Slow Decline...


Tuesday, September 16, 2014

First half of September

August 25Th – September 2nd  
So dealing with the doctor and hospital has been a fiasco. My dad and I are totally spent, but life must go on. Saying my mom is not better would not be completely accurate. Her infections are gone, so they stopped the antibiotics. She is on the NG (feeding) tube and fluids, so she is getting plenty nutrition/fluids and tolerating them well. But, there has been an issue with her white blood count dropping and she's had 3 transfusions in the last week. They said the blood work looks good now, but the last one was Wednesday. So we will see what it looks like the next couple days. The biggest problem though is her delirium. She is still sleeping alot and not very responsive. She has moments, but even then we are not sure she really understands us. Tuesday will be three weeks, but it feels like an eternity. Saturday I emailed the case worker at Methodist Willowbrook. It was brought to my attention she came to my mom’s room when we were not there. I informed them they are to notify us if there are questions they have regarding her transfer, being that she is still unable to communicate. I asked if she could give me information regarding the notes on my mom’s NG tube, as to who wrote the orders and for how long. The social worker contact my dad again, regarding a transfer. When he asked if she received my email she said “Yes, but I didn’t reply because I didn’t have an answer”. And there you have it.

September 3rd- Wednesday
Dad and I met with the hospital and they were not interested in hearing what we had to say in regards to the care my mom has received. We brought up all the communication issues, but all they wanted to know is if mom could get her PEG tube. We did consent for her to get the PEG tub, but feel like the meeting was a waste of time. They mainly want her to get the PEG because they are having a difficult time finding a place to send her with the NG tube.

September 4th- Thursday
Mom was assigned a new doctor today. Spoke with him briefly over the phone and will meet with him tomorrow. They said she is schedule to have her procedure done tomorrow, no known time.

September 5th- Friday
Came to the hospital early, in case they took her early for the procedure. Only to find out it was cancelled and rescheduled for Monday. Apparently they did not think to start her contrast in her feeding tube so she would be ready for the procedure. So what’s new, someone dropped the ball….again. Mom’s new doctor came and evaluated mom. He sat and talked with me for awhile, trying to get a clear picture of her condition prior to coming in and now. He said he was going to meet with the neurologist to see what mom’s risk were for a spinal tap. The rheumatologist also came by and evaluated mom. He was very concerned about her diagnosis, that it was now possibly Inclusion Body Myositis. He felt that the methotrexate and steroids may be working against her. He was going to stop the methotrexate and begin 4 days of IVIG therapy. He said this is the last treatment option they have for her and we will have to see how she responds to it.

September 6th- Saturday
Right now mom is highly susceptible to infection right now. You cannot visit if you are sick. Even if you are well please wear gloves and we would prefer masks until she doing better, as instructed by her rheumatologist. She will have the PEG tube placed Monday for sure and a spinal tap later in the week. She starts her four day IVIG treatment today, we hope it gives her a boost. We are anxious to get some answers this week. They had to change her NG tube and PICC line. Somehow the NG tube had come out too far, so they placed a new one. The PICC line was infected so they removed it and started her on antibiotics.

September 7th- Sunday
Mom started received the contrast tonight so she would be ready for her procedure tomorrow. She seems more alert today than she has been lately.

September 8th- Monday
This morning the put a new PICC line in and her PEG tube in. Pastor Leeland came by while she was having the procedure done and said prayers for her. 

September 9th- Tuesday
Speech therapy came by today. Cleaned mom’s mouth really good and worked with her a little. She also left her some exercises. Mom’s doctor came by today, he said because of the infection and because her cognitive state seemed to be improving he did not think it was a good idea now to do the spinal tap, but he would monitor her condition.

September 10th- Wednesday
Today the doctor met with to explain mom’s current condition. Today they had to stop mom’s food, she was having some problems with absorption .He said the rheumatologist did not feel her prognosis was good. That she has a slim chance of returning to her base line. That there was a chance or possibility, but that it was very slim. He said we needed to prepare ourselves because would probably get worse and that the possibility of her needing a ventilator were something we needed to think about. He ask about her DNR status and if we had POA. He said because of her current condition he felt she needed to be at Methodist in the Med Center, under the care of the Baylor Neurology Department so he was requesting a transfer. We completely agreed and felt she should have been over there weeks ago. It was a very hard day for all of us. Her white blood count was down again, so will be doing another transfusion tonight.

