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.

Heart Hospital Thursday Mornining

Right now they are saying they MAY not release Dad to skilled nursing because of the fluid in his abdomen. No firm decision has been made yet. Dr.   Amin just spoke to us and we continue on the Zosyn and another oral antibiotic. He did confer with Hedari.  When I asked him if Dad could be released to skilled nursing, he said that would be his recommendation but the hospitalist would make the final determination. Dad spirits are a bit lower this morning. He ate breakfast, but is a little weepy. Dad's creatinine is still 2.9

He was sleeping when I arrived he got up for breakfast and now is back to sleep.

A couple of other notes:

Don, the physical therapist came in and I hung around while he did his evaluation.  He had Dad walk around the floor, which Dad did at a good pace.  We walked by the case worker, Delphe and said hi.  Her and Don talked and it sounded like they were on board with Dad going to Rosewood.  After the walk Dad said he didn't know why but he was more fatigued today.  Don scheduled something for tomorrow although I told him it was our hope to get him to Rosewood.  Nurse Kara can be a bit officious and I tried to impress up her the fact we could lose the room at Rosewood if Dad doesn't make it there today.  I also told her if Dad needed another paracentisis I would be glad to take him as an out patient.  I think she was warming up to me.

Aunt Lee

Saw Aunt Lee last night. She is in Memorial. The daughters were there. If you talk to Aunt Lee Sandy asked that we no mention this, but from what Sandy said, Aunt Lee has thin blood, leaky heart valves, coronary blockage, and kidney disease. They gave her a transfusion last night. We played one game of backgammon (she won) and she looked weak, but her spirits were good.  Do not know how long they plan to keep her in the hospital.

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.

Heart hospital Tuesday morning

Conversations from our messaging this morning: Dr Amin, the infection specialist, came in this morning. I wasn't here.  I told the nurse we use Dr. Hedari. They are scheduled to give Daptomyacin today. They said if we wanted to continue the sac. Boul.  and probiotics we could bring those from home. They have not got the cream to put in his eye yet.  Nurse Susan will be here all day. She seems to have the full list of Dad's meds. They have norco approved for pain. That's the strongest painkiller on his list, but it doesn't seem like he is having any pain so far. They gave Zosyn at 6am. I'll be heading to work at about 9:45.  Susan said a room opened up and there was one patient ahead of dad, so we should be next up in the que. Dad's spirits seem level today.

August 27, 2012 Update

Dad is scheduled to go into Bakersfield Heart Hospital today, here are a list of the medications that he is currently taking:

William E Harrer's Medication Schedule 8-28-2012
					Dr
Antibiotics
Daptomyacin (started 8/10/12)	Cubicin 500 mg in 50 ml 0.9% NS IV Drip every 48 hours @ 12 noon				Heidari
Zosyn (started 8/10/12)	2.25Gm in 50ml 0.9% NS IV Drip every 6 hours				Heidari
1 Levothyroxine (Started 8/19/12)	50 mcg tablets, 1 tablet/day				Nichols
1 Atenol	50 MG tablets, 1 tablet/day				Nichols
Refresh Tears Lubricant eye Drops	2 drops evry couple hours				Nichols
Lacri Lube and Patch					Nichols
Furosemide 10MG Solution	1ML per day				Nichols
1 BiCarb Soda	650 MG Tablets		1 tablet 2x/day		Nichols ??
Megestrol for appetitie (as needed)	5ML liquid 2x per day, currently not needed				Nguyen
1 Lexapro	Escitalopram Tab 10MG Teva				Nguyen
Procrit	1/week at Dr Nguyen's Office				Nguyen
ProAir HFA (Albuterol)	90mcg IWAK				Nguyen
1/2 HC  Every 6 - 8  Hours/as needed	Hydrocondon-APAP 10-325 Tablets				Trang
1 Vitamin D3	2500IU  Tablets
1 Kyo-Dophilus9	Capsules
Lutein	20 mg lutein, 1mg Zeaxanthin
Immoduim AD as needed only
Saccharomyces Boulardii	5 billion per capsule

