Therapies Going Well

Don is responding very well to Physical, Occupational and Speech Therapy.  I have not seen a social worker yet, so on Monday I will find someone who can give me an idea as to how long they think it will take before he is discharged.  On July 17 he is scheduled for an MRI at Moffitt, and on the 18th he will have blood work, see a neurologist and his oncologist, Dr. Weber.  Hopefully, shortly after that, we can go home.  I think he will get better faster if he has friends and family around.  Like his son says, we are on an island, alone with no support.  We have made wonderful friends here who will do just about anything to help, but it's not like old friends.

I have someone lined up to come pick up the coach and drive us home.  I have a rehab facility lined up to admit him if he still needs it, and I have a campground to stay at for the remainder of the summer.

On Tuesday I went to the hospital to report the neurologist I had an issue with.  I saw a patient advocate in the Risk Management Dept.  She was appalled and suggested I report it to the Watson Clinic, the doctors' organization he works for.  I reported it to a patient advocate there and they agreed it was totally uncalled for and it would definitely go to the board.

In Rehab Facility

Don was admitted into the rehab unit yesterday.  I picked one that allows dogs to visit.  When he was discharged from the hospital, he needed 2 people to move him.  He had his evaluation this morning before I got there.  I spoke with the physical therapist and he said he needed just one assist.  When I got to his room he was sitting up in a chair.  He was able to transfer to the bed by himself, the therapist had taught him how.  He was a little frustrated because he only got that short time with him.  Getting admitted on a Saturday was a little rough since not much goes on with therapy over the week end and he gets a little impatient since he is so frustrated.  He said its like his hand and leg can't hear what his brain is asking them to do.  Visiting with the dog was really good for both of them.  Bruno got right up on the bed and laid down with him.

Tomorrow I have to go to the hospital to get a form giving me permission to get his medical records, go back to the Rehab, get it signed and back to the hospital to get the records, including the CD with his MRI and CT Scan, then to Moffitt.  Luckily the hospital and rehab are close together.  Then I wait to hear from the oncologist, Dr. Weber.

Doctor Skuabble.

Don's physical abilities got worse today, but his confusion got better.  The neurologist (Dr. Campbell) insists it was a stroke and the oncologist (Dr. Weber) wants to be sure since he has seen this before with melanoma.  Let's face it, a second opinion is always good.  The neurologist does not want to call the oncologist, says "I don't chase doctors, they need to call me."  So Dr. Weber tried to call him and he was told that Dr. Campbell said he could talk to the doctor on duty, which he did, but he still wanted to talk to the neurologist personally.  He called and left messages, paged him, nothing.  This is not a common cold we're talking about.  So I spoke to the unit director, gave her Dr. Weber's cell phone number and asked her why Dr. Campbell was not returning the call.  She said he would after he was done his rounds at 5:00. it was 4:55.  So she brought the number to the nurse practitioner.  Derek & I were on our way out.  At 5:06 I get a call from Don's phone.  It was Dr. Campbell asking me what was up with Dr. Weber, he's been harassing him, paging him while he was seeing patients, it had to stop.  After about 3 minutes of ranting & raving I told him there was no reason why he should be going up one side of me and up the other for this, I didn't do it.  He said he wasn't, that it was about setting boundaries and he needed to set the record straight.  He must have gone through the same statements 3 times.  I broke down and cried and asked him why he was doing this do a family member who was under lots of stress already, he said it was about setting boundaries.  I asked him twice to PLEASE call Dr. Weber, he said he would after he was done his rounds.  I wish I would have thought of it, I would have told him instead of wasting 7 minutes harping on it with me, he could have called Dr. Weber.  At 6:00 I got a personal call from Dr. Weber asking me to go to the radiology dept. and get a copy of Don's MRI and CT Scan on CD and bring it to Moffitt on Monday morning.  I called the hospital and they said I can't get it until he gets discharged.  "Oh, but maybe if you ask the nurse, she can get it".  You know I'm going to the top with this.  There was absolutely no need of this.  Unfortunately tomorrow is Saturday so I may not be able to get anything done.  But I'm not dropping it.   Thanks for letting me vent.

