Relief

Sam was doing really well today. In fact she seemed back to herself, where she had been a few weeks ago, before all the problems started. She even seemed to have a bit more insight than usual. She had a cardiologist appointment at Mt. Sinai, but when we got there, apparently they didn't have her down for today and the doctor was still on vacation. There was obviously a mix-up, but they have rescheduled for next monday morning. Sam seemed content to have gotten a little bit of fresh air and a bit of different scenery. She said some amazing things to me while we were waiting for her transport back. At one point she looked at me and said "I have a lot of respect for you- you've stuck with me through all this" and then she started to tear-up. Her sentence shows quite an awareness on many different levels. I too teared up and then gave her a nice big hug and kiss.

Mt. Sinai and Dr. Edelman to the Rescue

After seeing Sam's mental state deteriorate last week and no one at Park Terrace responding, I contacted Sam's Primary Care Physician, for help and advice. Dr. Edelman immediately responded to my inquiries and even had a long conversation with me to determine the best way to proceed in order to help Sam in her current situation. The outcome was Sam being sent to the ER at Mt. Sinai due to a change in her mental state and ultimately being admitted to the hospital last Friday night (actually at @2 am Saturday morning to be exact). Dr. Edelman put Sam's "team" in place and immediately the neurologist changed her medications. They did a number of tests, including a new EEG and determined that Sam does not need any seizure medications. It is now 5 days later and Sam is much, much better. She was just discharged back to Park Terrace this evening. There are still some unresolved questions related to her fainting spell and her heart, but Sam has a Cardiologist appointment on Friday (thanks again to her primary care physician) and so hopefully that too can be resolved. I also told the social worker at Park Terrace today just how disturbed I was by the fact that there has not been a neurologist available at Park Terrace for the past 3 weeks, and the fact that everybody acknowledged that there was a serious problem with Sam but nobody did anything. I received an apology from her and was also told that I would be hearing from their head administrator so that they can assure me that this will never happen again.

Regression

Since Sunday, Sam has had fever, but it has decreased over the last few days. She has been able to participate in her therapy classes, and no longer needs to be put into bed in the middle of the day which is the good news. The bad news is she has really regressed with the change in medication, and now repeats words continuously and can't help herself. She doesn't do this all the time, but it happens a lot. I feel like her awareness level has changed for the worse as well but am not 100 % sure. Many people at the facility are away on vacation and it is a hard time to get answers . With that said, "Sam" still comes through and can talk about all sorts of things, but it is truly a very hard moment.

Music to My Ears

Since I have just come down with a bad cold, I won't be visiting Sam today out at Park Terrace. I did call this morning however to see how she was doing and the person who answered the phone at the nursing station said, "oh....she's right here in front of me, ...Sam- Marcie's on the phone". I then heard Sam loudly say..."Hi Marcie!". That was true music to my ears. I could tell right away that although Sam might be tired, she was back to herself. I also spoke with Sam on the phone and afterwards felt like at least today, I could rest well knowing that Sam is getting back on the right track.

Adjustments

The Doctors changed Sam's medication yesterday morning and by last night Sam finally seemed to be getting back to herself. She is still overly tired, but otherwise doing much better. Hopefully over the next few days and week she will get back to where she was before her most recent hospital visit and adjust fully to the new antiseizure medication.

Difficult Times

Sam has had a very difficult week. The antiseizure medication is very strong and Sam has had a bad reaction to it. This weekend the doctor cut the medication in half, and it is now at the lowest it can be while still protecting Sam. After many discussions with various doctors at the facility and outside the facility it appears that this medication is the safest, with the least side effects. Apparently all antiseizure medication is harsh. I have been told that it can take a couple of weeks for the body to adjust to it. It is sedative, so Sam has been both physically exhausted and also dizzy. They have been monitoring her blood pressure and heart rate, since she is generally not feeling well. She is only participating in Therapy classes a little bit in the mornings and then they need to put her into bed. It is tough to watch Sam go through this struggle, especially after her doing so well and having her first home visit. I do have faith that Sam will get through this, but it is very hard to bear witness.