Help with kidneys

In trying to determine what might help Dad with energy levels AND kidney function I came across this article from a respected source. I am fairly confident if asked, none of Dad's doctors would endorse this action, but I would be willing to supply the CoQ10 if we want to give it a try.

 http://www.bastyrcenter.org/content/view/882/

 This article has a good explanation of kidney function:

 http://www.lef.org/magazine/mag2010/may2010_Innovative-Strategies-to-Combat-Kidney-Disease_01.htm

August 25, 2012 Update

Dad got up a short while ago and got himself dressed, including putting suspenders on his shorts.  He jokingly said it only took him a half hour to do it, but he was determined.  He has been feeling better since the paracentisis and we even went to Kyle's birthday party last night at Tony's Pizza.  He did well, came home watched tv until 10:30.

Yesterday we took measurements so we have a reference of how much he is swelling up.  Dad's legs are still fairly swollen, Dr Heidari said they were a 4 plus and had a technical name that I could not remember.  Hopefully this will give us a better idea when we really need to push for fluids to be removed, not sure, just an idea to try.  Here are his measurements as of 8/24/2012:

Chest 38.5 inches
Stomach at belly button 41 inches
left ankle 10 inches
right ankle 9.5 inches
left calf 15 inches
right calf 14.5 inches

John will be coming over today to spend the day with Dad, and Deb and I are going to explore Bakersfield for the day. 

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.

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!!

Opthamologist Report

Update from Dr Alexandrakis, opthamologist, today.

Dad has no useable vision in his right eye.  Dad's left eye is at 20/100.  He has dry macular degeneration in both eyes.  Both corneas look good.  Dad's left eye surface is rough from not getting enough eye drops.  We need to give him eye drops every couple of hours, even when his eyes have been watering.  Continue the lube at night.  He feels that Dad's left eye will regain it's original shape, but wants to see him in 3 weeks to assure.  If it does not, and there is a chance especially because the eye lid surgery he had done in the past makes the eye lids tighter, then he will need a procedure that will most likely require him to go to L.A. for it, it is a very advanced procedure.

Tom is taking Dad to Dr Aziz right now, then to get blood drawn for a paracentisis tomorrow at 3:45. 

Bill

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

Aug 20, 2012 Update

Just a quick update on Dad.  Dad was pretty depressed this morning, just sick and tired of feeling sick and tired.  He was pretty emotional and said he wasn't going to SIRS today.  Deb and I had a conversation with Dad about the need to get out and do more and hopefully the more he does the better he will start to feel.  Dad did agree to go to SIRS and he did well except for his hearing aid battery going dead.  Dad got dressed and even put on shoes and socks for the first time in a few weeks.  On the way home, Dad said I did pretty well, huh?

When we got home I asked him if he wanted to take a nap and I would give him his IV in bed, he said no and stayed awake.   I could see him re-grouping and getting his fight back.

Tomorrow we will go to Dr Nguyen for a appointment and a shot and then we will go to Rosewood.  Today we put a down deposit on one of two rooms and we want Dad to pick which room he likes the best.  He seems to be accepting the fact that there are changes that are going to have to be made. 

Wednesday we will a opthmalogist and Dr Aziz, the lung doctor.  Dad is concerned about his vision and has been having to use the Albuterol more the past 5 days. 

Love to all,

Bill

Just a note

Flipping through the channels I came across the NFL game tonight.  The announcers mentioned a player diagnosed with non-Hodkins lymphoma (Dad's type) during the combines.  He was treated, played three games last season and had a full off-season to train.  He was looking good for this season. I take some comfort in that.

Thyroid medication

Bill reported they added thyroid to Dad's regimen. I have blood tests from 11/10 & 12/11 and all thyroid test were in the normal range. I wonder if adding thyroid will help his energy?

We broached the prospect of moving to Rosewood Retirement Home for awhile until his strength returns. He took it as well as could be expected.

Hoffman Home Care Notes 8/17/2012

Had a good conversation with Tom Hoffman over at Hoffman Home Health.  Here's what I learned:

Dad is paying a flat rate of $283/day for his antibiotics.  Medicare doesn't cover this.  If he had Part D it would be about a third of this price.  He suggested we look into changing it.  I wondered about that and if it would cover any of this and he said not this time, but maybe next time. (On the drive back, I wondered to myself if we had switched to Medicare D when he was in the hsopital the first time, would this current therapy be covered).  He suggested Paul Sheldon at Advocate Insurance, 398-2298 as a good agency to talk to.

