Video Tribute to Dad is posted on YouTube

At the lunch after Dad's funeral, we presented a slide show tribute to him. That is now available on you tube.

Thank you all for your support in these trying times. It is much appreciated. With our large family returning home, it is now much quieter here. Though saddened, we are doing well. Mom soon will be off to Arizona with Carla for a few weeks around Thanksgiving. We are winding down activity at the house for a while.

It's been a pleasure to meet so many of Dad's friends. It's great to know how special a person he was to you all.

-- Bob

Funeral Monday at 11:00 (plus additional info)

Dad's funeral will be Monday, November 16th at 11:00am at his church, Saint Bernard of Clairvaux. There will be a lunch afterward at the church. Rosary will be said Sunday at 7:30pm at the church.

The Parish of Saint Bernard of Clairvaux is located at 4001 East 101st Street in Tulsa between South Yale Avenue and South Riverside Drive.

The church web site is at http://stbernardstulsa.org/

In lieu of flowers, donations may be made to Kairos Prison Ministry of Oklahoma, where Dad had volunteered extensively or to Maryknoll Lay Missioners.

Kairos Oklahoma
PO Box 54383Oklahoma City OK 73154-1383
http://www.kairosoklahoma.org/

Maryknoll Lay Missioners
PO Box 307
Maryknoll, NY 10545-0307
http://www.mklaymissioners.org/
(800)867-2980

Several out of town family members have made reservations at the Tulsa Holiday Inn Express. The hotel have made rooms available at $73 per night if you tell them you are part of the Minich party.

Tulsa Holiday Inn Express
9010 E 71st Street South
Tulsa OK 74133
(918) 459-5321
http://www.hiexpress.com/h/d/ex/1/en/hotel/tulwh?&dp=true

If you have photos of Dad you would like to contribute to the family, you may email them to David Minich dminich@datamovers.us.

-- Bob

Funeral Monday at 11:00

Dad's funeral will be Monday, November 16th at 11:00am at his church, Saint Bernard of Clairvaux. There will be a lunch afterward at the church.

The Parish of Saint Bernard of Clairvaux is located at 4001 East 101st Street in Tulsa between South Yale Avenue and South Riverside Drive.

The church web site is at http://stbernardstulsa.org/

-- Bob

Farewell Dad

Dad passed away about 11:30 today. Mom, myself, and Christie were by his side holding his hands.

Last night he was nearing the limits of what doctors could do for him. We had called the family to Tulsa to be with him today and to ensure that his passing would be peaceful and respectful of his wishes. His body just wasn't able to hold out any longer. He was not in any pain.

We will post plans for memorial services as soon as we have them. For now, we anticipate a service sometime Monday.

Thank you all for your support and love for Dad and family. He was an amazing man. He lives on in the hearts of everyone whom he loved.

-- Bob

A rough night

Dad had a rough night last night. When I visited him after work, his oxygen levels were lower (mid 80s) than the doctors wanted so they adjusted his ventilator to give him slightly larger breaths of the pure oxygen he was already breathing. At the same time, his heart rate was fast and irregular. It varied between 140 and 180 beats per minute. After performing an EGK, they gave him some medication for the heart rate and did another adjustment to the ventilator and by this morning his heart rate was down to 110 and his oxygen levels were up to 93%.

Overall this seems like two steps backward and then one forward.

We are working on setting up a meeting with Dad's doctors to evaluate how is doing and where we need to go from here to meet Dad's wishes.

-- Bob

Ups and downs

I think Dad looks a little better today. The swelling in his arms seems to have gone down a bit. His breathing is steadier and a bit slower paced. Today's nurse reported that he gets agitated when they mess with him. His breathing would speed up as did his heart. They had upped his oxygen back to 100%. She thought he might be in some pain. A little morphine every few hours has helped calm him down. Tonight's nurse said she would look at trying a reduction in the oxygen levels over night and see how that goes. While I was there, it seemed like his heart would occasionally speed up a bit to 130 beats per minute and then slow back down 115 or so. That is different, but I didn't see any other changes in breathing or noise or movement that went along with it.

Before I entered Dad's room tonight, I was getting ready to put on a gown and gloves tonight when the nurse told me that Dad was no longer in isolation. Whatever nasty bug they thought he might have apparently hasn't shown itself recently. I think about 1/3 of the ICU was under those isolation protocols. I'll count no sign of the nasty stuff as one step in the right direction.

