speech and eating.

After the last round of antibiotics, we got rid of the catheter that was providing the bugs a path into the body, and that seems to be working out for her. It's more work for her care staff, but they are pretty good about it, and are keeping her best interests first.

I took her to the city the other day to be fitted for a custom wheelchair seat; what a process. They set her in a chair with a beanbag seat (malleable, full of little polyhedral glass beads). They then spend time poking, prodding, pulling, and generally moulding the seat to fit her butt and her back, then when everyone thinks it is ok, they turn on a high vacuum source that sucks the air out of the beanbags and makes the edged beads stick together in place... it 'locks-in' the shape. They pull her out and put her back a few times, looking for anything that doesn't fit quite right, and then then took a 3-D scan of the seat and send it away to be built. Should be back in a few weeks, then we start the process of choosing a wheelchair for her, and hopefully that will help her to want to stay up and out of bed more.

Back in September, I threw a wreck with the doctors about her jaw not opening properly and finally got her on the MRI list and the doc is setting up a specialist consult to have somebody check her jaw out. This has been an ongoing source of frustration for me; virtually nobody is really good at this... it could be structural (something in the joint itself, like the TMJ articular discs being displaced (which can only be seen on MRI), it could be neuromuscular (with the muscles controlling the jaw being in spasm because of pinched nerves, brain lesions, hydro pressure, or TMJ issues), it could be postural (because of spinal muscle spasm which is messing with her posture), or any combination of the above.

The Physio guys might have some expertise, the dentists might have some expertise, the chiropractors might have some expertise, the doctors might have some expertise... but nobody is likely to have much, and getting them to work together on this is (pun intended) like pulling teeth. This joint seems to be an orphan, not really managed by ANY of the disciplines.

So we're now waiting for better imaging. Apparently, they need permission and consultation with her neuro guys before doing another MRI ... she has some platinum wire in her brain, and her shunt is magnetically adjustable... so just randomly sticking her in a big magnet isn't a great idea.

Once they get everything lined up, maybe we can find out what is wrong, and then see if anything can be done. This is a big issue for me... with a mostly-immobile jaw, she has trouble eating, swallowing, and talking; there is the issue of oral hygiene (we can only GET at the outsides of her teeth... ); if she needs dental work, there is damn little we can do... and then of course, the spectre of possibly needing to be intubated, which wakes me up at night.

And vision... we are trying to get back into see the Opthamalogist who did her eye surgery last year (2 years?) to see what might be done to get her seeing better. At least then she could read the laptop and communicate with people. The local optometrist is over his head with Lee's vision, and the Opthamalogist we saw last fall was a dork that I almost clobbered because he was so rude to her, so we aren't going back to him. The vision thing is probably why she hasn't been watching much skating; she really has to work to watch TV or a computer screen. I read her the results, and PatC fills her in on some of the skaters by email - I can't pronounce half of the names and have NO clue who they are, so my reading is probably hilarious, but she likes to hear and tells me who is who when I ask, so she is still at least a little in the loop.

I have been able to get out a few days to work, which is good, but I'm still sticking pretty close; I don't like being more than a couple hours away from her, and she hasn't been able to phone me hardly at all since she got sick in the summer; it really took the wind out of her sails, and she is not yet back to where she was in early July.

Anyway, that's about it. She is stronger, still coherent and 'with it', but this is all very hard for her, and long days with hardly-perceptible growth really wear on a person. We just try to stay positive, keep doing what we can, and live for the moments. Thanks for thinking of us; I'm sorry I haven't written for a few months, I'll try to do better.

Gerry
 
Appreciate the updates. I think about you both especially at this time of year when skating resumes. I’m glad you’re trying to keep her in the loop. Names are very hard to pronounce, for sure. Pass on my regards, even though we’ve never met. Everyone on FSU feels like family to me.
 
Thanks for posting @Gerry and for taking such good care of our girl.

Thinking about her jaw, are there any maxillofacial surgeons in the province who have military or trauma surgery backgrounds? Down here, they seem to be the only people with the depth of experience to properly diagnose and treat the things that stump most docs. Or throw her case to the med school and see if they can qualify doctors based on case reviews? Fingers crossed that you find someone with the right skills who might enjoy helping Lee.
 
Aceon6 said:
Thanks for posting @Gerry and for taking such good care of our girl.

Thinking about her jaw, are there any maxillofacial surgeons in the province who have military or trauma surgery backgrounds? Down here, they seem to be the only people with the depth of experience to properly diagnose and treat the things that stump most docs. Or throw her case to the med school and see if they can qualify doctors based on case reviews? Fingers crossed that you find someone with the right skills who might enjoy helping Lee.
Click to expand...

Thanks for the suggestion.. I will follow-up on that. I went to the U of A Med School of Dentistry to talk with some of the instructors about this, and they recommended a surgeon, so we're trying to get to him for a consult, too. Why couldn't Lee need something simple, like open-heart surgery?
 
Gerry, I'm so sorry this mix of recovery and setbacks continues to be so long, confusing, and hard for you both. In all this time, I don't think I have heard you sound so weary and frustrated.

You are such a champ! Please, please, build some time into your routine for things that will give you joy/content/peace/intellectual stimulation -- whatever YOU need to stay sane. You need it so desperately amid this grinding process.

I pray for breakthroughs for Lee and answers and relief for you. God bless you both.
 
Aceon6 said:
Thanks for posting @Gerry and for taking such good care of our girl.

Thinking about her jaw, are there any maxillofacial surgeons in the province who have military or trauma surgery backgrounds?
Click to expand...

I second this. I was treated for a (much less serious) jaw problem by a maxillofacial surgeon.

Regardless, I'm so glad she has you as her advocate! This is what I want in life - someone who will fight for me when I can't fight for myself.
 
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