A Bit of a Scare

On Wednesday morning, the facility told me that Sam had passed out in physical therapy and after they saw how low her blood pressure was, decided she needed to go to the Emergency Room to get checked out. When i got there, Sam's blood pressure was almost back to normal, but her heart rate apparently was very low, and that was much more of a concern than the blood pressure. They therefore decided to admit her to the Hospital, for observation. She only returned to Park Terrace late last night, after numerous tests of all sorts turned-up nothing and they said she was fine. The cardiologist said it could have been any combination of factors, but was not an acute problem. He also said that any of her medications could have caused the drop in her heart rate and blood pressure. He felt (like I) that she is on way too much meds. Also, the EEG test that they did showed a "potential" for brain seizures, and therefore they recommended yet another medication for her protection. Early next week the facility doctors will discuss Sam's meds. and hopefully reduce them. Also, today at the facility, Sam told me she was feeling dizzy. I was very concerned of course and had them take her blood pressure and heart rate, which all was fine (i think a little low for Sam though). Later that day, she got her period and I realized that this of course could not have helped matters and certainly could make any girl feel dizzy, especially if you were on a ton of medications. After some Tylenol, Sam's dizziness went away as did her stomach cramps. I will have Sam see her proper physician outside of the facility for a full evaluation, although it is a complicated situation with her in the Rehab./Nursing facility, under various different Doctors' care.

Back At The Facility

The last two nights back at the facility, Sam has been doing really well. Although I don't think her memory has improved much, it is her awareness that seems to be getting stronger. Again, Sam is very insightful, On Monday evening, she took my hands in hers, looked me straight in the eyes and said "you are very important to me.....now more than ever" and then she started to tear-up a bit. "Wow"- I thought to myself, she understands her situation. She also asked me on Monday night if I was going to do the same thing tomorrow...I asked her what she meant and when she couldn't explain herself, I said "do you mean my visiting you?" and she said "yes". I told her that on Tuesday evenings I have many errands to run and I normally don't have the chance to visit. She looked at me with a bit of confusion and concern in her eyes and said, "well, you have to come visit me", as if... what could I possibily be thinking. Of course, with that statement and look in her eyes, I really had no choice but to visit Sam last night. I was very glad I did, since Sam was stringing together words and making sentences that were somewhat unusual for her. For instance, when she was changing her clothes and getting ready for bed, she was struggling with her shirt and she asked me..."Marcie, can you help me with this?". That is unusual. Also, right before I was leaving, she looked at me and said "you have a very good night....and then she used the nickname that we reserved only for each other in private moments" I could tell she was very pleased with herself for using this name for me, and was waiting for my response. I was so thrilled that she could remember the nickname, and use it properly, that I gave her a big hug good night and told her just how amazing she is.

Sam's First Weekend Home

Sam spent July 31st-August 2nd at home and even had a small birthday gathering with colleagues/friends from work. Overall it was truly wonderful for Sam to be home and I know she enjoyed the time. She did not recognize her home in Yonkers, but did recognize all of her things in the house. We had only moved into the house 5 months prior to her getting ill, so her most recent memories 6-12 months beforehand seem to be the most unclear. There were moments on Friday night where I personally did not know how I was going to handle the situation, and I was never so happy as to see the nurse I had hired arrive on Saturday morning, but by the time Sunday rolled around, I thought....okay, this will be manageable. It was certainly a learning experience, since Sam needs to be kept on schedule with her food, medicine and bathroom training. Sam did recognize her cats, but both she and the cats were quite cautious of each other. Sam enjoyed receiving her guests on Saturday, opening her presents and reading her cards. I know she recognized almost everyone who came to visit. Again, I think she had the hardest time in knowing people that she had only worked with for a short period of time. I do think Sam became a bit overwhelmed by the time the second group of visitors arrived and so we (the nurse and I) just let Sam sleep on the couch for the latter half of her party. On Sunday I had Sam log onto her computer and I opened -up for her the Rachel Maddow site and downloaded video clips for her to watch. She enjoyed being on the computer very much and was laughing out loud at some of the clips. Wendy and Aileen helped Sam and I on both ends of her visit which consisted of both physical and emotional assistance. On the way back to the facility, in the car, Sam told me that she was confused and didn't understand what was happening. I explained the situation to her as best I could and she seemed okay afterwards. She was happy to be back at the facility and immediately recognized her roommate. I have planned to take her home again this weekend. I would say that it is very good for Sam to be home, a little less so for me, since all the time must be devoted to Sam's needs. I will probably alternate weekends soon, but at the moment it is hard not to bring Sam home. I can also say that at the Facility, Sam looks great in comparison to those around her and knowing how much progress she has made; at home however the comparison is much harder to make.