Memorial Day

"Dinner at 5pm, come at 4:30 if you can," mom told me when I called her early in the day.
"Juma, call mom and tell her we are running late." My request since it's now 4:45pm.
"I'm not calling her, you call her", Juma whined.
"Just call her and tell her Raina was delayed coming home from Bush Garden with a friend, it's out of her control, I would call her but I'm driving", I love using that one, it always works.
It worked.

Got to moms and she was all smiles. She had the hamburgers all made up and waiting to be cooked in two skillets. The crisp, colorful condiments were fresh on the platter waiting to decorate each burger. She had also made a hugh pot of her famous beef/chicken vegetable soup. There were pineapple upside down muffins set aside for desert along with the surprise chocolate covered strawberries she brought out after dinner.

All this from a woman still recovering from GBS. Amazing!

Mom has reduced her Neurotin to 900mg's. Her stomach pain increased so she might increase it. Her fingers and feet still tingle with pain.

But she is truly getting better in little baby steps. This dinner was a big move forward.
I can not tell you how much laughter and smiles we shared this day.

Jeanie

April 24,2009

My mom played tennis today. That was a big step forward.

She called me up yesterday and said she wanted to play tennis tommorow and to sign us up for and hour at the courts. I said "really, are your serious?" She said really. So we played doubles.

Her fingers hurt like normal but not too bad. Her balance is still off which prevented her from running but she hit the balls fine and served fine. Not as good as she use to but the point is she did it. She actually played almost a whole set of tennis.

She still does her pool walks and exercises five days a week and she thinks that is making her stronger.

overcoming a fear

This is Raina's essay she had to write to get into the AP programs in highschool.

My Christmas gift to myself was to confront my lingering fear of death.

My grandmother was in the hospital this past Christmas. I love my grandma so much. I have always thought that she was very healthy for a woman of her age. She plays tennis four days per week. She works full time at a company she started by herself over twenty years ago. We get together every Sunday for movies and cards. She is a big part of my life.

When I found out she was in the hospital with an uncommon disease and in a lot of pain, it freaked me out. I thought I was going to loose her forever and never be able to talk to her again. I wanted to see her so bad but I feared I would not be able to stand seeing her in that hospital bed all wrenched in pain. This really disturbed me. My mom kept asking me to go to the hospital and I kept finding excuses as to why I couldn’t. My mom sensed something was wrong so we talked about it. She explained how much it would mean to grandma if I paid her a visit. She said, “Your smile will warm her heart.”

I was nervous the next day when I went with my mother and visited with my grandma. She was in a lot of pain and it felt uncomfortable. I felt sad for her. I held her hand and she gave me the biggest smile. I know how much it meant to her.

Afterwards I realized my fears are much bigger when they are just thoughts in my head. Being in the hospital was not pleasant but I kept my grandmothers well being in my thoughts allowing my fears to take second place.



“Our deepest fear is not that we are inadequate, it’s that we are powerful beyond measure.” Marianne Williamson


What the quote means to me is that we aren’t afraid that we aren’t good enough or that we can’t do something, we are afraid of what we can do.

If we are powerful and achieve a lot, maybe it will push others away from us. Will others feel like they are not good enough and shy away? Or will they try to sabotage us because they are jealous. What we need to realize is our being great inspires others to shine their light too.

update

My moms symptoms seem to get worse if she gets stressed out. She has tried going back to work a few times and is now currently working but the side to that is that her legs and arms are weaker and in more pain. On top of that her hip is flaring up with something. She went to doctor and they took an x-ray, but all it did was show her hip as healthy. He said it may be bursitis.
Her balance is still off and walking is slow. She goes in pool for 30minutes four times per week.
Progress is not at all and frustration is high. They still have her on lots of drugs, one I know for sure is neurotin.

