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.

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

June 12th

Dr. M. took some blood and there were some positive results I thought you might like to hear about.

First, his red blood cell count was 3.1.  My records show it hasn’t been higher than this since Feb. of 2010.  His hemoglobin is above 10 for the first time in a long time and his hematocrit is over 30, again for the first time in two years.  More importantly is his kidney numbers stayed steady through his hospital experience.  His BUN, which is body’s ability to get rid of wastes, was 46, down from 64 in March.  And his creatinine stayed steady at 2.5.  These results were not fasting and I’m not certain if that skews the results.

On a side note, Bill – I’m not sure the hemoglobin/hematocrit results will suffice for Dr. Saike’s visit next week.  Again, I’m not certain, but I think I remember Dr. Saike’s office saying the results had to be within seven days.

May 18th

I don’t know if they call this “managed” healthcare or not, but I sure don’t. So here is where we are at at 10:40 am Friday. Since my last update, Dr Kitt, an infectious disease specialist came in sometime during the middle of the night. They did start Dad on Vancomycin about 3:00 am and he was done with this IV by about 8:45 when I came in. Dr Rose arrived at the same time and we did talk for awhile. She said they were getting ready Dad for a MRI and that she wanted him to also have a special scan. I asked why the MRI and she said one of the other doctors ordered it along with blood and urine samples. Since they took both in the middle of the night I let those go. That is all they have done so far. Dad’s pain level is currently an 8 out of 10, with 10 being unbearable. This is higher than at anytime yesterday, but not as bad as Wednesday. I just talked with his nurse and they are getting him pain medication. He is getting tylenol with codeine. Dad was just started on two different anti-biotics shortly, they are Cefepime, an injection given through his IV very slowly and Zyvox 600 mg, a pill. These were suggested by the contagious disease specialist. I did ask Dr Rose if they were concerned about Mersa and she said no. Her main concern is whether he has an ear infection that is affecting he mastoid or whether he has a mastoid infection that is affecting his ears. She said treatment would be different depending on what they find. Dr Trang is expected in around 4:00 today. He is an ENT that specializes more in ear problems and is also an ear surgeon. Dr Rose has been consulting with him on Dad’s case. John, I did tell them about Dr Saike and the Aransp injections that he is getting. They said they will inform his doctor and that it is up to the doctor to contact Dr Saike. His red blood count was at 2.85, if that means anything to you and that his calcium is low too. His blood pressure is high, around 160/80. Things move slowly in the hospital, but I do believe we are moving forward. Dad is resting right now. I will let you know if anything else changes. Bill

According to John, Dad received an EPO (Procrit) shot today.

This was not Procrit, but something similar call Aransz and I think the dose was 60 mcg. - John

According to Dr Rose's patient notes:

Dad will have a CT scan today, verbal reporton CT - right and left mastoid opacification, left ME largely opacified, left can filled with tissue, not bony erosion.

April 24th

He had his third shot this morning.  His hgb is up to 9.4 and his HCT is up to 27.9.  Both of these numbers are improving.  It’s hard to say if he has a substantial amount of improved energy.  He did go out dancing last night until 10 pm and was at the Dr.’s office at 8:30.  This is working out to be a pretty good deal for me too, as he buys me breakfast after the shot.  I can tell you he’s got a pretty good appetite… for breakfast anyway.

John

April 10th

Saw Dad this morning for his 2^nd EPO shot.  His numbers were up a bit.  Just wanted to let those who were concerned about his leg know that he went dancing with Nedra last night.  He said he was out of shape and had to take a break, but they had fun.  He did say he thought his leg was getting better.

HCT - 24.5, HGB - 8.2

March 15th

I just got back from Dad’s appointment with his kidney doctor.  Good news - his kidney function based on creatinine level improved slightly.  The doctor didn’t have the ultrasound results.  We chatted a bit as the doctor explained there was still some concern about protein in his urine.  The doctor had done some tests to try and determine why but had not come up with anything definitive.

