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

Gallium and PET Scans

Bill asked me to do some research on Gallium scans and PET scans for the purpose of determining the levels of infection and cancer in Dad's body.  Here are some of my early thoughts:

• Gallium citrate appears to be no more dangerous to the kidneys than the antibiotics Dad is currently taking.  It is often used to diagnose kidney function and nephritis.
• After the Gallium is administered images are taken at regular intervals the first day than once a day for three days.  Each set of images takes about 30-60 minutes to produce.
• Sometimes Gallium scans are also used to determine the level of lymphoma and there may be some value to Dr. Nguyen which may preclude the necessity of a PET scan.  However, Gallium is mostly used to diagnose the level of non lymphocytic lymphomas and may not be acceptable to Dr. Nguyen. (my understanding is Mantle Cell is a lymphocytic lymphoma).  
• There are two other types of scans that may also be used, indium leukocyte imaging and technetium granulocyte.  The indium scan is NOT appropriate, but I would be curious to hear what Dr. Hedari and Trang feel about the technetium scan.
• IF the Gallium scan does take place, please let the testing institution know he has diarrhea and NOT to administer laxatives (this is sometimes, not always, but sometimes done to clear the Gallium from the body)

Some questions for Dr. Hedari at today's appointment:

1. Does he agree with the timing and purpose of the Gallium scan currently scheduled for October 1st?
2. Is the Gallium scan the most accurate in identifying the clearance of the SBO?  What about  technetium granulocyte scan?
3. Is this test going to significantly impact Dad's remaining kidney function?
4. What if the test still shows positive signs of SBO?  Do we just continue the same antibiotic regimen?  Will we need a future Gallium scan?
5. Can we concurrently scan for the level of lymphoma to eliminate the need for the upcoming PET scan?
6. Are there any suggestions he could make about this procedure to give Dad's ENT and Oncologist more and better information?

These might be better for Dr. Saike, but I think Dr. Hedari's opinion is valuable too.

1. Is the PET scan hard on Dad's kidney?
2. Is there a safe time period between the Gallium scan and the PET scan that should be observed?

That's it for now.  I may add some things as I ruminate about this.  I did find a scientific article that recommend the use of N-Aceytl-Cystiene (NAC) as a protector of kidney function for both Gallium and PET scans.  NAC is a nutritional supplement I can provide if you choose.

And this may be completely irrelevant (audacity of hope, and all that) but I did run across this article on the curability of Mantle Cell Lymphoma.  Granted it was a small study of subjects younger than 89 (they averaged 66), but it did talk about 5 year survival rates.
http://www.docguide.com/mantle-cell-lymphoma-curable-intensive-immunochemotherapy-presented-ash

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.

Paracentisis Aug 23, 2012

Today was a another pretty rough day for Dad, I went to wake Dad up about 10 am and found him crying in his bed.  Not quite as bad as yesterday, but he was just feeling miserable.  I asked him to get up and eat, but I had to dress him as he could not put on his shorts or slippers.

He did get up and ate some shredded wheat, then said he had to go to the bathroom again and when I went to check on him after about 15 minutes, I found him in bed.  He slept from 11 - 2 when I woke him up again to get ready for his doctors visit.  We made it to Dr Heidari where Dad got weighed and had gained 3 lbs from last week.  Dr Heidari was watching Dad get weighed and have his vitals taken, he saw that Dad had gotten weaker from the previous week.  He also noticed that Dad's facial paralysis was slightly better than two weeks ago.  Dr Heidari said that Dad's kidney function is down to 19% from 23% previously, additionally he said Dad's ESR was at 50, which I understood was holding steady.  He said this is a measure of infection/inflammation and thought that holding steady is a sign of improving.  He asked whether Dad was scheduled for chemo and I said he was not.  He offered that he thought Dad is very weak and did not see Dad being able to tolerate chemo.  He did say he is not an oncologist, but that was just his opinion and he would re-look at it in a couple of weeks.  He also said that Dad's ears are looking better and that he can see the ear drum.  The right ear is dry and the left still has some fluid.

We then went to get the paracentisis, or fluid drained from his abdomen.  As they were prepping Dad, I asked the doctor what his guess was for how many liters they would remove after looking at the ultrasound of Dad's belly.  He said 3 to 4 liters, absolutely no more than 4.  Well they removed 7.3 liters, which I calculated to be over 16 lbs.  Dad had the fluid removed while under a local anesthetic, but he was very quiet during the whole procedure.  When they finished they said since they removed more than 5 liters they needed to give Dad Albumen to help replace some of the protein he lost due to the procedure.  While getting the IV, Dad slept through the 45 minute procedure.