Update

Things are a little better but his memory is shot, his left hand is uncoordinated and he has lost his peripheral vision in his left eye.  The neurologist said it was a regular stroke and not a melanoma tumor causing it.  His fever is going up and down so they are doing a blood culture to see if there is an infection, unfortunately that takes 3 days.  He is finding and bed extremely uncomfortable and can't wait to come home.  He's been asking about the blood test every couple hours and they have to remind him it takes 3 days.  They are planning physical and occupational therapy.  Will keep you posted.

He was very happy to see his son.

Totally Unexpected

Yesterday afternoon Don got a bad headache.  He NEVER gets headaches.  Once in a while he'll get something that lasts about 5 mins.  He went to lay down, about 15 minutes later he came out to call his doctor to see if he could take aspirin for the headache.  (His doc wants him to call before taking anything).  As I watched him try to do that, I could see there was something definitely wrong.  I was concerned that he might have had a stroke, so I took the phone and told the nurse his symptoms.  She preferred having us go to Moffitt but didn't want to have us take 45 minutes to get to medical attention so she had us go to the emergency room in Lakeland, 10 mins. away.  They admitted him, gave him an ultrasound, didn't see any hemoraging or tumors but could see the weakness on the left side.  The headache was behind the right eye.  This morning they took him for an MRI but he was combative when they tried to put the helmet on him, definitely not like Don.  I went with him for the second try, he made it half way.  The machine is very noisy and he still had this bad headache, when they took him out he was in a panic.  When he has these done at Moffitt he's wearing headphones and doesn't have a headache.  All he had here were ear plugs.  They got enough to confirm it was a stroke.

Tomorrow they will do a CT scan with contrast which should determine whether it was a regular stroke or one caused by the melanoma.   Will let you know what happens.

His son Derek is flying down tomorrow, I'm sure he'll be happy to see him. 

Progress

I'm almost scared to say this, but I think they are finally onto something.  My last post stated how well he was feeling on just 2 of medication A.  After a week the doctor increased it to 3.  By the time we saw him yesterday, and nausea, fatigue, having to force himself to eat, etc. was back.  Very discouraging.  Like the doctor said, they are going to have to tweak this to suit his body.  He put him back on 2 of Medication A and started him on Medication B.  So far so good, he has energy today, actually woke up hungry, had TWO peanut butter toast without batting an eyelash.  This is only day 2 on his new regimen but its looking hopeful.  He has to call the doctor Monday to report in, if all is well he sees him again in 2 weeks and gets scanned 4 weeks after that to see if the medication is working.  If its working he goes on an 8 week cycle which means we could go home for a while.  I hate to even think that far ahead.  I know I need to stay positive but for now I am going to take it one step at a time.

Again, thank you all for your prayers and positive energy.



We Might Finally Be Getting Someshere!

Don has been taking 1 pill twice a day since my last post and he is doing better than he has in 2-3 months, his appetite is coming back, he doesn't sleep all the time, etc.  I was pleased to hear that the doctor said today that he should increase the dosage to 3 pills a day rather than 4 pills a day like originally planned.  Just a very slow increase.  He may not be able to take the entire dose, but that doesn't mean it won't work.  He sees the doctor on Friday.  Now we have to take care of the boredom.  He wants to call the golf course to see if they have any scrambles early in the morning since there is no one left here to play golf with.

Another Try

Three days on the new meds and Don was totally exhausted again and having dry heaves.  He called the doctor's office on Friday and he told him to stop the meds and go in on Wednesday for blood work and to see him.  His blood work looked great so this is what he is trying.  The new meds schedule was to take 2 of medication A twice a day and 1 of medication B once a day.  Now he is going to try easing him into the proper doses.  He started on Thursday taking 1 of medication A twice a day and he is to call the office on Monday.  If he can tolerate that, then he is to go to 2 of medication A twice a day for a week, go for more blood work and a doctor's visit.  If all is good, he will take Medication B every other day, and after a week, take it every day.  Lets hope this works.  Again, thank you all for your prayers and sending all that good energy.