September 11th- Thursday
Today they took mom’s NG tube out and resumed her food.

September 12th- Friday
The last couple of nights mom has had some bleeding and her white blood count was back down. She will be getting another unit of blood transfused tonight and they are going to monitor the bleeding to see if it’s residual from the PEG procedure. If the bleeding does not improve they will have to do an endoscopy or colonoscopy, which is a high risk due to the anesthesia and possibility of ending up on a ventilator.

September 13th- Saturday
The doctor said the blood was residual, so it doesn’t look like no new bleeding. Since she had the transfusion last night her white blood count is back up.

September 14th- Sunday
Today was a pretty uneventful day for mom, thank God. She had several visitors today and was pretty pooped. We met with family to talk about my mom’s condition, it was emotional and tiring.

September 15th- Monday
Mom had her first PT today and did really well.  The rheumatologist also said it does not look like she is no longer in a flare, but we are not sure how he is determining this. He was pleased with her strength. No news on the transfer to Methodist Med Center, we are still waiting.

Saturday, August 30, 2014


It sounds ridiculous to say I can't believe I'm writing in here again because my mom relapsing is always a possibility. However, I still can't believe we are here again. Two weeks into her hospital stay, I'm deciding to start her blog again. I think in some weird way it helps me, but I'm hoping in some way it helps others. Where do I pick up...

Up until December 2013, she was doing rather well in her recovery. The year prior to that she was diagnosed with Meniere's Disease (MD), in addition to the Polymyositis and Peripheral Neuropathy. She had some setbacks in therapy due to the MD, because at times it is debilitating. So she was not walking with the walker anymore, but still able to function otherwise.

My mom had to be admitted to the hospital at Methodist Willowbrook December 2013 for stomach/abdominal pain. Turned out she had to have her gallbladder removed, no way around it. We were very worried about the anesthesia, but she seemed to come through the surgery like a champ. Way better than any of us expected. She was there about a week and then discharged to come home. A week goes by and then two, she just seemed to be getting weaker. She started telling us that she just felt so weak and we really thought she just needed time to recuperate from the surgery. We kept telling her your going to be okay, you just need time and rest.

Over the next six, yes six months my mom was in and out of the hospital/doctors office. The last time was the end of May, she was very dehydrated and malnourished. After a swallow exam they deemed her fine to have soft foods, so insisted she eat but she wouldn't. She was already showing signs of not comprehending things. She would say she said something that she hadn't or say something and completely forget a moment later she had said it. We tried to get the hospital to send her to a continued care facility, but they said she was in the right state of mind to make the decision and of course she chose to go home.

Fast forward a long two months, the same thing continued. Hardly eating, hardly drinking, alot of sleeping, alot of medications and increasing unawareness. My parents 35 anniversary came and went. My mom started not recognizing us at all and was having alot of swelling in her arm. We knew something was wrong. My dad called a cab, then he and my brother got her ready to go. The taxi took her to the Methodist Willowbrook ER and she was not kept waiting long before they took her back. I met my mom and dad there, she was still fairly responsive and in/out of cognitive. The ER doctor came and asked my mom what she was there for and she said Polymyositis. So he asked her again, why are you here? She answered “Polymyositis”. The doctor said, “If you don’t tell me why you’re here I’m going to have to leave”. In true Diane fashion, she said “Then leave”. The doctor did not realize she was giving the best answers she could and that she had not been completely coherent. Once we explained this to nurses, the doctor came back quickly. He did a thorough evaluation and found that she was experiencing severe Meniere’s episodes (turns out she wasn’t on the right medication to prevent the attacks), she had two infections, was malnourished, dehydrated, had acute delirium and was in a Polymyositis flare. How could she get to such a state I’m sure you are wondering. As I mentioned in the beginning, this started MONTHS ago and no one could see what was happening. This didn’t happen over night and even my mom didn’t realize how bad she was and why. Needless to say she was admitted to the hospital that night at about 3:00am. And in regular hospital style it was a small ordeal because of the lift situation, which I’m not going to get on a rant about right now. Once she got some medication for the Meniere’s and pain she actually got a little rest, but she was still doing a lot of shaking/rocking and delirium.

