10-28-2010

Hello there, this is Stephanie.  Jarilyn gave me the info to put on my own updates since it is hard to know what to say.

Fist and foremost, I would like to say a HUGE thank you to everyone for your thoughts, prayers, phone calls, cards, food, everything !  The help and support has been amazing,,,,thank you so much.  Danny reads me the cards so it has been fun to share those with him. 

So, how is it all going?  Mostly it is the same.  The vision is still what it is.  I still have a big blot in my eye that is a white color with lost of spots around it (much like a migraine) and i still have blurry vision, not double, just not clear.  again, much like my migraines.  pretty much sucks, but i am super grateful i can see!  like i said, got to see Danny's face to see how cute he is when he drives me nuts.. besides, you really need to keep an eye on him...could you imagine what he would try to get away with if he knew i can not see anything?? yikes!!!

Physically (other than the eyes) i have no difficulties, other than i am exhausted most of the time.  i hope to start an exercise program next week to help with that.  i have been active to build my strength, but I must admit that i don't feel well when i get my head hot (you know that point in exercise when that happens) and i don't have clear instructions on what i can and cannot do because the doctor said not to exert myself but it is OK to exercise.  Really.... what does that mean?  Isn't the whole idea of exercise to exert yourself?  I met with the nutritonalist who gave me the specific questions to ask so i will have a better idea of what that means after my doctor appointment this week. 

I am having some memory issues, so the dog is getting use to being left outside, i have let the water run for long periods of time, and i still cannot find my new wool jacket i bought at the end of last season (I wore it once and have no clue where it went from there), but they don't even measure that for 6 months so i am not going to worry about it too much.  Danny is helping me by taking more responsibility in the mornings and we are finding ways to keep the important stuff straight.  for example, my dear friend Jane gave me pill boxes to keep my meds straight, Paul fills the boxes, and i have a calendar/folder where everything is written down so i don't mess up, or if i do they will know what i did.

I went to the neurologist last week, and got a couple of answers but not all of them.  i know i will have back most of the vision i am going to get back within 6 months, and then may get a little more during the next six months, but will have what i am going to get in the first year.  I also found out i have not just a hole in my heart, but a pucker.  the pucker allows blood to pool and that could cause clots.  plus i have a genetic blood disorder that can lead to clotting and exhaustion.  I will learn more about the blood thing on November 20 and will most definitely be sharing more so the Chases and Montplaisirs can get that checked out!  He did say eye exercises and therapy will not help but that i should try to read and use them as i want to and suggests i get pink glasses for the eye sensitivity.  so, if you want to send me an email that is great, but please use smaller words and more line breaks as it is really hard to read large groups of letters, and Danny cannot help me if the words are too big. 

I am going to a Neuro Opthimologist next week who will measure my sight loss and will be kind of a second opinion to what the neurologist said.

October 11th, 2010

Special thank you to everyone who brought over food this weekend. Danny is very excited about all of it!

Well, mom had another doctor's appointment today and it turns out she has shingles? It's like the old person's version of the chicken pox is what I have heard so far. The poor woman just can't catch a break. She has it on her shoulder and upper back. I didn't get to talk to her much because she was just walking out the door with dad to go pick up more pills. 

For those of you who don't know, mom had surgery on August 2nd to correct a bladder issue and had about 5 weeks off for that, then about a week after that, she was diagnosed with bronchitis and had to take 2 weeks off for that, then was at work for 3 days and went on her girls weekend (when she had the stroke) and then tried to work on Monday and Tuesday of the next week before they took her in and discovered the clot. She finally gets out of the damn hospital and now she gets shingles... I can't help but laugh. 

My only update from yesterday is that she had a good day. She was pretty tuckered out by the end of the day, but it was a good one. We had some visitors and we went to visit grandma and made her dinner, so that was nice.

I know that I ran into some of you at work today, but I just want to throw this out there again. Mom enjoys company. She is not supposed to be focusing her eyes, which doesn't leave a lot left, so please don't hesitate to stop by or give her a call sometime. :) She enjoys it!

October 9th, 2010

Spent the whole day with mom today. She is doing really well!