March 10th

The wedding shower for Nicole came and went. It was a success. The food was great, thanks Terry. The decorations were gorgeous, thanks mom, loved everything from the yellow rose napkin holders to the bridal dolls on each table. The games went well, thanks me, I had the most fun with the toilet paper brides and the "name Nicole's age picture game". The cake table was great thanks to the two Sharon's. Donna was a great "pull all the loose ends together" person. Nicole was a great bride-to-be.
The upside to all this is mom had much to think about. The downside is it stressed her out and stress causes the GBS to act out. The stress caused her hands and feet to hurt more and her stomach to flair up all over again. She even had major heartburn in the middle of the night that caused her to gag. It made her afraid she might have to go to the hospital again. Terry was there to calm her down and tell her she was not going to the hospital, that it was just the heartburn and suggest she sit up in the chair in the living room. Terry sat up with her till 3am. Mom dosed off and finally went back to bed.
Another strange symptom is her ear itches. I gave her my garlic/mullen ear oil and it helps a lot.
Mom realizes that doing too much makes her symptoms worse and she is taking it easy for now. It takes a lot of patience for her to take it easy as she is very use to keeping busy all day.

Jan 27, 2009

The space between blogs is getting wider. That means my mom is getting better. Bill got pneumonia and ended up in the hospital. Must be all the stress of mom being sick. After almost a week in the hospital he is back home. Tonight is his third night. Sun night he wheezed a good bit. Mom is getting restless. She talks about going back to work but does not have the energy to match the desire. We played cards Sun night at Donna's. Mom went to the mall to get her hair cut in the morning then over to Donna's house for cards and dinner. It was quite a full day for her. She was able to shuffle the card which was a big test. She is still getting PT. Life keeps moving at a fast pace, always changing, always evolving. Thank goodness it does....Jeanie

Jan 21, 2009

Mom had a few visitors from out of town the last week. Bill's daughter flew in to help then his grandson came with his wife for a quick visit. I came over today because Bill got sick in the middle of the night and had to go to the emergency room. He had pneumonia out of the blue. He was not sick yesterday, just really tired lately. Must be all the stress of my mom being sick.
Mom seems so much better, she even said she wished she could go back to work. She is walking without the walker already. She holds onto furniture and walls when she needs to. She is having some sciatica pain. The PT massaged her yesterday and that helped. The pain and numbness is still in her hands and feet so she increased the Nuerotin by 300mg today. We are definately on the road to recovery. Yeh!!....Jeanie

Jan 16, 2009

Spoke with mom on the phone, she said it is not a good day. She had PT(physical therapy) yesterday and she may of over done things. She did things like leg lifts, buttock lifts and side steps. Now her body is very sore, the nerves are acting up all over her body. She may break down and take an Advil. She is trying not to add anymore pills to her day yet I feel she needs to have relief here and there....Jeanie

Jan 14,2009

Three more days have gone by. My mom still feels the same but I see a difference. She is more engaged in life. Every day she focuses more on external things and less on the internal distress her body is still feeling. The pain is still there for sure. Two nights ago she had severe pain in her legs and feet for about 2 hours at about 10pm. She finally took a sleeping pill. Once her body rested the pain subsided. I believe she had over done it that day. This disease does not respond well to exhaustion. She gets tired very easy. I was surprised when I went to visit her and she said she had dyed her hair. She did it herself. That really was a big feat. She was exhaused but did not know why. She needs to remember the things that use to be easy, are not any more. Not for awhile anyway. Patience. Easier said than done.....Jeanie

Jan 11, 2009

Went to see mom tonight. It was almost like old days. She was lying on the couch and Donna and Mike were there. She looked good. Bill went to the airport to pick up his daughter. She will be there for the week which will really help them out. Mom is still in pain in her feet and hands. She is using the walker good now but her feet hurt a lot while walking. When Bill got back with Cindy, us girls sat around the living room and cut ribbon and talked about wedding ideas. My niece is getting married in March. It was nice being in moms house hanging out instead of the hospital. I'm glad she is home. She is glad too but she said she was a little nervous. Something about if she needs something she is not sure if she could get it. I am thinking she is afraid of a relapse. I ask her if it is nice not to have the ports in her arm and she said "Yes but it worries me because I don't want anyone looking for a vein again....Jeanie

