As I was getting ready to go back to the hospital, Dr Schroeder’s assistant called to let me know I could bring her in to the office today. I told her that since she didn’t get back to me yesterday I had to get her back to TMC, where she belonged, and that in the shape she was in there was no way I could have gotten her to his office anyway, thank you very much. I also suggested he pop by room 851 if he felt so inclined. And mentioned that the fact that she didn’t fall and break her hip while at home was a freaking miracle.

I can’t believe how quick her decline was over the course of the last two days and then how quickly she bounced back again. Wow. I walked in to her room shortly before noon and she looked great again. Apparently, there was some swelling in the brain, and her sodium and potassium levels were quite low. They changed a few meds around and added some new ones and boom presto chango. The occupational therapist came in right when I did and was able to have her sit up largely on her own and get her up and walking with the walker. She recommends 1-2 weeks in re-hab until she is able to do basic self care things on her own and get steadier on her feet. She put her in a chair and had her sit up and have her lunch of grilled cheese sandwich and potato chips. Mom took one bite and said: “I ordered a grilled cheese because I thought they couldn’t F*@k it up. They did.” Yup, getting back to herself. Not sure when she will be transferred to rehab, but whatever, I have a feeling they won’t make the same stupid mistakes twice. I think everyone is aware there was a major screw-up and the crazy daughter is watching them closely.

While she was eating, a nurse from pre-surgery stopped in and asked how things have been. I gave her the big picture and she said oh my god who on earth released her- who signed the discharge papers and who was the nurse. When I told her she said she was surprised at the nurse but not so much the doctor. She also said it broke her heart that they sent her home like that and that it basically makes everyone look bad not to mention putting mom at risk. She said she noted in the chart that she had an unsteady gait before the surgery and couldn’t believe it didn’t come up after the surgery. No shit.

To make a long story longer, this may start to go right after all, and we are thrilled to see some progress, finally. While lying in bed, she is doing breathing exercises that were taught to her by a physical therapist friend who shall remain nameless. We love and appreciate you. You know who you are. She doesn’t want pneumonia, and realizes that she can help prevent that. So she is breathing in slowly through her nose to a count of ten and out slowly through pursed lips. That really stuck with her. She is also trying to strengthen her left hand. She seemed so out of it yesterday but did retain a few things…..

Clearly my mom was discharged too soon. Any rational human being could see it was sketchy. Hmmmm. 81 years old. Brain surgery. Fall risk. Yeah, let’s send her home with her daughter who is not a medical professional of any sort. And let’s skip physical and occupational therapy, AND rehab. Let’s also not give any decent instructions or in home care. She can’t sit up, stand up or walk? No problem. What a disgrace. Modern medical care my ass!

So after watching her get weaker and more lethargic with every hour, not to mention the nausea, vomiting and lack of appetite, and with a couple of friends who are medical professionals, who were as horrified with the situation as I was, I finally called 911 (around8:30) and we went back to the ER…

Here are some of the things I learned:           If you don’t have someone looking out for you, you are screwed.                                     If you say you’d like to speak to a patient advocate, they pay attention.                         When you start to lose your cool, you scare them.                                                        This is not a popularity contest, if you’re angry, let someone or everyone know, they don’t want to be on your shit list.          Lack of sleep does bad things to your well being.                                                                 Contrary to what neurosurgeons think, they are not gods, nor are they perfect, and while they may be very good at surgery, they can be clueless, arrogant, inconsiderate asses.

At 3 a.m. she was ready to go to a room (851) and I went home for some sleep. As soon as I get a shower and some food I will head back and give updates.

On Sunday morning Dr Shroeder came and announced that he was releasing her. Today. To go home. As I said earlier, holy shit!  She will require 24/7 supervision for at least two weeks. So after I got her settled at home, I went home to pack. As mom said “pack? What do you have to pack?” I explained I need clothes and stuff kind of like I’m going on vacation without the change of scenery. Lol!

Between getting her home from the hospital and trying to spend some time with my daughter before she left on Monday morning, it was a stressful day for all concerned. We have been trying to eat together as much as possible but the nutrition values are questionable. Her friend Bob sat with her during the night so I could get some sleep. He just called me when she needed to use the restroom, which seemed quite often. I was lying in bed in the middle of the night trying to figure out how to fashion a voodoo doll with Dr Schroeder’s likeness. Don’t get me wrong, I appreciate his expertise and surgical skills, but his bedside manner and common sense are suspect. What kind of a whack job releases an 81 year old woman who had brain surgery after one day in the hospital to a person who has no medical/nursing knowledge or skills? Yes, I care and I love her and will do my very best to get her through this, but seriously, I am terrified of doing something wrong, or having her fall on my watch. She is still very unsteady on her feet and her left hand seems very weak and unable to grip the walker handle. She has very little appetite and sleeps a lot. This morning after two sips of the coffee I made her, she threw up. Not sure if it was my coffee or something more is going on. Again, I’m feeling pretty scared and really alone at times.