He said when he gets the contract to supply a patient, they tell him what is being done and he tries to give them all the supplies they need.  Unfortunately, there is no one method and different home health nurses teach different porcedures.  He did say we should be flushing the off-side picc line every 12, not 24 hours.  He also said the red box should only be used for sharp objects only.

When I asked who should we talk to in his office if we have questions or problems, he replied, "me."  His number is 377-0180.

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 15, 2012 Update

Dad had a mixed day today.  I woke him up at 9:00 am so he could say good-bye to Amelia and he was in good spirits and feeling fine.  About 11:30 am Dad said he was having a hard time breathing so Deb gave him the Albuterol and that seemed to help him out.  At 12:45 I am taking him to his doctors appointment and he say he feels nervous and jittery.  I suspected the Albuterol, but only because it was the only new thing he had had today.  Trevor at Dr Nichols said he sounded fine and his O2 level was at 97%.  He did draw blood to check a few things, but said he would call only if they found something abnormal and they did not call today.

Trevor also said Dad's last x-ray only showed a little fluid in both the chest cavity and abdomen, but not enough to warrant draining either one.  We see Dr Aziz next week and Trevor wants an x-ray done in a month and see him in 6 weeks.  There were no changes to Dad's medication.  We did mention to Trevor that Dad's eyesight has not improved much since he had the facial paralysis.  He recommended seeing an Opthamologist and had one of staff call and make an appointment for next week.  His pain level has been about a 2 all day and he has been awake alot more the past two days.  He is still very weak and unstable.  His sense of humor is still good, commenting tonight after putting two eye drops in his eye, that I should be a bombardier. 

He is / has been enjoying the grandkids being here and spending time with them.  He does get quiet and I assume that is primarily because his hearing is not good enough to follow the conversation, so he tunes out.  We were wondering if Dad perhaps could use the second hearing aid, so we called House Hearing Center and found out that a new one will cost about $2500, remember he lost his other one.  We then called Dr Trang and asked him if we could put a hearing aid in Dad's left ear and Dr Trang strongly recommended against it.  He feels that Dad has not recovered enough to place something in his ear at this point.

That is it for now.  Tomorrow Dr Heidari at 2:15 and Ramon stops by to draw blood.

Love to all,

Bill

Senior Living

My first customer today was Irma Langston, Resident Service Director for Pacifica Senior Living.  They are on Brookside Dr., Ph 663-9671.  I don't know anything about this facility's reputation, but I do know they have all levels of assisited care.  They are available for tours as well.  She says you are on a 30-day contract.


Another contact is Elizabeth Rodgers, Director of Admissions Marketing for Rehabilitation Center of Bakersfield, 2211 Mt. Vernon Avenue, PH.  872-2121 x 4018.  You might remember me running into Elizabeth and her assistant at Memorial. I'm not sure of all the levels of care they provide, but you're welcome to call her and mention my name (or give me a list of questions and I will be happy to contact her).  We known each other for awhile.

One last note, on speaking with Irma, she said if we were looking for medi-medi coverage that we needed to contact a placement service.  (I'm not sure what any of that means)

I'll use the tag Senior Living to keep track of these addresses and numbers.

August 14, 2012 Update

Dad had a real good day today.  He was up at 8:30 to get ready for his doctors appointment and only took a one nap and a couple of short 20 minute naps.  His energy level was a little low in the evening, but we had the kids and grandkids here which makes it a little hard. 

Other good news, Dad test for C-Diff came back negative.

We did see Dr Trang today who noticed a big improvement in his mood and mentioned that he could see Dad's left ear drum for the first time.  He told Dad that he would be on the antibiotics for at LEAST 6 weeks and probably longer.  Dr Trang wants to see Dad in two weeks.  His pain level was 2 almost all day, he is eating good and sleeping good.  His weight today was 167 lbs up 2 lbs from last week.