Dad’s BP was 158/79 with a pulse of 60.  The creatinine went from 2.9 to 2.4 (1.6 is high normal).  Of the proteins found in Dad’s urine he said none of them were “abnormal” but that they were 3 times higher than they should be.  I asked if it could be from muscle breakdown and Dad asked if diet played a role.  Both answers came back “no”.  The kidney has a barrier where it can filter the blood to clean it, but should leave the protein behind (to stay in the blood).  Dad’s barrier isn’t doing its job and the doctor is looking to see if he can do anything to improve that situation.

As we were wrapping up, the doctor asked about how Dad was feeling in general.  Dad came by the store for a visit yesterday and he spoke about his lack of energy interest in doing things (although he went to the community concert by himself last night and Kyle’s baseball game the night before).  Anyway, I brought this up to the doctor and mentioned his anemia.  The doctor then talked about treatment with a drug called EPO, a hormone secreted by the kidneys to stimulate red blood cell production.  Red blood cells carry oxygen.  I have asked Dad’s regular doctor (Nichols), his PA (Trevor), and cancer specialist (Mokabadi) about using this drug and they all said Dad was not “there” yet.  While not encouraging the direction, I’ve wanted Dad to try this simply for the improved quality of life I thought it might provide.  This doctor explained that there were risks such as stroke, if his body makes too many red blood cells, and tumor growth, which is why Dr. Mokabadi wanted to do more tests.  Dad would have to get a shot every two weeks and have his blood checked every interval.  I tried to stay neutral in advising Dad as we asked about the side effects and negatives to this approach.  There really didn’t seem to be many, besides the inconvenience of the shot frequency and blood tests.  If there is some underlying condition they have not discovered the EPO may aggravate that condition.

Even if that is the case, I still believe this is the correct course of action.  Dad is slowing down both mentally and physically and I believe it is due in part to the lack of oxygen.  I’ve seen him climb the hill to tennis and have to stop halfway.  He mentioned that he parked in front of our store to walk to the concert and the walk back exhausted him.  This is a non-invasive treatment that may offer some benefit.

They were not able to start the shots today.  They have to get approval from Dad’s insurance carrier.  We will keep you posted on the progress.

May 17, 2011 Update

We saw Trevor the PA at Dr. Nichols office. He had some interesting insights on Dad’s health issues. After describing Dad’s health status before the biopsy and his status now, he did seem to agree that the information we could have determined from the tests was not worth the procedure. His feeling is that a bone marrow biopsy is needed and the two main diseases that could be determined from that are not treatable, so why bother.

Dad’s wound is healing nicely. The HH nurse yesterday had to use the wooden end of the Q-tip to get the wicking material in. Tonight we remove the wicking material for good and see what happens. The HH nurse is scheduled for tomorrow morning and I’ll be there to see if we might be able to discontinue that service. Dad is anxious to get back to tennis and with the nurse coming M-W-F that is difficult. The PA prescribed one more week on antibiotics as insurance against another abscess.

On the anemia front, while Dad’s numbers are low, they are not catastrophic. If they do get low enough for him to have a transfusion, then a nephrologist (kidney specialist) would prescribe epoitein(?), a hormone to stimulate the bone marrow to produce more red blood cells. The PA’s feeling was that the anemia is caused by Dad’s renal insufficiency. We will monitor Dad’s Red Blood Cells and kidney functions every three months. As for future doctor visits, he has one with Dr. Chang near the end of the month. No more with Dr. Nichols (unless the wound starts acting up again) for three months.

We got to spend some time in conversation while waiting for the doctor. Dad says he is eating well. He is feeling good and wants to get back to his routine. I think he is looking forward to living and not constantly going to the doctor. He is looking forward to the Boston trip in the fall. And, as a by-the-way, feels that Boston Rob did a great job on Survivor and deserved to win the million bucks.

Love,

John