Wish us luck. We sure as hell are gonna need it.

After mom got to her room yesterday, she announced that she was not eating any more hospital food and that all she wanted was a bowl of albondigas soup from Molina’s Midway. Jenna and Rick raced over to pick it up. She took one spoonful and announced “the anticipation was greater than the reality”. Nothing tastes good. (The night before we all had Athens takeout-that, she was happy about!)

I was here at 6 a.m.  but the first doctor came a little before 9.  So I basically blew the one day I could have slept in. Still trying to catch up. The surgeon will come by at some point. I’m hoping they move her out of the observation unit and to a regular room today. At least I can help her to the restroom there. I swear the nurses and techs were so much better over there! The night shift here is definitely lacking. 45 minutes to get help with using the facilities is unconscionable!

The surgery went really well! It was definitely the best possible outcome. Her surgery took less than two hours. When they finally called me in to the recovery room, mom looked at me, lifted her left arm and said, “Look, it works again!” I whispered in her left ear and she said “I heard that. Everything works.” And just like that, it seemed like this nightmare is over. I have a feeling we may be jumping the gun with that conclusion-that it can’t be that simple-but she does seem like herself again. Of course, now we get to the dealing with cancer phase of this ordeal, which I am sure will present its own challenges, but it is definitely something.

They originally thought she would go to ICU at first, but decided that was unnecessary. They put her in an observation room and are discussing possibly releasing her tomorrow. This excites her  beyond belief. They also discussed sending her to a rehabilitation center, like HealthSouth, for occupational and physical therapy after releasing her from the hospital, but since the left side has come back so quickly, this may not happen. I have to admit this terrifies me! So………Her neurosurgeon makes rounds around 6a.m., so it’ll be another super early morning for me!

More updates tomorrow-

Last Friday we went to the VFW with some friends and listened to some outstanding music and devoured some pretty darn good fish fry. If someone would have told me then what this Friday would look like, I wouldn’t have believed it. Not in a million years.

My mom went to Europe for a month and got back on Saturday night. Immediately after seeing her, Tyler and I were alarmed. She looked like she had aged 10 years since she left. She seemed confused and unsteady on her feet. She  was repeating everything she was saying, she wasn’t listening well, and in the days to come, we noticed she wasn’t taking as much care in her appearance, she just wasn’t my mom. She also was not listening to me one little bit when I voiced my concern. Luckily she went to her water aerobics class on Wednesday and one of her friends, Louise Hastings (a big thank you to Louise!), noticed the changes and called her at home later and talked to her about it. And then the lightbulb went on.

On Wednesday night I got a phone call at 3:15 a.m. My mom thought maybe she had a stroke and asked me to come get her and take her to TMC. She didn’t want to call an ambulance and have them take her to UMC. No offense to UMC….First of all the staff in the ER is amazing. Dr. Brian Tenelshof could not have been more caring and kind. (He even gave me the code to get in the back entrance) He called me in to his office and showed me the cat scan and explained what was happening. Unfortunately it was not a stroke, it was two tumors. One is quite large and is causing pressure which was causing the symptoms, and a smaller one, which is a little deeper and is inoperable. He decided to keep her in the ER until Dr Schroeder was on call in neurosurgery, because he says he’s the best. After all the CT scans, and MRI’s and neurologists, it was determined that she has multicentric glioma. 98% of which are malignant. So, tomorrow morning she is having brain surgery. After that, she will probably go to a rehabilitation center for a week or two for physical and occupational therapy and radiation and possibly chemo as well. For now she is in room 866 with a beautiful view of a lovely courtyard and is being cared for by a team of sweet nurses and techs that are keeping her comfortable.

Jenna flew in from Texas this morning, Tyler cancelled his San Diego trip, we cancelled our Texas trip and we are circling the wagons and ready for this battle. Her attitude is fantastic! She is positive and optimistic and we are all trying to follow her lead and not get too scared or think about worst case scenarios, which I tend to do sometimes. She is not done here yet and we expect her to pull through with flying colors. Her hospital room has been like party central with friends and family coming and going from before 7 a.m until after 9 at night with countless phone calls and face time with family in Germany. She is definitely feeling the love.

On a side note…….While mom was in Germany, her brother Hans and she had a bit of a falling out. Which is a kind way of saying he was a total dick. As we were in the ER she said, Hans is gonna feel like shit now. (Which is actually questionable, but one can hope). I said boy you won’t stop at anything to get even and make a point. We both laughed like crazy. Now she decided to name the tumor Hans (she does hold a grudge), and he is being removed. Once and for all!

The outpouring of kind words, offers to help, positive thoughts and prayers from so many wonderful people in our lives has been amazing (even though most of my friends realize I’m not a prayer kind of person, I will take any prayers and positive energy you can send our way). You have no idea how much it means to all of us!