Sept 11, 2012 Doctors and Settling in to Rosewood

Tom and I spent the afternoon with Dad today.  We got to Rosewood about 9:45 and left about 3:30 today.  When we got there Dad was sleeping in his bed, though he was dressed in shorts and polo shirt.  He said he had gotten up and ate breakfast and came back to take a short nap before the doctors appointment.  We got Dad up and had him brush his teeth.  He was unable to put toothpaste on his toothbrush, so I helped him out.  The rest he seemed to do well, including getting out of bed with the use of the walker.

He did walk to the car with the aide of the walker (this is an older style walker with wheels on the back).  We got him to Dr Trang's office and unfortunately had to wait about an hour to see.  We did weigh Dad in before seeing him and he weighed 166 lbs.  Dr Trang asked Dad how he was doing and Dad said he was doing better.  Dr Trang looked in Dad's ear and said that it was the best that he has seen with Dad.  He asked about what Dr Nguyen was doing and we told him about the pet scan and possible chemo treatment.  He told Dad that he would call Dr Nguyen and Dr Heidari to make sure all three were on the same page.  He said he wants to see a minimum of another two weeks of antibiotics and would probably bet his house that Dad would need at least another month past the 25th.  He wants Dad to have a gallium scan around the 25th of Sept.  He said the gallium scan would highlight any infection that Dad has in the bone area of his skull.  He mentioned that he would prefer holding off of chemo until he is sure they have eradicated the infection, he is concerned that infection may come back. 

After Dr Trang's visit, we took Dad to the Garden Spot for lunch where Dad had soup for lunch.  He also enjoyed chocolate pudding, but not much more.  We then took Dad back to Rosewood, getting back about 1:30.  He wanted to take a nap. 

At about 2:30 we met with the staff at Rosewood, with representatives from therapy, food services, social services, nursing and activities.  We first discussed how happy Dad was with Rosewood and we were too, but did have a few ideas that would make it better for Dad.  Most of the items were from Jim's list, great job Jim.  We went through Dad's ailments, which included the SBO, Cancer, facial paralysis and stomach issues due to the antibiotics.  We talked about the food that Dad was being served and they are going to move Dad to mechanically processed soft foods.  They are going to start checking with Dad more to see if he is having diarhea and if so suggest the Imodium AD.  They are going to have evaluated by a Speech Therapist, to see if they can help with his speech due to the facial paralysis.  Also the OT will already had reviewed how he gets out of bed and told Dad that he was doing good.  They are going to observe him brushing his teeth and give him a routine that he can follow for brushing his teeth.  We also reminded all of them that Dad cannot hear out of his left ear and cannot see out of his right eye.  That Dad may not always fully understand them even when he says ok or nods in confirmation.  I talked about the importance of having Dad repeat back any important instructions or information.

OT will review Dad to see how he does dressing himself and the nursing staff will provide assistance to Dad in putting on clean clothes every morning.  We also let them know that Dad prefers to get up at 7:00 am so that he can participate in breakfast and all meals in the main dining room.  We reviewed all of Dad's medication and we questioned the stool softener and talked about the lacri lube and eye drops.  They said that Dad was getting eye drops every two hours, but when we asked when he got his last eyedrops, they said it was 1:06 pm.  We told them that he was at the doctors at that time and she said, oh sorry it was 11:06 am.  We said he was still not here and she said she will have to get back to us on when he had the last eye drops.

The meeting was very helpful in clearing up misunderstandings and the staff was very responsive and eager to help, often suggesting what they could do when an issue was brought up.  We did forget to mention the issue around response time when Dad needs to use the bathroom.  We will talk with the head of the nursing staff tomorrow.

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

July 31 Update

On Tue, Jul 31, 2012 at 3:36 PM, cate praggastis  wrote:

Okay... I will see if I can fill all that went on today... so far..

