August 31, 2012 update

Noon time update - Dad ate a good breakfast according to John.  He enjoyed the eggs, taters and really liked the OJ, having two of them.  John then took dad for a walk.

The Physical Therapist just came by and took Dad for a walk.  She said he is doing real well, but recommends he use a walker.  We found a nice one at Costco.com and ordered one yesterday for Dad.  His vitals just before his walk was 126/78 with 95 O2 level.

They just brought lunch and I have asked the nurse if he can eat it, thinking he might suppose to hold off before the paracentisis.  She is checking, but so far I am not impressed by her responsiveness.  I ask for a clean gown for dad an hour ago and we are still waiting.  Also Dad has not been given the platelets yet either.

The head nurse that checked Dad into the ER just stopped by and asked how Dad was doing, I said he is hopefully going home after the paracentisis, he looked at some report and said Dad is not on the discharge list for today.  I believe they will have to give him platelets first, wait some period of time and re-draw blood, checking his platelets, then do the paracentisis.  I don't know if we can check Dad in after hours or on the weekend, so we might be here for awhile, but we will have to check with Rosewood.

12:50 still waiting for the gown and answer to the lunch question.

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

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.

August 7th

We had two appt. yesterday.  The first was with Dr. Trang the ear specialist.  Because of the nerve damage (or Bells Palsey) he was able to confirm the diagnosis of skull based osteomyelitis (SBO).  Essentially this is a really bad infection in the boney areas around Dad’s ear.  He made an appt. to see another infectious disease specialist, a one Dr. Hydari (sp?), who he thought could do a better job of picking out the antibiotics.  Because of this infection we have to forego anymore chemo treatments for at least 4 weeks.  The antibiotic treatment will likely be about 8 weeks.

Dad was very depressed with this news and it was tough to see his reaction.  He didn’t even want to go to the afternoon appt. with Dr. Nguyen.  Bill, Tom and I kept that appt and had a good chat with Dr. Nguyen.  He led us to believe that the chemo is a corrective treatment not a palliative one.  In other words, we are not pursuing the chemo just to make Dad more comfortable.  There is a good chance for long-term recovery from this type of lymphoma.

Tom and Bill take Dad to see Dr. Nichols today.  They will look into draining fluid from not only Dad’s thoracic cavity but abdominal cavity as well.  We want to know if the fluid in Dad’s abdomen is having an effect on his appetite and digestion.

Dr. Trang gave us a prescription for a stronger pain killer and Dr. Nguyen gave us a liquid to stimulate Dad’s appetite.

Here are some of my thoughts (hope you don’t mind):

If you had your choices of diseases, the lymphoma might be near the top.  As cancers go, it doesn’t sound too bad.  On the other hand, bacterial infection that cause skull based osteomyelitis?  Well, that would be at the very bottom of my list.  It’s hard to get and hard to get rid of.  I’m sure like many of you, when told Dad had cancer and an ear infection, our first thought would have been that the cancer was more troubling.  This ear infection is nasty and now it has halted the chemo.  The chemo inhibits his immune system for three weeks.  After that, according Dr. Nguyen, it bounces back.  The bacterial infection has just retreated farther and deeper into his body making it much more difficult to attack.  We can’t stop the treatment for the ear.  It will cause unbearable amounts of pain as we have already seen in just a short time.  To me that path is clear.  Dr. Nguyen will tell us when he’s cleared for chemo again and asked that we give the antibiotic treatment two weeks before we do another assessment.

Best-cased scenario:  Dad responds to the new antibiotic treatments well enough for us to get three or four rounds of chemo, the lymphoma retreats, and then we are just fighting the war on one front – the ear.

July 27th

Tom just called.  Dr. Aziz called him this morning and Dad has to have some fluid drained from his lungs again.  Tom is going to get the blood work done today and the procedure is scheduled for Monday morning.  To put it in some perspective, Dad’s thoracic cavity was drained on 6/28 and then again just 12 days later.  Monday will be 20 days since the last tap.  Dr. Nyguen’s appt has been moved to Tuesday at 1:20 for a couple of reasons; so he can see Dad after the fluid removal, to get his thoughts on Dad’s ear pain if it is still present, and to give us a little more prep time for the chemo. 