We didn't do much, but I definitely wore her out!
We went and got Scout groomed and now he looks like a girl... opps... Then got lunch at Don Pablos out in Roseville. Needless to say, she was craving it. She ate so much and wasn't nauseous at all! :)  It was really nice to see her feeling better!
After that she got a massage and then we went to get her nails done.
Mom's friend Jane is coming over tomorrow to talk to mom and dad about the medications. She is a nurse and actually understands all this stuff. She also brought mom some medication holders that she can actually read, so she was very excited!
That's it for now!

October 8th, 2010

Mom was released from the hospital yesterday and will be calling people for rides soon. We thought we had a solution for Danny to get to school, but it might not work out, so we may need help with that after all.

"I woke up with a headache today, but I am supposed to avoid taking abortive drugs (Advil, aspirin, etc..). They are drugs that you take after the headache starts. I only had to take one ibuprofen yesterday and haven't had to take any today. :)"   - Stephanie

She is going to try to get into a nutritionist sometime soon. She is not supposed to be eating anything with Vitamin K which is found in vegetables like broccoli, kale, cauliflower and fruits like avocados and kiwi. Just an FYI for those of you who offered to make food for the family.

Doctors told her to try not to focus to much, to try to relax her eyes as much as she can because she needs to let her brain do the work and if she strains her eyes too much it might hurt instead of help.

Her and dad went shopping today and bought stuff for her to see better. She bought a calendar/planner that is two 8.5x11 sheets of paper for one week. :) She got some felt tip markers too which are easier for her to see since they are thicker than pens.

I have talked to her a lot today and she has been in good spirits all day. I am glad, it has been a few weeks since she has giggled. :)    I will be going over there and spending most of the day with her tomorrow. We are going to run errands and get some stuff done that she won't usually ask for like a haircut and maybe one for the dog too.....

October 6th

Mom is very tired today. She is going to try to sleep, so maybe not too many visitors? Thanks guys!

Went up there yesterday. She is caring and stubborn as many of you know. She was lying in her bed most of the night worrying about her other friends and hoping they were ok.

Nothing new on the doctor front. They took her off of sodium chloride (to hydrate her) and Zolphran (anti-nasea) at the same time, and then she was nauseous, so we don't know if it is because she is not drinking enough water or if she needs that medication again.
She got a lot of migraines last night though. I think she said that she had roughly 5 of them yesterday. Anyone who suffers from migraines knows that 5 in one day would be horrible. They do think that it might be a genetic thing, so mom is having me go to a neurologist to see if there is any similarities between us and maybe a cure?
They are looking to release her tomorrow as for now, but we will see how it goes for the next 24 hours. Keep sending happy thoughts!

Original Letter

Here is the update that my dad sent out on Friday night to our family.