Jan, 10, 2009

Mom came home Friday. Yeah!!! Donna went and picked her up with Bill around noon. She used the walker to get from the car into the house. She was even able to step up one small step. She's doing well with the walker. Later that day she got to go out on her lanai and sit by the pool with Frosty on her lap. Frosty is her aged-in dog years-Maltese doggie that missed her very much. Donna said "Frosty was beginning to wonder if mom was ever coming home".
That was yesterday. Today she spent a lot of time on the phone catching up with people. She got a visit from a nurse that mom said ask way too many silly questions. Do you know how many times she has had to say the same thing over and over. I think that keeps people sick. Sick of answering questions anyway.
I called her on my way to a drumming circle. I ask her if she wanted me to come over and massage her back. She said "no, its too far out of your way and besides Bill can massage it". Sometimes I am not sure if she is tired of all the activity of people coming by. So I decided to just see her tomorrow. I really wanted to come but I knew a friend was waiting for me to arrive. It's tough not knowing the inside of someones mind. If I was to guess I would say she wanted me to come....Jeanie

Jan 8, 2009

Mom didn't sleep well last night. Her legs hurt, maybe from so much walking with the walker. Her stomach is much better but her fingers and feet hurt more. Seems like the Neurontin helps with the stomach but hurts the extremities. She said she did not remember Jeremy being their Christmas day. We all visited the hospital Xmas. We wheeled mom into the waiting room so she could be with everyone at the same time. She was very groggy that day. She is not on any pain meds now, not even Advil. She said she doesn't want to add to what she is already taking. She is on Multi vitamin, blood pressure meds, Neurotin, ____.
She is going home tomorrow and very happy about that.....Jeanie

Jan 7, 2009

They are giving her a higher dose of Nerontin today. They are trying to get her off Dilaudid. Her stomach feels better but her hands and fingers are a little more sensitive than they were yesterday. Her appetite is back. She said the food was so good today; she sent compliments to the chef. The beef was seasoned very nicely and was very tender with yummy mash potatoes and gravy. Her back hurt. I spent some time massaging it. Her legs also got a massage. She has lost some tone on her legs but the muscles are standing by ready to take shape with a little exercise. Bill went with her on her walk this morning. She used the walker two more times latter in the day by herself. She said she felt strong when she went with Bill and felt confident to go on her own the other two times. Bill got the shower aides installed at home today. Getting her ready to go home. When I went in at 5pm he had a clean bag of laundry on his lap that he had got from her this morning, went home and washed it and already bringing it back this afternoon. That is love............Jeanie

Jan 6, 2009

Jan. 6th. My mom went from 10:00 pm last night until 11:00 am without Dilaudid. She got the Nerontin last night also. She ate a little this morning and did her exercises and walk a little bit. She then ate some lunch and was transported to North Collier. You would think they would have moved her faster since they were so urgent about getting her out of rehab. She then ate a little dinner. Said she didn’t like it but at 7:30 tonight still was pain free in her stomach. She was happy but nervous about the possibility of more pain. Hopefully we are on the way upwards.......Donna

Jan 5, 2009

Jan. 5. Well my mom did not get out of the hospital today. They will be moving her back to North Collier tomorrow. She has had nausea for 6 days and diarrhea for two days. She has eaten very little to none. Even smells bother her. Then last night she had severe abdominal pain again just like when she was admitted. They did an Ultrasound of her Abdomen which was ok and so they started her back on the Neurontin again. We had tried taking her off a lot of the medicines because she couldn't function. Plus they almost caused her to Overdose last week. She can't go into Glen View because of the pic line in her arm and she needs that for the Dilaudid that she is getting for the pain. I think at this point if they can get her stomach under control then she can go home. They also gave her protonics and tums. The Neurologist said that in his 15 years of practice he has seen 100 cases of GBS and none of them have had stomach problems. He is sure that that is what it is. I researched the whole thing on line last night for about 2 hours so I asked him a lot of questions today. He was pleased with the strength and movement in her hands and feet. She also got her knee reflexes back. She never lost her ankle reflexes which he said every one of his cases they had lost that reflex. We really like him but he said it will be a longggggggg process for her to get well. They also tried to move someone in her room again and we explained that she was in a private room and they said again that she wasn’t paying for it and we told them about the situation and they said they would go look at the chart. Why wasn’t that done ahead of time instead of coming in and harassing my mom. We also told them that we would gladly pay so that she wouldn’t be exposed to all kinds of diseases. What a nightmare. They told us they had to get her off the rehab floor......Donna