First off, when I got here yesterday (Monday), both Tom and John had told me about the droop on Dad's face. John had done some research and suspected Bell's Palsy. Today, specifically this morning, when dad woke up.. he was distraught.. his speech was slurred and his droop was very pronounced. He said.. "I think I have had a stroke". I said okay, called John .. who called Tom.. I got some food in Dad's belly while they were talking.. and then I called Dr. Nichols and took Dad there. We saw Trevor, the PA (smart guy). He suspected Bell's Palsy right away because of the multiple involvement of Dad's eyes and mouth. We have an MRI at 4 pm to rule out stroke.

Trevor had blood drawn to find out if Dad has a virus. Since he has a history of herpes (cold sores), it is suspected that the virus is acute and causing the Bell's. We see Dr. Nichols again tomorrow at 10.30 am for the results. In the meantime, he (Trevor) put dad on Prednesone and Valtrex, which would help with the virus and eventually work on the Bell's Palsy.

In addition, because Dad cannot close his left eye.. Trevor ordered Lacri-Lube Eye Ointment. There is concern that he MUST lubricate the eye regularly, to prevent blindness.. since he cannot blink at all. He has to sleep with his eye taped closed. I worry this might offset his balance a bit.

Dad cannot chew on his left side. He ate eggs and a bit of cottage cheese last night, and some watermelon.. and had 1 egg this morning. He had some Ensure this afternoon.

We then went to see Nguyen as well this afternoon. Dr. Nguyen has a good manner with dad. He was concerned about the Bell's and the virus.. so he has suspended any treatment of CHEMO until the results are confirmed and dad is feeling better. He does NOT want Dad taking the Augmentan that Dr. Rose prescribed. He thinks it is playing havoc on his stomach and not working on the ear infection, which is likely in the mastoid bone.

Which brings me to Dr. Trang (the ear surgeon). Dad has an appointment with Dr. Trang on Tuesday, Aug. 7th at 10:30 in the morning. (The office just called to confirm that time, Tom - so whatever you have from Dr. Rose is not current). Dr. Nguyen will confer with Dr. Trang AND Dr. Nichols office on the best road to travel. (stay to the right of the building, go around the back side and enter through the door that says "Surgery Center")

Dr. Nguyen was in support of the Trevor's plan for treatment for the Virus, also felt like it was Bell's Palsy, has piggy backed on the blood draw from Dr. Nichols office today to check his vitamin levels and anemia. He was kind and gentle with dad and could see that Dad is distraught and depressed. I suggested a mild anti-depressant that got me through the loss of mom... It is called Lexapro. Dad will begin taking it tonight. Dr. Nguyen felt it might help Dad. He wants Dad to feel like he can move around, get around and have a bit of energy. He is a very compassionate doctor.

Dr. Nguyen wants to ensure the Furosemide and Allopurinol are STOPPED. He said to give Dad 500 mg of Tylenol every 6 hours instead of the Tylenol with Codeine, as that is making him too tired and could be exacerbating his depression - plus Dad hates how he feels on it. He said Dad SHOULD not take aspirin or Advil.. which I didn't know.. so that was a good update for me.

Dr. Nguyen said, after he looks over all the tests and confers with the other doctors, he needs to see Dad next week (Tuesday, August 7th at 3pm)- Tom or John.. you can likely change that if you want to set them up back to back with Dr. Trang. He, at that point will discuss how to proceed with the Chemo, and the possibility of putting Dad on and appetite stimulant to enhance his food intake. I had a friend tell me that she is on medical marijuana in pill form.. and that it has helped her mood and her appetite, while also controlling some of her pain from the chemo and infections that she has. She is also undergoing chemo for Cancer, but not lymphoma.

Dad said everything tastes salty, that he always has a salty feeling in his mouth.

Dad is resting now, for about another 15 minutes, then we will go to the Radiology place for the MRI. We will not know the results of that until we meet with Trevor tomorrow morning. Let me know if you have any questions.. or if it seems like I left something out. Love you all...

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