-- Bob

A little bit better

I just got back from the hospital. I sat with Dad for a couple hours. He's doing a little better today. They've lowered the oxygen level in his air to 80% and he's breathing a bit slower (28 breaths per minute). They are still giving him plenty of the two antibiotics they are using. His other vitals continue to look fine. The lung sputum and blood cultures they started the other day haven't shown anything yet. His arms are still swollen but he's better than yesterday. His latest blood sugar reading was decent at 184.

Today I held his hand a while and let him rest quietly. He's got the radio going if he wants noise. I said hello but didn't get a big reaction.

We're back to small steps in the right direction.

-- Bob

Hanging in there

Dad has had a bit of a setback Friday and today. They've currently got him breathing 100% oxygen and he's breathing faster than they'd like (33 breaths per minute second). His forearms were swollen enough that they removed his wedding band. Mom saw him Friday and now has the ring on her charm necklace. My understanding is he's still fighting the pneumonia, which they believe is caused by a fungus. Today they added in another drug to help fight that. Fungal infections in the lung apparently are hard to fight and take longer to show positive results, but we are hanging in there. Dad's blood pressure and blood sugar are doing OK.

Today the nurse gave Dad a bath and took a new sputum sample from his lungs. Those tests take at least 24 hours to get results and up to 5 days.

The nurse looked at the results of Dad's CT scan of his head done the other day. The writeup said it did not show any significant change from previous scans.

-- Bob

Still hanging in there

Today is another steady day. He had the same day nurse today. The only thing new is they did a CT scan.  The results had yet to be interpreted by a doctor so we don't know what, if anything, was found there. Dad's primary care doctor makes the rounds early in the morning so I expect they'll have something to say (even if it is "no change") at that time. His vital signs are still good apart from the lung problems. His blood sugar was a bit better controlled today, but it still goes up and down on its own whims.

The nurse said they tried reducing his sedation again today, but when they do that his breathing speeds up to an unhealthy rhythm. After seeing that, they reset it back at the higher level. He tried reducing it a bit while I was there and Dad did open his eyes halfway for me and then explored around his mouth with his tongue. I wasn't able to get yes/no answers so I didn't push my luck. I relayed some the the comments from this blog to him.

Mom is slowly gearing up for her trip to Arizona. She's thinking ahead to grandkids' birthdays and mailing deadlines, not to mention getting her stuff packed. I think she could have had a career in logistics for the military.

Thanks for the wonderful blog comments. I appreciate them.

I'll let you know how the CT comes out tomorrow.

-- Bob

Holding steady

Today is much the same as yesterday. Dad's vital signs are holding steady. He's breathing fairly quickly and his heart rate is a bit on the fast side. They don't want those to go too high and that's why the keep him sedated. His sedation level is about the same as yesterday at this time. Later last night they had turned it up a bit higher but they have been slowly reducing it (baby steps) since then. They were able to slightly back off on the oxygen in the air he's breathing. His blood sugar is up there in the 200s but they are keeping an eye on it.

I talked to Dad briefly tonight. He started to open his eyes a bit but he seemed pretty out of it. While I was there, the nurse came in to clean and moisturize his mouth. It looked like he was keeping his mouth open for the dentist until that was done. He's got his radio going, but other than that it is pretty quiet in his room.

We are still looking to make progress on clearing up the lung infection. They are continuing with the antibacterial medication prescribed by the infectious disease specialist.

He is digesting all the food they give him, so that is good. The nurse said his lab work looks OK apart from the direct effects of the lung infection.

If you didn't catch my added comment to the previous post, I *do* read your comments posted to this blog. I usually won't reply, but don't let that stop you from posting a comment.

-- Bob

Tuesday T

I am just back from the hospital. It's been a steady day for Dad. The doctors are still working on clearing up the lung infection. They had an infectious disease specialist check him out today. He didn't find anything new but he did add a different antibiotic to the several that Dad is getting. They are giving him insulin with his fluid drip to help keep his blood sugar levels under better control. That seems to be working well.

This afternoon the nurse had been lowering Dad's sedation level a tiny bit at a time. He said that he tended to start breathing too fast when they tried that the previous couple of days and when that happens they have to up the sedation to ensure the rapid breathing doesn't cause problems. I was able to talk to Dad tonight. He opened his eyes for me when he heard my voice but he wasn't able to give me firm yes or no indications to questions I asked. I told him about things going on with family and I held his hand for a while. The last couple of times I visited him, he was too sedated or sleepy to respond to me.