Jan 4, 2009

Jan. 4. Still nauseated but no diarrhea. Dr. Wisenthaller said antibiotic could cause nausea. Maybe take another look next week.
Left leg and arm numbness. Gave Dilaudid for the severe abdominal pain. No bowel movement but gas and belching. Ampicillin and Zophran and Ambience for sleep-slept 5-6hours. Tried to put another patient in the room today and we explained that it was a private room. They weren’t very nice about that.......Donna

Jan 3, 2009

Jan 3rd. My mom is worse. Now we’re wondering if that patient was contagious and she got something from her. They came in and started IV Magnesium and Sodium and wanted to get a stool sample again. Not sure why unless they did mess it up last night. Her BP is up again. No Thiamine today. Echocardiogram came back ok. More blood work. Knot in stomach, moaning, and diarrhea. Felt awful.

As a side note the hospital is dirty. Pee pad in wastebasket and poopy sheets left in room for 2 days. Toilet dirty and when asked to clean it she came in and I’m not sure what she cleaned but the poop in the toilet was still there. When told again they said they would get housekeeping. Not sure if it was ever done because mom had to go so bad that she couldn’t wait. Yellow gouk running down wall under medicine cabinet.

Jan 2, 2009

Jan. 2nd. Mom is very sick and now has diarrhea. We asked the nurse to call the doctor to see what was wrong. The doctor(Dr. Bendeck) was on the floor and didn’t bother to see my mom. The nurse paged her and she finally came up and said no one had told her my mom was sick. We reminded her about the nurse calling the day before about the antibiotic and she said “Oh right”. She said that she wanted to draw some blood and do a Heart Ultrasound and would change her antibiotic after consulting with Dr. Brown. Dr. Kelley came in and harassed my mom about not doing PT. What a joke. Like she wants to do leg lifts when she feels like vomiting. They did a stool culture but the nurses were arguing about it so I’m not sure it got done right. This is the 15th day and my mom has not had the same day nurse. No continuity whatsoever. Dr. Wiesenthaller(gastroenterologist) came in the said that the antibiotic could make her nauseous and then he got a call to O. R. and never came back. They gave my mom Ampicillin around 7:00pm. Dr. Baker came in and said that he would stop the Neurontin and just use Hydrocodone for pain control and order Lidocaine cream that she could apply 4 times a day. I asked about suddenly stopping the Neuronton because of side effects and he said it was ok that that was just for people who had been on it for a long time. I also asked about using Tens unit and Capsacian cream. He said that she might have this pain for some time and it may get worse before it gets better. My mom is very atypical because it’s more sensory than motor. I also left a message with Peg for Terry the Hospital Admin and she never called me back.......Donna

New Years Eve, New Years Day

Dec 31st. She is still having major nausea with pain in her stomach.

Jan. 1st. Mom didn’t take her Cymbalta thinking that was making her very sleepy. No doctors all day. We asked the nurse if it could be the antibiotic and to see if they could switch it. The nurse said the doctor did not want to switch it so my mom just refused it that night.

Dec 30, 2008

Dec. 30th. Mom started to have nausea and had trouble doing her rehab. She also had a metallic taste in her mouth. We met with the Case Worker and the PT and OT person. Of course, no doctors, and they said they couldn’t move her because Dr. Quintero was gone and that the doctor filling in for him couldn’t step on his toes and go above his head. We were concerned that the only reason they were keeping her another 5 days was that her doctor was gone so we wanted to talk to Dr. Baker. They paged him and he never called back. He finally came that night. They gave her some medicine for the nausea.