Dr Nguyen called today to check up on Dad and Tom told him that he is doing better but sleeping a lot of the time and tired a good portion of the time he is awake.  He asked Dad to come in for a Procrit (EPO) shot, which we did after Dr Trang's office visit.  This will help with his anemia and hopefully give him a little more energy.  We asked Dr Nguyen about the Lasix and he said Dad could take it (Trevor would order it for the fluid in Dad lung/abdomen as well as the swelling of his feet/ankles and Dr Nguyen would take him off of it).  Dr Nguyen also said he would prefer that we keep Dad on the Lexapro (anti-depressant) and cut back on the pain meds.  We tried putting Dad on 1/2 tablet on Hydrocondone 4 x today and he said he pain was ok.  We are hoping that the antibiotics are starting to kick in.

Dad has enjoyed his visits with Amelia, Will, Krys and Sarah.  He hasn't been able to enjoy the smaller kids too much, but it sure has helped me having the little ones here and the energy they bring.

We see Trevor at Dr Nichols office tomorrow at 1:00.

Love to all,

Bill

Stopping Lexapro

Hey there.. I have a concern about stopping or inconsistency or dosing.. I don't think it should be stopped without discussing with one of the Docs... Thanks for the Blog.. it is really helpful!

Home Health Money Saving Tips

Ranae talked with our home health friend, Wendy. Here are some of the things she mentioned: Find out why those line items have no extension and the descrepancy between the actual total and the listed total. (I'm sure Bill is looking into this) Also, things like the IV stand. Make sure that price is the rental of the stand for the term we need it, not by the week or the month. Things like those red waste containers cost, so make sure the things we put in them really need to go in there. Things like alcohol swabs we maybe able to purchase at Costco. Wendy mentioned that Walgreens Option care offers competitive prices. She did say the company we were using had a good reputation.

August 13th

Woke Dad up at 6:45 to give him his blood pressure meds. I was considering trying just a half a tab of HC, but when I asked him about his pain he said it was a little higher than last night. I gave him a full tablet. It had been 9 hours since his last one. The dose on the bottle is 2 every 4-6 hours so I think we're doing well in that regard. He offered, before I could ask, that he slept well. I gave him the outlook on the day, put some eye drops in, and told him I would be back at 7:30am to get ready for Ramon.

Email Notifications

The blog is up and running.  I've put everyone's email address in so whenever someone posts or comments you will be notified.  If you find it's too much email I can take your name off the comment notification, or the post notification, or both.  Just let me know.  If someone else would like to be on the blog list just send me their email address.  You should not be able to see this blog without an invitation.  If you can, please let me know that, too.

I'm sure you will find some mistakes.  If you see something that needs to be changed and you can't figure out how to do it, let me know.  The picture on the front page is one Bill took with my camera back in January 2011.  You can still see a little of that sparkle in his eyes...

The post below tells how our Sunday is going.  We played a little five straight.  He is still sleeping most of the day, but he's on a little less pain medication.  We hope to enjoy the closing Olympic ceremonies.

August 12th

7am:  Dad slept well.  He does that a lot.  Bill and Debbie suggested we try and forego the Lexapro on top of the Oxy to see if he can have a little more active day.  Last night he did not get a Lexapro.  On hindsight I wish I would have given him half.  Any thoughts on giving him half today, or forgoing it and see how he does?

Last week when we saw Dr. Trang and Trevor on the same day, Dr. Trang prescribed hydrocodone and then a few hours later Trevor prescribed the Oxy.  The Oxy makes him really sleepy, so this morning his pain level was about a two, I thought I would try one of the hydrocodone and see how he does.  It would be great if the Zosyn and Daptomyacin start kicking in and we can back off on the pain meds a little. We have about a two week window before he starts building a tolerance to them, so the lowest dose that keeps him comfortable is the best.  His bathroom visits last night were minimal.

Up at 9am making oatmeal (himself).  Ate well.  Says he is feeling a little better. The pain level is not too bad. The hydrocodone (I'll call it HC from now on) was prescribed at two every 4-6 hours. I gave him one at 6:30 and another after breakfast around 9:45 and it seems to alleviate the pain without making him too drowsy. During five straight he was finding the pegs okay but he said the numbers were getting smaller. Fell asleep around 10 am.

