We’re in Seattle, Washington

8/13/15   

Well, must be time for an update, I’ve gotten lots of calls and emails asking about Lorraine’s condition.  So I’ll try to get something down here for everyone to know what is happening and how she is doing. 

First, the doctors haven’t been able to determine what caused her stroke.  Like I said last time, this stroke was caused by a blood clot but she has been on blood thinning medicine since her stroke in March.  Plus her two aneurysms have been repaired/plugged and they were considered to be a probably cause of her prior two strokes. 

They have run lots of tests, CT and MRI scans to attempt to find the cause.  The latest suggestion is a PFO (I think that is the correct term) was found in her heart.  I was told most everyone is born with a hole between the two sides of their heart but in most people, this hole closes by their teen years.  But 20 – 25% of people still have this hole and it allows blood that normally would go to their lungs to re-enter the normal, oxygen rich blood stream.  Their suggestion is she might have blood clots that formed in her legs or somewhere and normally they would be routed to her lungs where the clot would be captured and absorbed.  But with the PFO, the blood clot could move through the chambers of the heart without being filtered thought her lungs.  This would allow the clot to travel to her brain where it would become lodged in one of her arteries.  They said it’s a very slim chance but don’t have any other ideas of something more probable.   I don’t doubt this but it seems like you have to find the haystack before you can begin looking for the needle. 

Ok, will put that aside for now as they are still looking at causes.  I’ll go with the PFO idea but they don’t think it is a big enough risk factor to do surgery to close the hole.  I’ve sort of pushed this issue to a back burner for now but I will pursue it with doctors somewhere down the line. 

Another issue that came up was her chest CT scan showed a mass in the middle of her chest.  Now what?  I asked what the plan was to follow up on this issue and they asked if she had other chest x-rays before.  Lorraine has been put under for one reason or another 16 times so the answer to that question was a big YES.  I gave them times and places and they were to check and see what they could find in previous exposures.  Turns out they found the same mass in a MRI in 2000 and another back in the ‘90s.  Best guess at this time is it may just be a small section that remains after she had her thyroid removed back when.  Whew, another one to put on the back burner until later. 

Now for her actual condition.  Last update I said she had her feeding tube put in place.  Without going into too much detail, this is a tube that is inserted into her nostril and threaded into her stomach.  Then they attach a liquid container of something to it and it is controlled into her stomach.  All this because she has been unable to swallow without some of it going down the wrong pipe and causing her to choke and/or cough.  If the food/liquid gets into her lungs she could develop pneumonia which could be a lift threating condition, especially for her now. 

The speech therapist had to preform a “swallowing test” he administers where he has her attempt to eat/swallow different consistencies of liquid.  Lorraine had trouble so they wanted the feeding tube and still wouldn’t allow her any food or drink by mouth except for a very small sip of water from a sponge on the end of a stick, about the size of a toothbrush.  Even with that small amount, sometimes she would still have trouble and it could cause her to cough. 

The day shift nurse inserted the feeding tube before he went home at 7 and they had to have a portable x-ray machine come by to make sure it was in her stomach and not in her lung.  Now this is something I don’t think I would like and for sure Lorraine didn’t either.  She was constantly trying to pull it out, saying it hurt and asking me to take it out.  Broke my heart to stop her and tell her no. 

That night I woke up about an hour after I laid down and saw where she had pulled the tube out about 8”.  I got the night shift nurse and informed her and she reinserted the tube, not pleasant.  She also put a glove on Lorraine’s hand, about like a boxing glove.  This was to keep her from being able to grab the tube.  But about 2:00 am the nurse came in to check on her and found she had removed the tube completely.  Somehow Lorraine had managed to get her hand out of the glove and grab the tube. 

They had to reinsert the tube because they were giving her her meds through it.  Lorraine fought it pretty hard, I even had to help hold her hand to allow them to work on her.  Finally they got it in place and got the glove back on then tied it to the side of the bed.  Lorraine didn’t fight that restriction TOO bad but sure didn’t like it.  She must have asked me 20 times to remove it so she could scratch her nose.  Again, broke my heart to tell her no and not untie her.  And once again, they had to have the portable x-ray check it out before they could give her meds through it. 