August 13th Wednesday

This was her first official day in the hospital. Since she is on three antibiotics and since her veins are hard to find (partly from having small veins/partly from dehydration) they are putting a PICC line in and doing some CAT scans. My brother stayed with her and said she did great. She slept a lot that day as we expected. I notified the Social Worker my mom was not to go to Kindred (formerly Triumph) Hospital, an LTAC (Long-term Acute Care) facility.  Keep up with the acronyms people. My mom was there when she was sick before and I can testify that that hospital is terrible. We didn’t blame her for not wanted to go back and wanted to respect her wishes.

August 14th Thursday
It doesn’t seem like much is getting done. She is sleeping a lot and seems to have slipped away. She’s not really communicating with us. The social worker informs me that my mom has to go to a Skilled Nursing facility because basically she is not sick enough to go to an LTAC hospital.

August 15th Friday
Even though my mom was very dehydrated the doctor did not want to put her on fluids because of the swelling in her arm. Today he finally ordered her to be on fluids. The said she can have soft mechanical foods, but she is not eating. She is still delirious. The doctor is saying she is safe to move to another facility and put in orders for her to go to a skilled nursing facility. We are not happy at all about this, but my dad and I go visit some places. We found one that was nice and that we knew my mom would like. We notified the social worker and waited for details regarding the transfer.

August 16th and 17th Saturday and Sunday
This weekend she is not responsive, she does not know who we are and seems to be getting worse. The nurse mentioned that her kidneys were being monitored, probably because of the infection, but again we did not know anything about there being a concern.

August 18th Monday
Today we are really worried about my mom. I tried calling the nurse for an update, but couldn’t reach her. I called the charge nurse, who took my phone number and said she would have her call me. That was 9:30am, I waited until 1:00 and took of work the rest of the day. In the meantime I get a call from the social worker about orders fill in doctor wrote over the weekend for my mom to go to Park Manor. I mean seriously? I asked why he was writing order at all? He is not even her primary care physician. The social worker’s only explanation was that she have had this as an ongoing problem and that they have tried to address it. Once I arrived at the hospital at 1:30 I asked for the charge nurse. I asked her if she felt four hours was an unreasonable amount of time to expect a phone call from nurse? Considering my mom can’t communicate or move. Of course she said no and apologized, but it wasn’t sincere. You can always tell when people are sincere and when they are going through the motions. We changed nurses and I stayed for awhile. I spent the rest of the afternoon trying to reach her Doctors office to find out about some disability paperwork he was supposed to give us and about the status of my mom’s care. You know questions like why she was not yet responding, what was going on with her kidneys and were any other tests planned? I found out he was in training all day, as well as his staff. He finally calls back and says he thinks if she gets a feeding tube she will improved and asks what do I think. I think they should have put it in when she was admitted, but I’m not a doctor. So the doctor showed up around 7:00pm while the nurse was putting the NG tube in. I arrived back while they were putting it in. It was hard to watch my mom and my dad. She really doesn’t know what is going on and she was very child-like. We are just waiting and hoping for some improvement.

August 19th Tuesday
Today I get a call from Methodist to confirm that we will allow my mom to be transferred to Grace Care Cypress. Again, although we do not feel that is in good condition to be moved we have to agree. At about 3:30pm we find out she can no longer go to Grace Care because she has an NG tube and needs to go to an LTAC hospital. We informed the hospital she would not be moving that day, that we needed a little time to check LTAC hospitals and find out which ones her doctor has privileges at.

August 20th Wednesday
Jacob started kindergarten today. I was really sad my couldn't see it.

The social worked informed us that even though her doctor has privileges at other LTAC hospitals, he only goes to Kindred Tomball. The one place my mom or us want her to go. Besides the issue of the hospital, her doctor has not been keeping us informed and we really do not know what more they are doing to help her. We decided to have her go to another LTAC hospital and see a new doctor, which has been a long time coming. We spend all evening visiting hospitals to find a decent one. We agreed on Methodist St. Catherine’s in Katy.

