Sept 13, 2012 Update on Doctors Visits

Well today is going much better than yesterday.  Yesterday Dad was suffering from severe eye pain, probably due to the erythromycin medication they are putting in his eye.  I talked with the nurse and doctor last night and requested that they discontinue the use of that cream and it is causing the severe pain.  Dad said he was doing much better today and his whole attitude is better when he is not in that pain.

One of the interesting things yesterday, is I asked the nurse that provides the medication to see what she was putting is Dad's eye.  I was right outside Dad's room where she had a cart that she pulls medication and provides it to Dad.  I was surprised to see that Dad's medication is not in a single container, but just one of 50 medications in the drawer.  The nurse would pick up various bags with descriptions on them and throw them back in when they were the wrong one.  She was able to show me the Lacri Lube and erythromycin, but could not find the Refresh.  She found a bottle and showed it to me, but I pointed out that it had someone else's name on it.  She stated they must have just run out and she would have to get more.  I suspect they had not been giving the Refresh, but I have nothing to base it on.

I did have a good meeting with the Dietician at Rosewood and we worked on Dad's diet.  They are going to puree his lunch and dinner, but not his breakfast and he will get scrambled eggs on a regular basis for breakfast.  I asked Dad how it went this morning and he said they pureed his eggs this morning.  I talked to the dining room supervisor today at lunch about breakfast and she said she would get it straightened out and then they served Dad a pureed soup that was milk based, even though his lunch slip said no milk products.  Dad had taken a couple of spoonfuls and really liked the soup, so he wasn't crazy about it when I had them take it away.  They did replace it with Chicken Noodle soup, which he said was ok.  I told Dad he needs to speak up when they mess up his order, but I don't think he will and I am worried that they will continue to need corrections.

I watched Dad do Occupational Therapy both yesterday and today.  He gets OT five times per week and PT six times per week.  He seems to really enjoy it and they are excellent with him.  Today I was in there when they had three patients and I can tell you attitude is a big part of the healing process and Dad has a great attitude.  They gave Dad a three pound bar and had him lift it over his head 10 times for three reps, then he had to extended his arms holding the bar for 10 times with three reps.  The nurse then asked him to do the same but curls and she had to go help a patient get into bed and said she would be right back.  Well Dad finished his reps and then he decides to make up his own exercise, combining the lifting motion over his head and then extending it straight out.  He completed three reps before the therapist came back.  They have him standing and taking steps, then holding a ball and twisting at his waist.  He was a little unsteady at first, but quickly was able to get and maintain his balance.

Dad is still sleeping about 18 hours a day and would sleep more if he is not going to PT/OT and meals.  I was talking to him about trying to play 5 straight or creating a card for Nicole on my laptop and he said he wanted to try the card for Nicole.  By the time I got my computer out and powered up, he was sleeping, so I let him sleep. 

I just heard from Pam, the Social Activities Director that the hygienist that Dad was suppose to see does not take medicare patients like she told me they did.  She said they were looking into other options for Dad including bringing in the person John had lined up and they would pay for it.  When she asked the cost, she gasped, so I am not sure what is going to happen.  She was going to talk to her manager and let me know.  Jim, after John got someone lined up, when I went to tell the nurse that we were bringing in someone, she asked 'why aren't you using our hygienist?'  I told her that you were told they didn't have one and she said they did.  Well, it looks like they might not.

Today we saw Dr Heidari, he said Dads kidney function is down to 18% and his platelet count is down to 45.  He was very concerned about both.  He asked what was the current plan for the pet scan and we said that Dr Trang wanted to clear up the osteomyelitis before proceeding with chemo, so we were not sure it made sense to move forward with the pet scan.  He reiterated his concern regarding chemo, but then we discussed the gallium scan and pet scan.  Both are very safe for Dad and should not impact his kidneys.  He said a MRI with contrast would be the best test for Dad to see if the osteomyelitis is gone, but that anything with contrast would be too hard on Dad's kidneys so the gallium test is the safest and best test given Dad's condition.  He also felt that if we wanted to do both test that Dad should tolerate them both well and that we wouldn't need to wait any specific time between tests.  He also said that he believes Dad will need at least another 4 weeks for antibiotics and probably longer.  And even when Dad's test come back clear, that he will still recommend that Dad be given antibiotics if  he decides to move forward with any chemo treatments.

Dad's gallium scan is scheduled for Oct 1st at 10 am with follow up appointments at the 2nd and 3rd, but we do not have any specific times as of yet.

Dr Heidari also felt that we should have Dr Saike see Dad sooner rather than later as his kidney function is low plus his legs and abdomen are swollen.  Dad says his breathing is not currently impacted, but this would be something to watch for over the next week.  Tom called Dr Saike's office and his first available appointment is Oct 18th.  Tom is working with his office to get that date moved up.  John said that he would be willing to take Dad to the appointments and Tom thought that was a good idea.

Dr Heidari changed Dad's medication back to how they were before moving him to Rosewood or the Heart Hospital.  As of tonight he back on Daptomyacin every 48 hours and Zosyn every 6 hours.  He was on Zosyn 3.75mg and will now be on the 2.25mg.  Dr Heidari felt the Zyvox is not a good long term antibiotic and since Dad has been having further eye problems that the Zyvox might be a contributing factor.  Tom asked if giving Dad the Zosyn and Dapto over 4 hours was better or made no difference and Dr Heidari said that it was a better way to administer the medication, but that it is not good for a patient to be tied to a bed for so long.  That is better if Dad can get up and move around more and get some physical activity.

I am heading home tomorrow (Friday) about 1:00 pm and will be back on Oct 1st unless I am needed sooner.  Jim, I changed the phone in Dad's room to the one he had at his house, so if you call him he can put it on the speaker and should be able to hear you well.  We tried it with Cate and it worked well.  Cate is planning on coming down around Oct 16th and staying until the morning of the 21st (this is still tentative).  Tom will be leaving on Oct 12th for 33 days or until Nov 15th.  Jim if you can give me an idea when you might be coming down, I will try and fill in any missing gaps and John, I hope you don't mind covering the weekends during this time period.  John will take Dad to any Dr Nguyen and Dr Saike appointments and Tom will take Dad to Dr Heidari's appointments.  I do not know if either has plans for Dr Trang's appointments.  Dr Heidari is every week, and the others are every couple of weeks or as needed.  Oh and Tom has made an appointment for Dad for an ophthalmologist, Dr Ling.  This is a Dr that Dad used to go to.  He did not like the eye doctor that we found for him and so we are switching and going to try Dr Ling.

I am sure I am missing something, but it is late and tomorrow is another day.

Love to all, Bill