This is an update from her husband. I have been with her since the ER, and this has been tough for her.  Basically the staff at Regions has been wonderful.  She has had many doctors looking into this.  What they’ve concluded so far is that she has had a stroke caused by a clot.  They know what area of the brain the stroke permanently damaged.  They still have not determined where the clot came from.  For the most part her arteries are clear .  There are some tiny traces of plaque, but none that would be considered a problem. They analyzed the heart suspecting she may have also had a heart attack , but found no evidence that had happened.  Yes they have found a hole in her heart, but nearly 20% of humans have that condition. They have considered it as a possible factor, but they are not putting a lot of emphasis on that.  No one knows for sure when the stroke started to occur.  The onset of the pain was Thursday morning the 23^rd  – it came on fast and was very intense, but had the characteristics of migraines she’s had in the past( some loss of vision, nausea, aches in the neck, etc.)  She was down in spirits because this happened on one of her 4 day “scrapbook vacations”. She went to her chiropractor for some adjustments, which provided some relief but not for long.  The remark she made to me was that she’s had migraines this intense, but this one was different because it was not going away.  On her last visit to the chiropractor, she was told everything was in alignment.  She actually called the chiropractor on Friday Oct 1^st  to let him know she had a stroke.  The chiropractor said he knew something was up, but regretted he did not push her to get in to a specialist. She also tried her best weapon against migraines – a deep tissue massage from our old neighbor Leroy.  This was ineffective, and made her and I realize this was very different from her normal migraines. She sought the advice of a general doctor because if it was something bigger , she would need a referral from him to see a specialist.  She had told me that she was being given medicine from an IV, but this did nothing- the pain was still intense.  He prescribed 2 other medicines to try.  If she had no relief in 24-48 hours, then it would be time for an MRI. That first night of taking the medicine caused the pain to dramatically increase.  I rubbed her neck and shoulder areas before I left for work.  It provided some, but little relief. We decided to call the doctor ASAP.  Her MRI was scheduled for Friday, but an opening occurred on Thursday afternoon. From that they saw there was evidence of a clot. They had determined that it was not a “fresh” clot (4-6hrs old) because there wouldn’t be evidence on the MRI.  Rather they determined it was an “older “ one that had caused the problem. From what we gathered from the doctors was they really didn’t know when it happened, or how long this had been going on.  We were in the ER for 9 hours because of the unavailability of a room for her. By now she had a lot of tests done, and the neurologists would see the results in the morning.  She had been in and out of the room so many times on Friday that the neurologist was having a hard time pinning her down.  He was successful on the 3^rd try.  He was very detailed on his diagnosis. He stated there were a few possibilities.  It could have been caused by the medicine used for hormone replacement therapy. It could have been caused  by the chiropractor adjusting the neck- he said when you “pop” the vertebrae there is a chance some deposits may break away and cause a clot.  It could have been caused by the hole in her heart. All he said was that he could not determine where the clot formed, but would try to do the best he could to eliminate these variables in order to prevent their chance of causing a future clot.  He was optimist about her recovery because of her age.  Why they are being thorough with Stephanie is because she shouldn’t be having a clot at her age (the normal causes aren’t present).  She has been tough through all of this but she is fearful about the visual damage.  There is a small amount of bleeding near the area `that has been damaged, but that could be caused by the brain trying to repair the damage, meaning it may be trying to finding a new route t6o correct the visual problems- it has been determined it is not anything dangerous so far, but tests results won’t be in for another week.  One thing to note is that there IS some memory problems.  For example, she has been slow in answering questions that require accessing memory.  For the most part she gets the right answer , it just takes her a little longer than normal to figure it.The occupational therapist has given her some tests and has determined there is no damage to the motor functions (movement, balance, coordination, muscles, etc.) – that was an extremely good thing. As far as the memory and eyesight, she is confident she will recover anything lost but if not , they have many methods to help the brain use different routes to get things back to normal.  It is not a 100% guarantee, but she is optimistic.  The brain/ body has many ways to repair damage.  My father had a stroke a couple of years ago with the same results and even at 83 he got everything back in 2 weeks, so we are cautiously optimistic, but realize it isn’tgoing to be an instant fix. It may take some hard work. What she has asked me and a few others to do is to give her space emotionally.  She doesn’t like it when a doctor/ nurse comes in and there is a lot of people in the room.  She feels she needs answers to her questions, because only she has been talking to all the doctors.  She is having a very hard time dealing with this in such a short time. She is scared that her eyesight isn’t coming back. I’m not saying this to be mean, it is just she has trouble processing information if there are a lot of people in the room asking questions, looking at her as if something is wrong, or taking her or the doctors words the wrong way.  What we take for granted is that we have no problem whizzing through questions and answers.  Stephanie  needs time to get things processed, not because of the stroke , but just to figure out what she needs to do /accept.  As for me , I interject something she may be forgetting to tell the doctor, but only after she has gotten answer.  So if you are in the room when the doctor comes in,ask her if she wants you to leave while she talks to the doctor, then she’ll tell people what he told her, rather than have a lot of people tell what they think they heard.  Like I said before, I’m not trying to be mean , its just that Stephanie needs time to deal with this in her own way.  Right now she is only thinking what to do if she doesn’t recover.  She’s worried about,how to get Danny to school, or if she will be able to go to work or do her job, so please if you want to help, keep saying positive things to her or maybe offer to help her around the house with things she won’t be able to do.  She is tough and I know she’ll get through this but its going to take time.  Love, Paul

Information

Here are the MANY numbers that you can use to get a hold of us.

Mom is at Regions Hospital in the south wing on the 10th floor. 