July 25th

Just returned from the visit with Dr. Aziz.  Dad’s BP was 154/56 with an O2 level of 97.  Dr. Aziz was pleased with that and listened to Dad’s lungs and said he sounded good.  Dad complained of shortness of breath and Dr. Aziz ordered a chest xray.  He said if the lungs have too much fluid he will have to drain it again.  If not he will wait until after the second chemo treatment.  We went over to Kern Radiology and got the chest x-ray.  Dr. Aziz will only call if Dad NEEDS TO HAVE his fluid drained again.  Otherwise we set an appt. for three weeks. 

Dr. Aziz said the physical therapy would help Dad’s condition and said he would prescribe it, but would prefer to have Dr. Nichols prescribe it.  So, Tom, I don’t know how this works, but if you could ask Dr. Nichols office tomorrow that would be great.  I don’t know if it makes a difference but I would like to use Glinn & Giordano at 24 & and M.

Other observations:  Dad’s ear is bothering him.  He sees Dr. Rabinov tomorrow – just in time.  I would hate to have to take Dad out of county to see a specialist, but we might need a fresh pair of eyes on this problem.  Dad’s ankles seemed to be slightly swollen.  I think that happens in the afternoon though.  He had breakfast with Nedra and lunch before the doctor visit.  He seemed okay for most of the time I was with him.  It’s doctors – sit around and wait.

July 9th

Dad is in his room resting comfortably.  When Tom called, Dad was in the background making snoring noises.  Right now, Tom says they want to set up an IV and, are you sitting down?, draw some more blood.  Tom told them to take a little extra and Dad gave Tom the single-finger salute. They have a good nurse named Lyza on duty, and the shift nurse is right across the hall from Dad’s room. So should he have any complaints, he can walk across the hall.  BTW, he is in room 485. 

Just got this from Tom:  Dr. Aziz the lung doctor is going to extract the fluid in Dad’s lungs tomorrow morning, once that is done, they will do a CT of his lungs to see what, if anything is going on in there.  For the rest of the night they are just going to monitor his breathing.

Cate, I think we should let Aunt Lillian and Aunt Marge know that Dad is back in the hospital.  I don’t have their emails, but if you want me to handle it, I can if you forward me their addresses.

It sounds like everyone is one there way or close to it.  If you want to call Dad’s room the hospital number is 661-324-4647 and ask for room 485

July 3rd

Just got off the phone with Tom and he reported that Dad’s appetite is almost non-existent and he is somewhat lethargic.  This started, I believe Tom said, last night at dinner and this morning at breakfast.  The lethargy isn’t so unusual but from my time with Dad and watching him eat, it always amazed me how good his appetite was, so this does concern us a bit.  Dad has an appt with Dr. Nichols this afternoon. 

We think there could be one of two causes for the loss of appetite.  One, it could be the new med.  Jim, you read through the lit on that, any thoughts? 

The other could be a fluid buildup in his abdomen similar to what occurred in his lungs.  The fluid could be putting pressure on his stomach making him feel full all the time.

We’ll let you know what the doctor says.  My advice to Tom was to ask Dr. Nichols what would happen if we stopped the new med, but I think Dr. Nichols will go deeper than that.

Tom, I have a meeting from 5:30 until 10 tonight and will not be available.  If you need to contact me before or after that, I will have my cell phone handy.

Doctors report:

Dr. Nichols said Dad was looking better.  His lungs were in good shape.  He did take him off of one medicine and put him on another, Megestrol (Megace 40 mg) for his appetite.  His demeanor was better and once Tom and Dad started working on a project, Dad seemed okay.  He did pack his bag and plans on staying at his house tonight.  The Life Alert came late today and we are going to install it in the morning.  Dr. Nichol said Dad has about 5 liters of fluid in his abdomen and he advised against removing it.  He said it would likely just fill back up and Dad runs the risk of having some of the cells in his abdomen die (I guess as a byproduct of the fluid removal).  I think I got most of the important points.  Tom and Dad are headed to the Olive Garden where I’m sure they’ll eat like family.