Dec 29, 2008

Dec. 29th . Well a lot has happened since Sunday. Now they say my mom has a Urinary Tract Infection and can't leave the hospital, not even to the Glen View who has a bed on hold for her. It is still a little crazy but thanks to Pat's daughter, who talked to the Hospital Admin(Terry), and then the director Suzanne Graziano, my mom is being attended to more and today we even got her in a private room. They have not put the pain patch back on but they did increase her Neurontin again. They started her on Leviquin. She had pain in her legs and hands yesterday so that is why they decided to increase it again. Today her hands and feet were better but she was very sleepy and a little loopy. We are still getting some miscommunication and that is driving us crazy. We’re suppose to be meeting with the staff tomorrow at 11:00 to see what they say about her condition. That is why I was surprised when Bill said that the doctor(Dr. Quintero) came in at 6:00 and said that she couldn't leave until at least beginning of next week. Why didn't he wait until the consult tomorrow with the rehab doctor and Neurologist???? Anyway, my sister is staying for another week and we are trying to stay at the hospital most of the day now so it is very tiring. I'm sorry I'm not returning phone calls and will try to do better now that my dad left today. My mom is still not up to visitors. She can't stay awake. My uncle just got here to today and my other uncle is coming on Thursday so they will go see her then. Keep the Prayers coming because my mom can definitely use them. She has been going through this for a month now. Dr. Roy came in to check mom for her breathing and told her that when she got out she should be evaluated for Sleep Apnea. He said they would check her over night for her oxygen level. We never did hear how that came out.

Dec 28, 2008

By Dec. 28th my mom was so out of it. She was hallucinating and grabbing for things that weren't there. She couldn't even stay awake for therapy. She had her medicine at 9:00 this morning and was so bad that my sister talked to the doctor about reducing her medicine. The doctor(Dr. Prenger), from the IPC group covering for Dr. Quintero, wouldn't even come see her. We tried to talk to the nurse(Kristin) but all she kept saying was that it was the medicine and that it would have to wear off. She was also not breathing right and we asked that someone take a look at that and she was trying to get out of bed saying she had to get to work. The nurse only said that she would keep an eye on my mom and then I kept persisting and another nurse(Mindy) showed the one nurse about an alarm on the bed they could put on. The whole thing is ridiculous. My sister and I were there for 9 hours today and the nurse only came in once and that is because I asked her to. Finally tonight when Bill came we started to leave and my sister forgot something and had to go back and Bill said a doctor(Dr. Kanard) had just been in so my sister went looking for him and we cornered him and told him our concerns. He said that he was just covering for another doctor but would review her chart. We must have gotten through to him because he walked in and took the pain medicine patch off of her arm. Then around 11:00 my mom called me and said that they had done and brain scan and it was ok. She was pretty coherent but slipped once and said something loopy and then corrected herself. So I hope that it was just all the medicine just catching up in her system. Boy was it ever scary. Mike was with us and he was even concerned. We are going to see if we can get her moved tomorrow to another facility. I'm shocked about the care she is being given. If my sister and I weren't there they would still be giving her the medicine and not watching her. They acted like they didn't care at all. The last thing she needs is a broken hip. I don't think that she should be in rehab at this point and that alone is a joke. They have her doing leg lifts and painting. We could do better than that at home. All her doctors are gone and people are covering for them. Pat K suggested along with Joanne to ask for the administrative person or the patient advocate. We will try that tomorrow. My sister is suppose to go home on Tuesday but doesn't know if she should. I can't believe this is happening to my mom. It's been a month now and I can't see the end anytime soon.

Dec 23, 2008

On Dec 23rd they did an Endoscopy and Colonoscopy that was completely normal. Starting on Christmas day she was kind of out of it. Sleepy and a little loopy. They have her at Naples Community on the rehab floor but they aren't doing anything. They have her so drugged up that she can't do much. And of course it being the holiday all her doctors are gone so we can't even talk to anyone. It's very stressful. It's hard to tell if the pain is letting up because she is on so much pain medicine. I can finally touch her legs and feet. Just not sure at this point. We had her moved from one room because we thought her roommate was contagious and they put her in another room and now that woman's family is all sick and coming in the room and that lady is having diarrhea in her pants. We can't win. We are trying to get her moved into a private room. They said they couldn’t put her in a private room without reverse isolation. Dr. Prenger wouldn’t do it and said that she could be exposed to anything.