Room:   S10402

Phone:   651-254-8902

Cell:      651-235-8415

Jari:       651-399-5729

Paul:      651-428-7028

House:   651-251-2888

If you would like to send cards, our house address is 

180 Sterling St N

Maplewood, MN 55119

We will need help with food, household chores and rides for Danny to karate/boy scouts/doctors appts. 

October 4th, 2010 4:30pm

The group of doctors just came in. They are the same ones that have been will her since Thursday when she was admitted the first time.

There are two different types of strokes. One is a clot and one is a bleed. Mom suffered from a clot stroke, so they are starting her on blood thinners tonight. They can be risky if not watched or treated correctly, so that is why they are keeping her a few days until her levels even out. They are going to start her on coumadin and levorax. Here are the descriptions so that you don't have to google them too.

Coumadin:

Also known as warfarin, this medication is used to prevent strokes in people who suffer from atrial fibrillation, people who suffer blood clotting disorders, and people who havemechanical heart valves. Coumadin can cause serious bleeding. To avoid this, people who take this medication must have routine blood testing to monitor their INR, or International Normalized Ratio. This is an international measure of coagulation which attributes a value of 1.0 to people with a normal ability to clot. As the INR increases, it reflects that a person is less likely to form blood clots. Patients with atrial fibrillation must maintain an INR of 2-3 in order to effectively decrease their risk of stroke.

Coumadin works by decreasing the amount of vitamin K available for use in the body, which in turn reduces the efficiency of blood clot formation by the body. This is why you should monitor your intake of foods that are rich in vitamin K. Consuming too much of these foods can prevent Coumadin from working properly and may leave you temporarily at a high risk of stroke. Some foods with high vitamin K content include spinach, lettuce, alfalfa sprouts, asparagus, broccoli, cauliflower, and cabbage. Doctors recommend that you eat the same amounts of these food items every day in order to maintain a steady level of vitamin K in your body. This will both ensure that Coumadin works properly, and that you will have a low risk of dangerous bleeding while you take Coumadin.

What to watch out for: By far the most common side effect of Coumadin is abnormal and sometimes profuse bleeding. Often the abnormal bleeding can occur inside the eye, and in the intestines. Because of this, people who take Coumadin must monitor stool color and seek medical attention if stools become black or tarry-appearing. Of course, bleeding and easy bruising can occur anywhere in the body.

Lovenox

Lovenox, also called enoxaparin, is a form of heparin called fractionated heparin. Lovenox does not require monitoring of its blood levels and it can be injected intramuscularly. People with chronic kidney disease should not use Lovenox as poor kidney function makes Lovenox accumulate in the blood. The side effects of Lovenox include skin irritation at the site of injection and nausea.

What to watch out for: Rarely people develop an allergic reaction to Lovenox and develop a rash. If severe, the reaction can cause swelling on the hands and lips, and difficulty breathing. If you develop any of these symptoms while on Lovenox you should go to an emergency room. For further symptoms (bleeding) caused by abnormal reactions to Lovenox please refer to the “what to watch out for” section under heparin (above.)

They are keeping her on Coumadin long term and Lovenox for short term. The Lovenox will be in shot form to her abdomen twice a day until her levels even out and then she will stop it and only be on Coumadin.

She can read from facebook on her phone if she covers one eye. I can't tell if she actually wants updates or if she is just proving to herself that she can do it. We all know how stubborn the damn woman is.

October 4th, 2010 3:30pm

We just got admitted back into Regions hospital and she is in room 10402 if you want to visit.

She is very nauseous today. It hit her real hard on Saturday night when she was supposed to be discharged. The doctor on call sent her home anyways, thinking that she could manage it with medication at home. Another doctor had her admitted today, because she was very dehydrated and he did not agree with the previous course of action. The two doctors couldn't agree on a course of medication, so long story short they had to call in a third doctor as a 'tie breaker' to help determine the best course of action would be for her.

Either way, they are going to start her on a new medication regimen and so she will be here for a few days.

She is on Zophran and Sodium Chloride and she looks much better than just a few hours ago. I will try to keep this updated as much as possible. Please leave comments or questions and I will try to answer them as best as I can.