I have a question if you or someone else in the medical field wouldn't mind answering.
What all medications would her body require and would blood and urine tests need to be performed in order to monitor her condition? This would be assuming every possible measures is being taken to keep her in her current condition for as long as possible.
I think that's where I got hung up with her being in a facility. I think it was due to Dolan and others bashing CHO for not giving her the same care a organ donor would receive and for not "feeding" her. I just felt like they would never settle for less than this extraordinary care and frankly, I had reservations that her heart would hold out for this long without all the extraordinary care.
Then after they moved her from CHO, there were statements made that she was receiving antibiotics and other? meds and being fed.
I'm just trying to comprehend this all being done in a home setting.
Maybe some of their statements were smoke though and her heart is just continuing to hold on with minimal complications thus far.
Just a guess, as I have no earthly idea what they really are doing, or hope to accomplish.
My best guess is that Jahi's body is not receiving the same level of care and monitoring that is "possible" in an ICU setting, or even a med surg bed in an acute care hospital. If I had to generalize, I'd say what they may be doing could be classified as "custodial care" or possibly palliative care (though palliative is an odd descriptor for a patient who is deceased).
There is an adage in palliative health care that you don't do a test if you don't want to know the answer (meaning, you don't intend to treat).
I could be wrong , but I think any labs potentially being done would probably be "bedside" labs, such as a urine dipstick, urine specific gravity, or a fingerstick blood glucose. As far as "send out" labs to monitor kidneys, liver, etc, I doubt that they are doing this. A LTC center would not have an in house lab, so would have to send out. (And may not have in house ability to draw labs into the proper tubes, etc.) If she is at a private home, same. And whose name would be put on the send-out lab tubes? The bigger question is what would be done with abnormal results? It's not like they are going to put her body on peritoneal or hemodialysis if her kidney function is wildly abnormal. I think they probably have a very limited ability to correct electrolyes. I suspect her liver function tests would be pretty abnormal at this point.
I know a body has diabetes insipidis for a "while" following brain death, but I have no idea if it continues beyond 6 weeks to 2 months duration? If she is still having DI symptoms, they might "chase" it with vasopressin to slow down how fast she is losing fluids, and try to keep her BP up, but if her kidneys are in the process of shutting down, I could also see retention of fluids and low urine output. They might be giving her thyroid hormones, but the dose wouldn't necessarily be dependent on a lab value. All this is dependent on a doc to write a prescription, and a pharmacy able to fill it.
Her heart is only 13 years old, and even with the cardiac arrest, must still be in good enough shape to pump regularly and sort of effectively without too much intervention. Pre load and after load is a big issue, as her body has lost the ability to regulate the expansion and contraction of her peripheral circulatory system. I doubt they have ability to do hemodynamic monitoring beyond external BP cuff pressures.
She may or may not have a central IV access line, but I doubt they would use it for central venous pressure monitoring. I seriously doubt she has an arterial line for BP monitoring and blood gas analysis, so any ventilator setting changes would be based, probably, just on physical symptoms, perhaps end tidal CO2, and pulse oximetry. And "guesswork".
I suspect her body is refractory (less able to respond) to a number of vasoactive drugs at this point. She may no longer be responsive to vasopressin. Who knows? There aren't too many health care providers who are "experts" at caring for brain dead patients 2 months out from brain death.
I highly doubt she would be a candidate to receive blood products, so monitoring those labs might be kind of pointless.
I think they probably provide hygiene care, skin care, turning, bathing, mouth care, lubriating eyes, trach care, peri care, etc. All that is fairly straight forward, and doesn't require a high level of skill, except trach care. I think she probably has lots of lung issues at this point-- even with antibiotics. Lots of atelectasis (small airway collapse) fluid filled areas, "pus" and either dried out thick secretions, or soupy secretions. She has no ability to mobilize secretions, so is dependent on suctioning, aerosolized humidification and medications, and maybe lavage (fluid instilled to thin secretions). They might be dripping some tube feed solution into a PEG. They might be giving IV vitamins or hyperal (TPN), and/ or lipid solution. Who knows what their capability is?
I do know that she will progressively deteriorate. Her periphery, in particular, is vulnerable to dehydration (tip of nose, lips, ears, fingertips, toes), as well as poor circulation. Eyes are vulnerable to drying out and becoming gummy on the surface, and would need protection and frequent lubrication. Her gums and the lining of her mouth may slough. Fungal infections, like thrush, are a constant issue, and she may have a coated tongue (white patches), or it could be blackened if her mouth is open all the time, or may look sort of normal. (There is only so much you can do with a sponge on a stick and a toothbrush.) Areas of skin compression may not have circulation restored just by turning her in bed. (I don't want to think too much about perineal care issues, but things like fungal infection is a realistic issue down there, too, along with urinary tract infection, etc. She may have a urine foley catheter, or be diapered. There may, or may not be bowel issues.)
Organ systems
will shut down. How long that will take is anyone's guess.
The above is my best guess. I'd be interested in hearing any other health care professional's opinions, too.