Slept til 12:30,administered both antibiotics, he had a baby muffin, and now he is in the shower.  He said his pain level is not too bad.  As soon as he gets a little more food in him, I'll give him another HC.

We put the glove over the PICC line.  He asked me to take off the Life Alert so he could wash is arm.  I did and set it on the shelf of the shower and told if he needed me just push the button.  It scared the crap out of me when it went off.  The glove had leaked and he needed help getting it off.   It worked well.  I canceled it before the operator came on.

Unfortunately he did not eat much for lunch, just that little muffin and some juice.  I gave him the HC anyway. It had been five hours since the last one.  He said it hurt a little bit and he wanted to go back to bed. It's 2:45 and he is sleeping now.

Ranae brought over a light Great Castle meal (veggie fried rice and Chinese chicken salad). Dad had about half to 3/4 plate of food, a cookie and fortune cookie. Gave tha Zosyn at 6:20. We are watching the closing ceremonies and he says he only has a little pain, level 2. His las HC was at 2:45.

Dad got out of his chair around 9:30 and made himself some hot chocolate and had a muffin. He had had a cookie about 20 minutes before. He took one more HC. I hesitated giving this to him. It had been 7 hours since the last one and his pain level was at a two. Maybe tomorrow we should consider breaking the tablets in half. Catie called and he had a good conversation with her. He held the phone himself and was able to understand her fine. He did mention that watching tv was getting a bit tougher. His eyesight is not real good. Getting ready to administer the midnight dose of Zosyn.

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

August 9th ~ Is this improvement?

This may mean something. It may not, but either way it's a change and I believe a positive one.

I haven't looked at a blood test result for some time. Frankly there weren't many changes. Bill handed me the results of the samples collected on 8/3 and I immediately noticed a difference. Every blood test that I remember looking at, Dad had a WBC of 6 or 7. That's fairly normal for you or me, but Dad had an ear infection. Why wasn't it higher? (WBC or White Blood Cells are the pac-man like cells that have the task of getting rid of the infection.) He has and infection. It SHOULD be higher. Well the results I'm looking at now reflect that. Dad's WBC was 15.3 - double what it has been running! My interpetation is that his immune system is starting to wake up!

The test also differentiates the white cells into groups. One of the groups is called neutrophils. Neutrophils have the ability to digest bacteria cells. In June Dad's neutrophils were 3.3 - on the low end of the spectrum. This week they are almost tripled to 8.9. Lymph cells, another type of white cell, were 1.8 in June and they too have tripled to 5.6. I would be asking the doctor before I got to excited about these results - maybe Dr. Hidari would have some input. I think they very well could be a positive result of the chemotherapy and an early sign that Dad's immune system may be coming back online.

The other results show that Dad's kidneys are running about the same level with the creatinine at 2.22 and the BUN at 62. One point of interest, and I'm not sure this is good, but this test was taken after Dad had diarrhea for 4-5 days. Remember, when Dad's potassium was high and they gave him a med to give him diarrhea to bring it down? Well, just based on that, you would think Dad's potassium would be low, but it wasn't. Not sure if that is significant at all.

Aug 8 Dad Update

Just a quick update from today on Dad.

Overall he did much better today, but he also slept a lot today too. We didn’t have the emotional swings that I have seen in previous days. He ate fairly well tonight, another positive sight.

We did see Trevor at Dr Nichols office today. He is changing Dad’s pain meds again, giving Dad a stronger pain med, but he shouldn’t have to take it as often. He is also putting Dad on a diuretic called lasic that he is hoping will help keep the fluids down in Dad’s lungs, abdomen and feet. Dad will also have a chest x-ray tomorrow and a ultra sound of his abdomen to see how the fluids are doing.

Trevor said Dad was not positive for the Herpes virus or Shingles, which he believed was the underlying cause for the Bells Palsy. He agreed with the course of action and will see Dad next Wednesday.

Also, the results for the c-diff will not be available until Friday at the earliest. Trevor expects that it will take at least 3 months for the facial paralysis to get better and could take up to a year. In a few cases sometime the facial nerves do not recover.

That is about it for now. We will meet with the infectious disease doctor tomorrow.

Love to all,

Bill

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.

