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

Rosewood admission

Well Dad has been moved into Rosewood Skilled Nursing Facility today.  As I said, he is room 1301B with another gentlemen named Gil Navarro.  This is one of the toughest thing we have had to do, but we exhausted all the other options.  We hope Dad is able to get the help he needs to move into the Assisted Living apartments in a few short weeks.  Of course that will depend on how long he is on IV medication.  Dad has a couple of doctor appointments this next week, the first is on Tuesday at 1:40 with Dr Nguyen, the oncologist.  John would you please either work with Rosewood to get Dad to this appointment or re-schedule the appointment for a time that is more convenient for you?  The second is with Dr Heidari, the infectious disease specialist (the one in charge of Dad’s anti-biotics) on Thursday at 2:15.  Jim if you would work with John on this one, that would be great.

Unfortunately, moving Dad into Rosewood on a Saturday of a three day weekend didn’t make for a smooth transition.  They were short staffed and while the nurse came in and introduced herself, she said she would do an evaluation on him sometime before 11 PM, we did not see her before we left at 6:45.  We also did not have anyone to talk to about which specialist we would like Dad to see.  In a meeting today, Tom, John and I thought it would be best if Dad could see Dr Heidari, Infectious Disease; Dr Trang, ENT specialist; Dr Nguyen, Oncologist; and Dr Alexandrakis, Ophthalmologist.  There was no one to talk to, so John if you could work with Tom over the next day or so to get this taken care of, I would appreciate it.  If the doctor is not available until Tuesday, would either you or Jim please work to ensure this.  We have been told that Dad’s primary doctor has to be a doctor that will visit the facility, so we agreed to Dr Memen.  He will have to approve the specialist that we use for Dad and will probably mean a switch in medications.

Jim, would you contact Life Alert and discontinue the service. I have already stopped the newspaper and all of Dad’s mail is going to Tom and Marys.  I can get the internet, tv and phone shut off when I come back in a week or so, so Jim will not be without service while he is here.  Also, I believe all of Dad’s bills are being paid automatically, and I am working to understand the process that he has set up.  But if you see any unpaid bills, please let me know.  I just added Jose to auto-pay for the landscaping, in case he asked.

I am sure I am missing several important items, but hopefully I will remember before anyone misses a deadline. Deb and I are heading home tomorrow, but I plan on returning the week of Sept 10th and Deb will return when she can, hopefully in a month or so.  If we are needed before that, please let us know otherwise I will try and make regular trips down to help out with doctor appointments and to spend time with Dad.  I hope he makes new friends at Rosewood and I just become a nuisance, but either way l try and make regular trips down.  I would like to thank Tom, Mary, John and Ranae for all the support while we were here.  This was much harder than I thought it would be on me personally and it was great to have them here to share the load, grief, frustration that this process entailed.  Both Tom & Mary and John & Ranae went out of their way to help relieve the pressure during the last four weeks and I truly appreciate all they did as well.  I believe we worked very well as a team.  I want to also thank Deb for all of her support during this period.  I know she was getting pressure from work to return, but she never let on and was a tremendous support for me.  She is my rock, my counselor, therapist and best friend, and I would have been a bigger wreck without her by my side.  I am truly blessed.

Dad’s good days still outnumber his bad, so I have been blessed to spend this time with Dad.  His sense of humor is still very sharp and I only wished I would have captured more of his Dadisms.  Dad has taught me so much over the years and he continues to teach me how to live even when you are dealt a crappy hand.  Jim I know you will enjoy your time with Dad as much as I did.

Heart Hospital Wednesday Morning

Dad was asleep when I arrived.  He seemed comfortable.  His room does not have a bathroom and they had a portable one in the room.  He woke up shortly thereafter and asked for his hearing aid.  There was no battery in it and, after a quick search of the floor, we were back in business.

Dad is in good spirits.  I think the antibiotics are keeping the infection at bay.  I could hear the case worker speaking at the nurses' desk and she came in and got a little history.  It appears we should not have been so up front with them about the purpose of our stay being to get Dad into skilled nursing.  We weren't told any of this before we made this decision.  They have their own procedures and tests they want to do on Dad.  We did not think that would happen.  Most of the tests are just the usual blood, x-ray, and ct variety.