Dec 17, 2008

They moved her out of ICU to Med/Surg floor on Wednesday, Dec. 17th. They are still giving her Dilaudid for pain, Neurontin, Protonics, and IV solutions. Her mouth and eye are slightly improving. This is the 4th day that she hasn’t had a bowel movement and they are suppose to give her another enema. This is day 27 and week 4 since this ordeal began.

Dec 9-

Went to Dr. Hanson's for a follow-up on Tuesday, Dec. 9th. He gave her different pain meds and drew some blood. By the time I got her home she didn’t know where she was or that she had been to the doctor. I called Dr. Hanson’s office and they told me to call 911. She was transported to North Collier and was admitted. They did an abdominal x-ray that just showed some bowel. They drew more blood and on Wednesday did a full body MRI and a Nerve Conduction test. The MRI was normal but the Nerve Conduction test had changed considerably. They moved her immediately to ICU Thursday morning, Dec. 11th. Now they wanted to do a Lumbar Puncture, which was done on Thursday. That showed them a high level of protein, which was indicated for Guillain Barre Syndrome. They started a port in her arm so they could give her medicine and draw blood easier. They gave her 5 bottles of Immunoglobulins. Her doctors were Dr. Justice/Rabbani, Dr. Jones/Hanson, Dr. Mark Brown, Dr. Wisen. She was complaining of knee pain so they did an Ultrasound and that was normal. They did an enema on the 13th.

Dec 3- Dec 9, 2008

Dr. Hanson called in some pain and sleeping medicines on Wednesday, Dec. 3rd. She went to see Dr. Hanson on Thursday, Dec. 4th and he still thought it was Ciguatera and told her all they could do was manage it and gave her Plavik and refills on her pain medicine. She continued to get worse and by Saturday, Dec. 6th she could barely walk. She was in extreme pain from head to toe. She called Dr. Hanson on Monday and he told her to call the Neurologist, which I did, and was told they couldn’t see her until January 15th. We kept her appt with Dr. Hanson for a follow-up on Tuesday, Dec. 9th.

Nov 27-Dec 3, 2008

On Thanksgiving night her abdomen started hurting and it got worse by Friday. Finally on Sunday, Nov. 30th she had Bill call 911. They took her to Naples Community Hospital and did a bunch of tests on her. A Nerve Conduction test, Chemical Treadmill, MRI of her neck, Ultrasound of her Abdomen, Scan of her liver and gallbladder, and tons of blood work. All of which were normal. They sent her home on Tuesday, Dec. 2nd with a diagnose of Ciguatera Fish Poisoning even though the Neurologist, Dr. Justice said no way. They told her to take Neurontin and Nexium which did nothing.

November 14-22, 2008

Mom, Terry, and I went on a cruise to the Mexican Riveria on Princess Cruise Line.The dates were November 14th – 22. Mom started experiencing numbness, tingling, and pain in her extremities on the plane and then really felt them on Sunday. On Monday, she called the chiropractor, Dr. Bohn,(because she thought it was her neck) and he couldn’t see her until Wednesday. She went on Wednesday and he adjusted her. It didn’t help so she called Dr. Hanson who couldn’t see her until Monday...........Donna

Dec 19, 2008

Friday, December 19th they moved her the NCH rehab floor. They said she would have 3 hours of rehab in the morning and afternoon and would be there about 10-12 days. On Dec. 20 Dr. Bell put her on a Fentanyl Patch for pain. On the 21st she was in so much stomach pain that they removed the patch and put a higher strength one on and gave her some Dilaudid. Her BP was low. She has had a lot of spikes in her BP.

Welcome

Welcome to our blog. We are on a journey. This is an unwelcome journey. We are not out of the darkness and into the light yet so we cannot see the benefits of why this all happened. We are hoping someday we will be there, some day soon.
For now we just want to have a place to share our journey with others so that maybe something we learn will help them. We also want to update those that are concerned for our mother. Our mother is Bonnie and she has been diagnosed with Guillain-Barre-Syndrome (GBS). We are her daughters, Terry, Donna and Jeanie. This is our journey.