Aug 6 Dad Update

Here is a quick update on Dad today.

He was awake today three different times. In the morning and afternoon for 2 & 1/2 hours each. The third time in the evening for about 1 & 1/2 hours, as he just fell asleep in the chair. Dad’s two top priorities today are the too frequent bowel movements. I saw him eat 1/2 of a banana and then run to the bathroom literally 2 minutes later. Since we were collecting a stoool sample to check for c-diff, I had a chance to see the discharge, and basically it was just ground up banana. I am very concerned that he has not gotten any nutrition since this started Thursday.

Dad’s second concern is his ear pain. It is unclear to me whether this is mastoiditis or this is from the bells palsy. His pain level was up to a 7 tonight. We gave him another Tylenol and offered him one with codeine when he is ready for bed. Right now he is sleeping in his chair with the heating pad on his side of the face.

Dad has said he does not want to go to the drs appointments tomorrow. He is very frustrated and doesn’t feel anything is working. John came over and said his face looks better than last Friday and I told him that he was able to blink about 75% with his left eye. I will try again in the morning to get him to go, but either way I expect Tom, John and I will be there to talk to the doctors. If you have any specific questions you would like asked, please let me know.

Dad has not wanted to play 5 straight, but has been willing to watch the olympics. The only good news is that we gave dad imodium ad today about 2pm. He had two home made cookies around 3:30 and didn’t go to the bathroom until almost 4:30. He ate a little for dinner and did not go to the bathroom afterwards. Keep your fingers crossed that this really helps.

That is it for now, please let me know if you have any questions or feel free to call. Dad’s appointment tomorrow at 10:30 with Dr Trang and 4:00 with Dr Nguyen.

Love to all,

Bill

August 1 Medications

Catie's Notes

Medications – William Harrer – August 1-2012  (after seeing Dr. Nguyen and Trevor in Dr. Nichols office)

With notes and questions (if any)

Beginning at 7 pm on July 31^st:

1.       Prednisone, 20mg as follows – 3 tabs once a day on Tuesday and Wednesday evenings, with dinner – On Thursday (Aug. 2), Friday and Saturday (8/4) he will take 2 tabs once a day, then on Sunday (8/5), and Monday (8/6) he will take 1 pill at dinner. He will be out of the prednisone on Monday (8/6)

2.     Metronidazole, 250mg, 1 tablet 3 times per day – I do not see that he is taking this any longer.  He only has 2 pills left in the bottle, but none were in the pill case, so I know he has not taken them since I have been here.  Dr. Nguyen – Should he still be taking this?

3.      Atenolol, 50mg, 1 per day, 90 days

4.      Sodium Bicarb, 650mg, 1 tabs, 2 per day,

5.    Vitamin D - One a day

6.     Vitamin B supplement  2 times per day.

7.   L-Lysine – 500 mg Capsule – 4 times per day (this is intended to help with the virus infection) –

Dr. Nguyen – is it okay if he takes this? Is there any risk to his kidneys or liver? 

8.  Lexapro 10mg – for mood.  We will wait to give him these until he settles in with this latest round of prednisone as to determine how he is reacting to the prednisone in relation to mood and energy level.

9.  Valtrex – 1 gram (it is HUGE).  He will begin taking this after seeing Dr. Trevor on Wed. Aug. 1^st..  One of the side effects of Valtrex is DEPRESSION – so.. be aware.. I have taken it several times and I have had severe depression when on it.  It can also cause dizziness.  This is for the viral infection – which could be the underlying issue with the Bell’s Palsy. 

10.  Lacri-Lube (over the counter ointment for eye) He needs this at night, then cover eye with tape.  He also needs to use artificial tears throughout the day. This is really important to ensure his eye does not get ulcerated. 

In Addition:

Inhaler, Proair, HFA 90 MCG IWAK, Albuterol Sulfa, 2 puffs as needed.

Questions:

?? Should he be using the ear drops still?  The ciprodex?? I have a full prescription, but have not been giving it to him. 

Stopped per Dr. Nguyen:

Allopurinol, 100mg, 1 per day, 30 days
Augmenten – which was prescribed by Dr. Rabinov.
Furosemide