The nurse said on Monday they did a "sedation vacation" which is where they stopped the sedation altogether to see how the patient responds. He said they didn't try that today. Overall, Dad's vital signs are still doing good. They are giving him a little more oxygen in the air he breathes and they are keeping a little more constant pressure in his lungs. That helps keep his lungs open while he fights the pneumonia.

They had a TV going along with the radio when I got there so I stopped the TV and turned up the radio a bit so he could hear it more easily. Dad wasn't ever much a fan of TV and I don't think he appreciates game shows and commercials very much. I tried to get the classical music station going but I can't get good enough reception in his current room so I left the talk radio going. The nurse said they like to keep something like that going so a patient has an idea of what time it is as they drift between wakefulness and sleep.

Hopefully Dad's lungs will get better so we can start getting him off the ventilator and the drugs that go with that. I was glad that he knew I was there.

Mom is still doing OK. She's looking forward to visiting Carla for a few weeks around Thanksgiving. She keeps a schedule that would feel busy enough to me.

-- Bob

Another slow day

I just got back from the hospital this evening. They still have Dad pretty sedated. His vital signs are good. They were able to get a sample of a bacteria in his lung and they have prescribed an antibiotic to target that. They are up to his target for feeding and he is doing well with that. They are keeping the oxygen he breathes slightly higher to keep his blood well oxygenated. His blood sugar was a bit high today (about 300) so they are going to up the dose of long acting insulin he gets at bedtime.

I am a little frustrated that I don't get to see Dad interact, but they are keeping him quiet to help his lungs get better and keep him comfortable. The nurse early this morning had him awake enough to respond to questions with yes and no. Dad was able to say he isn't in any pain. Then they raised the sedation a bit to keep him from being agitated and working against the ventilator.

I look forward to Dad getting past the lung problems so he can interact more and work on getting better.

-- Bob

A sunny day Sunday at rest

Dad's still doing OK. They gave him a bit more sedative last night to help him sleep and he's still pretty out of it today. His vitals are OK and stable but they found his hemoglobin was low enough so they are going to give him some red blood cells and have turned up the oxygen percentage a bit in the mean time. I sat with him for an hour and a half to see how things were going. It was calm and quiet. They checked his blood sugar while I was there and it was good enough (140) that he didn't require insulin.

He had the same nurse taking care of him today as yesterday. He's still getting antibiotics to make sure no bacteria starts growing in his lungs form the recent aspiration problem. He had some tender skin where the previous tube in his mouth was held in place with very sticky tape, but otherwise is looking good. It has now been 24 hours since the tracheotomy so the wound from that should be less fragile.

At this point, we are just waiting for Dad to recover from the recent lung issues and then we can work toward getting him much healthier. Chris and Kevin are headed back to Dallas. It was good seeing them again. We even had some trick or treaters at Mom and Dad's house, though at a few dozen kids it was not too much of a crowd. Today is beautifully sunny. It was cool first thing in the morning but it's like a spring day today with no clouds but the trees are all changing colors.

-- Bob

Tracheotomy is done, Dad is resting

They completed Dad's tracheotomy without any problems. It was a small surgical procedure that they did in his room in about 30 minutes once they had their equipment in place. The surgeon talked to us for a couple minutes after the procedure. We asked if Dad would be able to talk eventually with the trach tube in place and she said there are several different variations on the tube in his airway that can allow that. However, right now the priority is just to get healthier while his lungs are protected form anything falling down into them form his mouth.

They are making gradual baby steps to reduce Dad's sedation. They had him under for the procedure and they back off that slowly. They don't want him stirring so the incision on his neck has time to heal. They've restarted his feeding tube. The feeding had been stopped early this morning to make sure his stomach was empty during the surgery. His vital signs are all good. I expect they'll be working very gradually to ween him form the ventilator over the next day or two.

We'll see how he does day by day. Today went well.

-- Bob

Tracheotomy scheduled for Saturday

Dad has been resting today. While he is intubated they have him sedated. We have his radio going for him, but I believe he has mostly been quiet and restful.

Late tomorrow morning they will do the tracheotomy. This will protect his lungs by blocking anything in his mouth from going down his trachea. This procedure does not have to be permanent. When he regains the ability to swallow normally and has the correct gag/cough reactions to protect his airway, they can sew him back up.