Anyway, the case worker came in and told me that Dad would be on antibiotics for 6-8 weeks and asked about his home health care.  She then told me that Dad would need skilled nursing and said we had a choice of where to take Dad.  I mentioned we had made arrangements for Rosewood and signed a paper to that effect.  The case worker then called over to Rosewood.  This is how it works, I guess.

Dr. Amin came in and said he was changing the antibiotic order.  He wanted to add Zyvoxx(?).  When I told him we were working with Dr. Hedari, he said he was changing the order because he wanted to confer with Dr. Kitt over at Memorial, but she was out of town.  I explained we had been seeing Hedari for a couple of weeks and if he could confer with him before adding the Zyvoxx I would appreciate.  He said he would.

Dad ate all his breakfast.  He was in good spirits.  I think having a goal and working toward it keeps him somewhat occupied.  That and feeling a little better.  It is a bit difficult seeing him so weak.  One of the side effects of the Zosyn is muscle weakness.  I'm hoping the transition to Rosewood will be smooth and once there he can get some physical therapy.  He was also due for an EPO shot today.  Nurse Matt was going to call over to Dr. Ngyun to get the dosage.

Upcoming Calendar

Here's a little collation of what I understand is the upcoming schedule:

Cate is coming to Bakersfield on Saturday, Sept. 1st and staying until early Tuesday the 4th,

Bill and Deb are tentatively scheduled to leave on the 31st of August, but Tom and I are good if they feel the need to get home earlier.

Tom and Mary are leaving for a few days off from September 4th - 8th

Jim is arriving on the evening of September 4th. 

John will stay with Dad and take him to Dr. Nguyen all day Tuesday Sepetember 4th

Other notes:

Tom is working on the Rosewood admission.  He and Debbie got the paperwork filled out in record time and are now waiting for it tomove through the bureaucracy.  We hope to have more informaiton in the afternoon.

Feel free to comment if I have the dates wrong.

The Rosewood Experience

I met with Tom, Mary, Bill, Debbie, and Dad at 11am for a tour of Rosewood Retirement home.  They had two apartments available and we looked at them both, then enjoyed lunch in the dining room.  Vannesa the Marketing Director is very competent.  Dad seemed a bit down, but the place is really nice.  There are a lot of activities and the people who live there control their own space and take part in meal planning, activity planning, and are generally a cheerful lot.  I think once Dad has a chance to experience it, he will do well. 

Rosewood is almost at capacity and so things may seem to be moving fast for him.  Personally, I think the approach Tom and Bill took with him is very good.  They are emphasing:

• That this is a rehabilation option that is NOT the hospital. 
• He will get to have his own place and yet be assisted. 
• This is a temporary arrangement. He can stay if he likes it or he can move back home when he gets stronger.

No decision was actually made.  He was going to speak to Bill about the financial arrangements and see if Rosewood can perform the medical tasks we need to have done.

From the Dr. Nguyen visit earlier today comes news that Hedari and Nguyen believe the fluid in Dad's abcomen IS becoming a problem and he will have it removed probably this week.  Bill says his breathing is being affected and Nguyen feels it's because the fluid is preventing his diaphragm from fully inflating his lungs.  Dad's red blood cells are increasing and we're hopeful this will help with his energy level.

Dad's pain is subsiding.  Bill told me today that he was trying Dad on just Tylenol, no codeine.  His bowels are behaving better, too.  We'll see how this works.

I am a little concerned with Dad's kidney function and Bill will make sure this is addressed by Hedari on Thursday.  His creatinine level is up to 2.9 which is fairly high.

It's great having Bill and Debbie managing everything.  There is a lot of information coming from a lot of directions and they do a great job of collating, passing it along, or finding descrepancies.  They are also great at giving us (Tom and I) stuff to do as well and I hope we're able to take a little of the load for them.  I can't say it enough - Thanks. I'm not sure where Dad would be if you weren't here.

John