Next morning I did untie the restraints but kept her glove on in the morning.  By the afternoon I was taking her glove off while I was at her bedside which was most of the time.  She did attempt to pull the tube but soon gave that up as I was there to stop her every time.  But it was nice that she didn’t continue trying to pull it out, wasn’t as heart breaking for me either.  But we did put the glove and restraint on that night and even then she was able to pull the glove off during the night.  What an escape artist!

I was given the ok to continue with this small sips of water even after the feeding tube was in place.  And she has been getting better with this, in fact, I talked to the nurse and doctors yesterday and told them I thought she was ready to eat real food.  They wanted the speech therapist to do another swallow test and if she did well, they would consider allowing her to eat. 

I happened to catch the therapist at the nurses desk in the morning and asked for a time on his schedule, he is busy.  He agreed to see her in an hour, good deal.  But just as he was getting set up, he got called away and didn’t come by for 3 hours.  By now its been way over three days since Lorraine has had anything to eat or drink.  Her mouth was dry and she was hungry even thought she was getting some food into her stomach via the feeding tube.  But she did pass the swallow test and the therapist sent a note to the doctors to that effect. 

He also told me the doctors didn’t think she was going to pass the test and were considering putting a tube directly into her stomach, another operation for her that I would just as soon avoid if possible.  And besides, I would want to wait a longer period before I would allow them to do that.  But that will not be happening now as she is able to eat, yea.  .

The doctors did agree to allow her to eat some, they have what they call “thick water”, applesauce and yogurt that I could help her to eat.  But they didn’t even start feeding her through the tube until the afternoon, something about making sure she didn’t have any major problems with it.  But finally she was able to get food into her stomach and wasn’t as hungry.  Three and a half days without any food and very little water, damn that’s a tough way to lose weight. 

After she passed the test, the doctors did agree to let her have a dinner delivered.  It was some chicken thing ran through a blender, pureed and formed into some sort of dry patty.  Lorraine wasn’t as hungry but did eat about 1/4 of it, most of the applesauce and all of the yogurt.  I would have thought she would eat more but guess the stuff from the tube had filled her up. 

Wednesday night she had a fairly good night.  I did put her glove on but didn’t tie it down and she promised not to pull the tube out.  I woke up a few times and she had not attempted to pull it out even though once again she managed to free herself from the glove somehow.  She had a good night’s sleep, finally. 

Lorraine had been complaining of a headache, even in the emergency room here on Sunday.  The doctors don’t like to give a stroke patient anything that would mask them having more issues so they didn’t give her anything too strong.  By Wednesday it was so bad she was crying almost continuously.  Every time someone would ask her to put a number to her pain she would hold up five fingers.  By Wednesday, I figured out she was actually trying to show 10 fingers but couldn’t move her left arm/hand.  I finally saw one of the neurologist walking by and called her into Lorraine’s room and showed her how bad it was.  She agreed to give her a one time dose of something strong and if it helped, would put her on a maintenance dose. 

Boy, what a difference.  She has settled down even though she still says her pain level is at 5.  In fact, I’ve asked them to not give her the full dose during the day as she was sleeping too much, I thought.  But at night I wanted her to have enough to allow her to fall into a good, deep sleep.  So that’s where we are on her pain control.

She is still not moving her left arm or leg, in fact, she pretty much ignores anything on her left side.  She will not follow the doctor or nurse’s finger when they move it from right to left, she stops somewhere straight ahead.  Her eyes don’t appear to be focused, her left eye doesn’t look like it used to.  But she had passed the short eye test she was given and the doctors don’t seem to be too concerned yet. 

She has asked me numerous times when I was taking her home to our rig.  I’ve told her that she can’t go home yet and after this hospital stay she will have to go to a recovery place.  But she continues to ask anyway.  And a few times she has tried to get out of bed and go to the bathroom, of course all she can do is swing her leg out, the rest just doesn’t follow.  I can’t tell if she is disorientated or just what is going on.  In most everything else, she seems to know what is going on, what happened and where we are. 

