[mola-tecta]

I haven't posted here in awhile. Things were not great for quite some months and I didn't have the energy to try and write anything. I still don't really feel like I can properly explain everything, but now that things are looking much better I can finally make an update.

The quick, dirty version is that once my mom came home from rehab, she was still very ill and fragile, and still barely able to eat. Her mobility quickly degraded again and she ended up in the hospital again. There a doctor we've seen before (who I genuinely like) was going to run some various tests on various deficiencies, start involving other practices like neurology to see what was going on, etc. Unfortunately he was off-service after a few days and the hematologist who took over dismissed all of it and said she just needs to go back to rehab.

They also tried adding medications to stimulate appetite, except they caused florid hallucinations and extreme somnolence in my mother. They first used Remeron and then when I complained about her somnolence they tried Marinol, which wasn't much better. She was sent back to rehab this way.

After only about a week and a half of her continuing to degrade and still messed up on medications, they somehow dragged her to the hematology clinic for a routine appointment and immediately sent her to the ER with blood pressure in the 80/60s, Hgb of 6, electrolytes critically low, blood sugar very low, and unable to move from bed. I had no idea they had sent her to the ER because my mother wasn't able to communicate with me and no one contacted me due to confusion between the hospital, hematology clinic and the rehab facility. I only found out the day of because I happened to be checking her online medical record to see if she had an appointment coming up and saw the notes from the ER physician pop up.

Anyway, from there a couple of doctors took over her care in the hospital and I genuinely appreciate and respect them, because they actually listened to me, took all of my concerns seriously while also doing a great deal of research and keeping me in the loop with everything. Both of them are internal medicine but they only practice with inpatient hematology/oncology. Dr. B and Dr. M, if you guys are out there you are a model of fantastic, comprehensive medical practice.

Quite a few tests were ran, including a lot of vitamin, mineral, neoplastic, infective and endocrine panels, as well as a full MRI on brain and spine, a nerve conduction study and an echo of the heart to find the cause of my mother's spiraling.

Thankfully the MRIs and other tests actually came up clean, which is very reassuring that there is no other sinister disease lurking. What did come up, and I think surprised the doctors as well as me, is quite a few vitamin and mineral deficiencies associated with severe malnutrition, the biggest worries being thiamine, zinc and copper.

Copper was surprising, and I'm sure that we have all read the heart-crushing story of Chirley here. Copper deficiency is very rare and can cause serious hematological and neurological problems. Thiamine (vitamin B1) deficiency is also called beriberi and can also cause serious neurological problems. Zinc also causes neuro problems as well as things like loss of appetite.

My mother received IV copper and thiamine for multiple days in the hospital and then was continued on oral supplements. Still unable to eat, it was agreed upon with a dietitian to start her on nasogastric tube feeds. With these, she started making quite a bit of recovery.

Once her electrolytes, blood pressure and blood sugar stabilized she was sent back to rehab again and this time has made a fantastic recovery. She was able to build a lot more strength and coordination and has fully regained her cognitive skills. She still walks with a walker (she used nothing before all of this) but has been getting PT at home and is getting stronger and stronger. Her appetite is back and she is eating far more normally.

We also FINALLY, FINALLY got rid of the levofloxacin, fluconazole, Exjade and verapamil. Her blood pressure has been perfect and her ferritin is currently in the 500s.

Most of all, as of her last hematology appointment, her Hgb was 10, ANC 6, and platelets were 156!!! This is the first time they have been a NORMAL count since long before this all started. She has also been taken off of Promacta to see how her counts will do without it.

I am really hoping that her numbers will continue to improve and stay stable. She is also finally feeling much better with no more swelling, heavy bruising and petechiae, low blood pressure or screwy electrolytes.

I don't really know the reason why things like her copper and vitamins were so depleted, the doctors were unsure of how long the deficiencies had been there, and if any of the medications she was on were seriously depleting them too. I hope that being the crazy daughter that researches everything helped point the doctors in the right direction, and they seemed to actually appreciate my input and would talk to me at length every day (how many doctors will make time to call you personally and talk for 20-30 minutes every day?)

My sad news is that my grandfather, who had been on home hospice for a surprising 16 months, passed away. In the past few months my mother had been far too weak to see him, even though she primarily took care of him before she got sick. She was, however, able to go to the funeral, and did really amazing for how much we were running around all day.

That's it for now. I am thinking of all of you and how much help you have been to me, and hope you are also doing well. Take care.