Dad came home, ate and went and sat in his chair where he would dose off again until about 8:30.  Even when Nedra called right after he came home to see if she could come over, Dad said he really didn't want company even if she was leaving tomorrow for Costa Rica for 18 days.  We watched some old home videos that you should have gotten a link to.  It was had to watch some of the video due to it's quality, but since I was able to have it on the tv, it helped. His memory is still very good.

When going to bed, he said he was feeling much better.  I am hoping we can get Dad to do more tomorrow than today.  We do not have any planned doctors appointment now until next Tuesday.

Also, if anyone wants to skype with Dad, I can now run it through his tv and speaker.  He really enjoyed seeing Catie and Amelia and that was just on my pc.  If you are interested, just let me know so I can set it up in advance.

Just one side note from yesterdays visit with the opthamologist, Dr Alexandrakis said that macular degeneration can be genetic and suggested that Dad and all of us take Lutein regularly.  I hear Cay Health Food can supply all of your needs!!

Dr. Hidari August 16th

Just got back from Dr. Hedari.  He had collected a lot of information from the hospital and other doctors.  He spoke with Dr. Trang and both agreed Dad was doing a little better.  His blood work showed that his kidney function seemed stable at around 23%, no fever, and his white blood cell count had retreated.  These items coupled with the reduction in pain indicated that the antibiotics are working.  The next indicator is Dad’s face.  Dr. Hedari said that as the antibiotics continue to work the infection will be reduced in the bone surrounding the nerve.  As the infection is reduced, the inflammation is reduced and the nerve comes back to life.  Because of Dad’s limited kidney function, the doctors can’t do a contrast study to find out where the infection is or isn’t.

He was concerned with the fluid in Dad’s abdomen.  Personally, I didn’t think it was “substantially” more than it has been.  Dr. Hedari looked like he had never seen it before.  Tom has been asking about it for the last two weeks at least.  Anyway, we told him that they had re-prescribed Lasix(the water pill) and we’re hopeful that that reduces the fluid amount.  Will monitor his weight to see if the fluid goes down.  Dr. Nguyen had said that if the chemo was working that the fluid would be reduced.  Dr. Hidari says we are at least 3 weeks away from even considering another round of chemo.

Dad seemed in good spirits.  Bill said he was up early, had a little breathing problem and they used the allbuterol once again.  This time he didn’t feel jittery.

Aug 10, 2012 Update

Sorry for not getting an update out yesterday, we have been pretty busy. Tom and I did take Dad yesterday to see Dr Heidari, an infectious disease specialist, that Dr Trang recommended.

We had to wait for a bit, but we were there just over 2 hours. Dr Heidari is very thorough and wanted a complete history of dad from as far back as we could go. Tom and I had a couple of debates over when something happened or dad had a procedure, time just seems to blurr and it was easy to confuse when something happened. Dr Heidari asked us for next week to pull together as much information as we can, including a timeline, procedures with results and any lab tests with results for as much as possible. John must have known what this doctor was going to ask us, as he was pulling together all the information in a blog that we can use.

Since Dr Heidari did not have any tests other than the CT Scan, which he said Dad has osteomylitis in both ears, he said he was going to put Dad back on medication similar to what he was on before to start out with. So Dad is on Daptomycin and a second different drug call Zosyn. Dr Heidari said the Zosyn is better at fighting infection in the skull than cefeprine. He has ordered these meds for 42 days, with Dad getting the Daptomycin every other day and the Zosyn every 6 hours. Both are give in a drip form, with each one taking 30 minutes to administer, slightly different than last time.

Overall Dad’s mood is much better than it was a few days earlier. Yesterday when we were waiting in the doctors office Tom asks Dad how his vision was. Dad said it was better and I asked if he could see Tom’s face clearly, Dad turns, looks at Tom and screams, saying maybe he could see him a little too well.

Dad is eating better, eating two scrambled eggs for breakfast and a good lunch. He particularly likes Deb’s home made chocolate chip cookies!

Dad wanted to go through his checking account last night, we found a couple of errors, but we got it cleared up. Also, we are working on getting a power of attorney for all five kids. This will give us the ability to ask questions on Dad’s behalf as well as hopefully use his credit card when we have to buy something for him. Catie, we will have to get you to sign it, scan it in and send it back.

Aunt Margie called today, she could tell that Dad is not doing well. She asked that we give her regular updates. She was pretty upset over hearing Dad.

Next week will be pretty busy as it looks like we are getting some company. Will and Krys left their house and are heading out with the kids. They hope to be here Monday. Sarah and the kids will also be coming down Monday as well. Amelia will also be coming out Monday and probably leave on Wednesday. Tommy will most likely come down on Friday and stay the weekend.

Dad has appointments Monday through Thursday next week, getting an x-ray on his chest, and an ultra-sound on his abdomen on Monday. Tuesday we go back to Dr Trang, Wednesday it is Trevor and Thursday it is back to Dr Heidari.

That is about it for now. Tom feel free to add anything I missed.

Love to all,

Bill