August 21st Thursday
I contact the social worker to let her know where we would like my mom to be moved. Reminding them again that my dad or I must be present before she can be moved. She sends my mom’s clinical notes over the Methodist St. Catherine’s for review and to confirm they had a bed. They did have a bed, but denied the transfer based on her clinical notes. Because my mom has Medicare, LTAC hospitals requires a certain time frame for treatment of certain things in order for them to take you. Example: You have an NG tube, your doctors orders need to say you will need it for 25-29 days (depending on the LTAC hospital) for them to take you. Anything less is not considered long-term care, so you have to go to a Skilled Nursing Facility. Catch 22 is most Skilled Nursing Facilities will not take you with an NG tube and you wouldn’t want to go to the ones that do. So basically we were screwed. The doctor wouldn’t write the orders that she would need it longer. At this point I asked the social worker how was it she was going to be able to go to Kindred? She said because my mom’s doctor talked to the director and got her approved for a “short stay”. Is your head spinning yet? While all this was going on they scheduled my mom for an MRI on Friday to check for any abnormalities in the brain.

August 22nd Friday
I contacted the social worker to let her know they could send my mom to Kindred Tomball, like we had a choice. She was very happy and called Kindred for an evaluation. Around noon took my mom for an MRI, but were unable to do it and needed to schedule an open MRI (because we didn’t already know that was going to happen). Then they took her for an EEG of her brain. About 1:00pm my dad calls the doctor to find out what is going on. The doctor tells him my mom will be staying at Methodist until Monday because she is not stable and needs to have the open MRI done. At 4:30 I get an email from the case manager saying the transfer is approved, that the doctor is on his way to in the transfer order and that they will wait for us to arrive to transfer her.


At this point my dad and I conference call with the case manager who is not helpful at all. She basically said anything outside of scheduling she knew nothing about and it was not her problem. About that time the doctor showed up. He got on the phone mumbled a few things and as my dad was about to respond the case manager says "Oh I'm sorry the doctor just walked off. Now what would you like to do?" I said "What do you mean? What would we like to do? Ask the doctor who is right there.". The case managers responds "Sorry he just left". I was so mad. I finally said "Fine you want someone to make a decision, she can stay at Methodist until Monday".

August 23rd and 24th Saturday and Sunday
Saturday was my brother's birthday. We tried to make it as normal as possible.

My dad stayed at the hospital most of the day. The doctor doesn't come on the weekends, so it's always a fill in. The fill in doctor was actually great. He took the time to talk with my dad, answer questions and look over my mom's records. He found that my mom's white blood count was down to 7. Which means bad. He ordered her two blood transfusions. He also advised my dad that my mom WAS NOT STABLE TO TRANSFER and that he would recommend refusing a transfer, but that he was in no way telling us what to do. In the meantime, the case manager was trying to get my mom transferred. My dad said no, the doctor said she is staying until Monday. The case manager then proceeded to contact the doctor to get order and was told no by the doctor.

I'm too tired to keep writing right now. Sorry if some of this doesn't make sense or seems like rambling, I'm trying to condense everything as much as possible. The ridiculousness just goes on. I'll finish tomorrow and then I will keep this updated everyday.

Thursday, March 1, 2012

Progress is slow, but progress none the less.

Sorry this so far and few in between. As most of you know I've been dabbling in some other things. Mom is doing good. She still has bouts with the neuropathy and has progressed in her recovery. She is not yet walking on her own, BUT those muscles (that she lost use of) take a long time build up! I think she is doing great, even though a normal person might think she moves slowly to me she moves pretty darn good. She is able to get up and walk a little with the walker. It is a conscious effort and struggle, but she can do it. She is not quite independent, but she'll get there and I know she can't wait. She always says she feels like it's going to slow, but to go from having no muscle to where she is now in 1 year is amazing by anyone standards. This is my mom and dad with Jacob last Halloween. They got to go trick-or-treating with him and we had a very nice family holiday season, nothing compared to 2010. Thanks for following her story and I will continue post occasionally with her progress.

I also want to say thank you again to all our family and friends. We had a great support system during that time. I only wish that others who have been as unfortunate as my mom had the same.

Friday, July 29, 2011

Walking Tall

I have some shocking news. My mom called today, she said "I have some good news. I walked today." I am still suprised. Thank you all for keeping up with her story and for letting us share. Sorry for not keeping up with the in between updates. Your support is much appreciated. Hope you all are doing well or making progress!

Monday, April 4, 2011


As you all know the benefit is this coming Saturday April 9th. My mom will be well enough to make it to the benefit. We do not know what time and it won't be all day, but as soon as I know I will post it. We hope to see you all there :)