I peeked at the blog yesterday and realized that its not going to update itself. I don't know what I was thinking...
Monday was my birthday. Started off to be a pretty good day. I had gotten the call about getting the house on Saturday, the project at work had gone extremely well, and I walked in on Monday morning and nobody was cringing at the new database. I was going to go see my girl, and I was sure to at least get a call from my boyfriend.
Later in the morning I got a call from Dr. Physical Medicine and Rehab. I had been waiting for this call - when was Sara going to get to go to Vallejo Rehab. Well, she's not. Apparently, they decided after all that she is not a candidate for rehab, only for family care training. Wait, what? We discussed how far she's come, what she's doing, etc. Apparently that doesn't matter. They judge whether to commit resources to rehab based on their "expected" outcome and that is based on their diagnosis. So, someone looked up the code for Locked-In Syndrome (344.81 for anybody curious - I looked it up.) and pronounced her a lost cause. I don't remember most of the rest of the conversation but it went something like "very sorry", "supportive care", etc. Even writing it down makes my head go numb again.
About a half hour later I get a call from another discharge planner. I've had such good experiences with them...(grrr). She said she just talked to the doctor and understands that Sara is "not viable" and should just be transferred to long term care. This again. After some terse words with the woman regarding the use of "non viable" in description of my child we started dancing around the next step. Although Sara is not ready to move, they want to start the process of getting her placed somewhere. And then I did it...kind of lost it a little...told her to package her up I'm bringing her home. I was not going to have my daughter go to a nursing home again - wasn't going to let another place take a whack at killing her - everybody is dusting their hands off over her - we'll take our chances at home - if they don't believe in Sara they just don't know her, etc... The woman didn't speak very good english so I'm sure she didn't understand most of what I was saying. But, she did say she'd setup a discharge planning meeting with the doctor and the rest of the team for this Friday. We will plan the transition.
Ah, the doctor. I have been calling and leaving messages for him to call me all week. No response. I'm tempted to hunt him down in the hospital and shake him. But, anybody who doesn't want to work with me on her care, well, screw em'. He's rotation will be done on Friday and then he can dust his hands off..
The reason I've been trying to get ahold of him is related to some of the issue she's been having with the tube and secretions lately. Not getting any traction with getting ahold of anyone to actually DISCUSS her care with, I turned to my buddy, my pal, you know him from your computer, start of stage, film and the tabloids...it's the Internet. (all doctors cringe when families get digging on the internet...) Well, I did. In two days I have learned quite a bit of stuff on pulmonary rehab, tube weaning, secretion causes and remedies, the pulmonary toilet (look it up - not as nasty as it sounds...but its an actual term), emergency airways, different types of traech cannulas. I'm loaded up on information, have a plan, and a list of questions for whichever doctor whould like to entertain helping her through this stage. Well, it is Thursday now, and I STILL havent' heard from him. So, last night I talked to Sara about it and we're going to do it ourselves.
I talked to her about all the stuff I learned. Neck and lung anatomy, how it is supposed to work, what happens when you have a traecheostomy, why her secretions have increased, what the drugs she's on are able to do, and what they are not able to do. We talked about what is considered a standard approach to ventilator/pulmonary rehab, along with exercises, etc. We talked about incentive spirometry, but I don't know exactly how we can do that while she's still on the T. I did come up with an exercise for her when she has a little bit of mucus sound from her tube - blow slow and deep (since she growls) and push push push push every bit of air out to make the longest growl...then the biggest fast deep breath she can. I told her to do that a few times a day on her own and that will help a lot.
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Is There any way to get Sara Re-Evaluated to changer her diagnosis?
ReplyDeleteConsidering the fact that Sara is already doing things that patients with "Locked in Syndrome" can't do, like moving her head, I agree that maybe she should be re-diagnosed. Is there any hospital superviser who could get involved?
ReplyDeleteI'm not sure what attempting to re-diagnose Sara would accomplish. In my readings, there are three degrees of Locked-In Syndrome. Complete would be complete tetraplegia and ONLY eye movement. She is obviously not complete. Dr. Neurologist said that he suspected she was not complete when she came over from UCDavis.
ReplyDeleteUnfortunatly, there is no delineation in the coding for Complete vs. partial or minimal states. And, since there is no standard treatment or reasonably assured outcome, the medical community has to draw some limits as to what they will do for ANY locked-in patient. They base their lines on "evidence-based outcomes". Which means, using what they know NOW and seeing how effective it is at total recovery. Yes - total recovery.
That means that she remains in uncharted territory. Just like her to leave the beaten path and blaze her own trail...even a hard one...
Incentive spirometry is easy to rig up with a trach, just takes a 15 mm barrel adapter to replace the standard mouthpiece. Corner the next passing RT and ask him to fork one over, its a disposable non-chargeable item.
ReplyDeleteWhen you get Sara up and going, and we all know you will, drop by the Rehab center and show them their "NonViable" patient! That'll blow their minds!
ReplyDeleteSara has so many things going on, I'm sure there is more than one diagnosis code (ICD-9). If her stroke was in the Basilar Artery it would be 433.01, Pons Stroke 431, if she has a trach then 518.81, Spasm of Muscles 728.85, etc. Have the Neurologist, General Practitioner recode her, and include ALL diagnosis codes. http://www.icd9data.com/
ReplyDeleteSara NEEDS rehab. Fight hard.
She has a Physiatrist (a physician specializing in physical medicine and rehabilitation). Get him to fight with you. If he won't, then contact one from Kaiser Vallejo Rehabilitation Center to come and make an assessment/eval on Sara. If Kaiser Vallejo Rehabilitation Center is any kind of rehab place, they are familiar with Locked In / Brainstem Stroke patients.
You can do this. Sara needs you to fight for her.
My prayers and thoughts are with you both.
Sara does have a big handful of codes associated with her different diagnosisisis. I only stated the locked in because that is the one driving the majority of the prognosis determinations.
ReplyDeleteI have been fighting for her - every day. There are days that fighting for her and watching out for her are harder than dealing with her condition.
Sara was evaluated by the former head of the Vallejo Rehab center herself. She is one of the top physical medicine and rehab specialists in the country. She is tied, as is everyone else within the process, to adhere to certain guidelines for treatment.
I do understand, although I am so frustrated by it and frantic on Sara's behalf sometimes.
BUT - As I told Sara - If they won't go the extra mile then we will. I will learn anything I need to help her. We will believe in her and teach medicine a new definition.
Although I am disappointed by their decision, and hurt by the assessment wording, it wouldn't serve anybody for me to parade her back with a "non-viable, huh?"
No, who Sara really wants to stand in the face of is the doctor who told us she was brain dead...
Anyway, she's going to come home and we will rehab her ourselves. There can't be a more loving or supportive environment... There will be no pre-existing limits... And you can't live in a better community than Rohnert Park/Cotati. The way I see it, they've just given us an opportunity to let her get back feeling human, more herself. It's time.