She got her breakfast this morning but didn’t care for it, it was again something pureed and pressed into a patty.  She also had the feeding tube going on all night so she wasn’t too hungry.  The doctors said they would just feed her at night with the tube and let her eat all she could during the day.  But this afternoon, they decided she was eating good enough that they won’t even be feeding her through the tube at all, may even remove it tomorrow depending on how much she can eat, yea.  They are however, still giving her the meds through the tube as they don’t know if she can swallow pills yet. 

This morning Lorraine was very emotional and cried about most everything.  She also was scared when I when down to the car to get a clean shirt, when I came back she was crying and asking for me.  She said she thought I had left her.  This is the first time she’s been doing that although she has cried over the severe headache she had a couple of days ago. 

I mentioned it to her nurse today and she said it might be from a new medication the doctors have put her on, started yesterday.  No one mentioned this to me and I found out it is an anti-depressant but it can cause mood swings for the first couple of weeks.  I intend to find out more about this in the morning when the team makes their rounds. 

We’ve had lots of different folks come through to check on her during the night time and during the day too.  Today in walks this young girl who introduced herself as a psychologist or something.  She said the doctors wanted her to evaluate Lorraine and asked if she could as her some questions. 

Lorraine can’t speak too well so the gal asked what I term as leading questions.  She asked if she was sad, felt guilty, depressed and such type questions.  But when she asked her if she felt suicidal I stopped her and told her that was enough.  I didn’t want anyone coming in her giving her negative thoughts.  The gal got a bit snippy and said the doctors had placed an order for her to do this evaluation.  I told her to change this line of questioning or I would have her leave and she could call the doctors and explain why.  She said she would go to a different set of questions and only asked three more.  Guess what, she didn’t even shake my hand when she left, made me feel bad –not.

Later I saw one of the neurologist walking down the hallway and stopped her to discuss this and ask if it had anything to do with the anti-depressant medication.  I told her I didn’t want anything put in Lorraine's record about her being depressed or such.  I told her she had gone through lots of medical issues and always fought her way through recovery and I fully expect to see the same this time.  She told me that “modern day medicine” requires these questions to be asked and I told her I was still old school and didn’t want it in her records.  I fully expect to loose this battle but that doesn’t mean I’ll go quietly. 

Lorraine had a physical therapist come by on Tuesday.  She managed to get Lorraine up and sitting on the side of her bed for a short while.  She also noticed that the joints on her left side were already showing signs of getting tight, she was having “drop foot” also.  She ordered up a special boot that Lorraine is supposed to wear for two hours on/two hours off.  It is to designed and fitted to hold her foot in an upright position, trying to teach her brain the correct position once again. 

The nurses have also had her sitting up in a chair for two hours yesterday and today.  They moves her onto a stretcher that folds into a chair so it’s pretty easy to get her upright.  She was in the chair when lunch came today and it was nice for her to eat sitting up vs laying down.  

The nurses here have been, for the most part, really nice, friendly and well trained.  I have only had a couple of times when I’ve had to discuss things with them and they are quite open to my input.  They check in on her regularly and do their job willing.  All in all, I am impressed with the place. 

I am started to research some skilled nursing homes in/near Bellingham for what will apparently be Lorraine’s next transfer.  If anyone has any input, good or bad, on places up there, please let me know.  I’ve talked with the neurologist that saw Lorraine in the Bellingham emergency room and with her family doctor in Ferndale for advice too.  But nothing would be as good as what someone who has been, or had family members, to one or more of these places. 

Our son, Rich, is flying down from Alaska tonight, will be here early in the morning.  Our daughter, Susy, is driving up from California starting early tomorrow morning.  Lorraine is really looking forward to seeing them but I know she will cry when she sees them. 

I had intended for this to be a short note but here it is bedtime and I haven’t got it posted yet.  I’ll get it out in the morning after I prove-read it.  Without Lorraine able to do her proof-reading, no telling what I’ll miss but this is it. 

Sorry about the length but I wanted to make sure I got most of this down on paper so I can review it with her at a later time. 

Thanks   Chuck

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