[mola-tecta]

I haven't updated in awhile, things had just gotten very overwhelming for me and I couldn't even think clearly.

To sum up, my mother wasn't getting any better at home even with home PT and was still refusing food, etc and extremely weak, barely even able to make it to the twice weekly clinic appointments without immense effort. She was extremely dependent on me for everything. I don't think I slept for more than 20 minutes at a time for a week.

After another fall at home, I made her go to the ER. From there the ER doc made sure to check for any acute problem like breaks or fractures, and was ready to send her back home since she had no immediate issue. I somehow must have gotten my fears of her condition through to him and he contacted the case worker who was able to get my mother checked into a rehabilitation facility.

So far this seems to have been a very good idea. They are keeping her well cared for, taking care of food, medication etc while she is receiving PT and OT 2 to 3 times a day. They will even do the twice weekly bloodwork (I don't think they are very good at it though, they seem to be intimidated by her PICC line) and arrange for transport to the hematology clinic as needed. In a week she has made some good progress in getting stronger but is still probably a good 3-4 weeks out from being able to go home.

Food for her is still an issue. Some of the nausea has abated but she still has absolutely no appetite and is extremely sensitive to food tastes and textures, some of them even make her immediately gag and throw up. Speech therapy has been with her as well but I am not sure if there is any structural problem causing this or more of a taste, texture psychological one. She even gags on the pills sometimes. Exhaustion seems to make it much worse.

The hematologist has been absolutely no help in this... no help in trying to fix the lack of appetite or reduce the pill burden. The only one he was willing to go down on... was the Promacta??? I have no answers as to why she is still taking B12 and folic acid despite the blood levels being off the charts high. Nor do I have any answer as to why she is still on levofloxacin or fluconazole still.

He keeps harping on her to get a PCP, which isn't a bad idea, but what is a PCP even going to do when no other doctors have been willing to change my mother's medications because of him? The doctors in the hospital were aghast she had been on levofloxacin for 9 months and tried to cut it out but the hematologist adamantly refused and they followed because it's "his protocol".

The verapamil seems to still be causing swelling and other issues but no one is willing to touch it without her seeing the cardiologist, and god knows how long that might take.

I guess... the good news is her blood numbers are still staying mostly steady? She was given a COVID booster which seems to have dipped the numbers very slightly, but her Hgb is still 9.5, platelets 68, ANC 3.4, retics at 3%. Creatinine and eGFR still fluctuate but are better than they were.

I am really hoping the time at the rehab facility will help my mom. She seems to be doing better than she thinks she is, and is able to push a tiny bit further every day. The eating issue is really messing things up.

I'm exhausted, frustrated, confused and still frightened while trying to balance a sense of hope for improvement. The anxiety is eating me alive every single day hoping she will try to eat a little more, try to drink a little more, hope she doesn't gag taking her pills and throw them all up, hoping the PT/OT won't exhaust her so much she'll refuse to eat, etc...