While intubation (a tube through your mouth down into your trachea) protects your airway, it also requires sedation and prevents you from using your mouth normally. The tracheotomy should allow us to protect Dad's lungs while we work on getting him healthier in all the other areas, like recovering from Pneumonia and a long stay in hospital beds.

Dad's son Chris and grandson Kevin will be here this weekend. We look forward to seeing him.

-- Bob

Slow news is good news

Today has been a quiet day. We still haven't talked to the doctor that will do the tracheotomy, but we have a note in with the nurse to have her call us. Dad is doing good. He's been resting since he was intubated last night. It took a little bit of effort to get him settled but we stuck around while they got everything under control.

Mom and Carla went to see Dad a couple times today. We again informed them that he wasn't a fan of Fox news and switched off the TV and got the classical music on the radio going.

We hope to hear more from the doctors soon.

-- Bob

Another bump in the road

It feels like we've been at this point before, but it's a little bit different every time.

The doctors said Dad is definitely aspirating again. This means food, water, and normal secretions he has been coughing up aren't always being swallowed properly. Instead, junk gets into his lungs and that leads to breathing difficulties that we saw yesterday.

They don't really know for sure why he can't swallow properly, but to prevent further problems he needs to get a tracheotomy. That will block anything from going down into lungs. Doing that procedure will take some time (tomorrow or the next day) to get the right doctors lined up and scheduled. In the mean time, they are going to intubate him again to protect his airway. We talked to him earlier today to make sure he was OK with that and he said it was. They are working on that now. He will be sedated again to make him more comfortable with the breathing tube and ventilator.

The goal is to get him healthy enough to recover from the recent problems.

-- Bob

Doing OK so far

I've brought Mom home for the night. Carla is staying with Dad a while longer to see if we get any news on Dad's condition. He's back in the ICU resting. He's on the BiPAP machine (like a ventilator but with a snug fitting mask instead of a tube down the throat) to help out his breathing. At the moment he's getting 100% oxygen and his vital signs are good. When they brought him back from the CT scan, his blood pressure was a bit low (84 / 45). They got that corrected when they restarted his IV fluids and gave him a little extra boost for the time he was off the IV. The nurse said she would have called on the doctors if his BP hadn't come back up to an acceptable range with fluids. We'll see how that goes tonight.

We didn't get any news about what happened in the respiratory care unit that landed him back in the ICU. He's been responsive to us and the nurses, though he can't talk over the BiPAP. He seemed pretty tired. We held his hand for a while and told him to go easy on the nurses tonight.

Some of this overlaps with comments I added to the previous post while I was at the hospital.

The nurse tonight said she didn't know when to expect results from the CT scan. If they don't ask for it with a high priority, it probably won't come back until tomorrow morning in time for the doctors' normal rounds.

We did learn this afternoon that they did a good job controlling his blood sugar last night and today. With a large enough dose of the long lasting insulin, he didn't need anything this morning or noon.

I'll post more when I know it. I'm headed to my place for the night and Carla will come back to Mom and Dad's house in a couple hours if everything is still going smoothly.

-- Bob

Back to the ICU

I visited Dad this afternoon after picking Carla up at the airport. He was doing OK then. Carla called a little while ago and said she got a call from the hospital that Dad's breathing had changed and that he was unresponsive. We don't know any more about him. They said they will put him back in the ICU and will probably put him back on the ventilator.

I'm on my way to the hospital now.

-- Bob

Working back to food

Today wasn't a huge day for Dad. He did get some more challenging food. The nurse said he got some applesauce, cream of wheat (it actually was on a glutten free menu, and no I don't understand how that is possible), and pureed turkey. She said he did better on the thicker food. He still coughs gunk up. He said he didn't fidget as much today because he was tired. Hopefully some better food will do him good and we can get him off the tube feeding.

Carla will be here tomorrow afternoon. I've already got a couple errands for her. It's finally and truly fall here, with chilly breezes and the leaves are falling off the trees. Dad still has roses on his bush and a good looking one in a pot in the window of his hospital room.

If these blog posts come straight to your email, please note that I any replies to Dad's email address do not go to me.

-- Bob

Out of the ICU

Dad has been moved out of the ICU and into the respiratory care ward. They would have moved him sooner had a spot been available. His nurse for today said they can do pretty much everything they did in the ICU short of having patients on a ventilator.

After the move, they gave him some chicken broth. He seemed to do OK with that. He still has the tube feeding in place, but that's another step in the right direction. He's still coughing up gunk, which is a good thing. Dad seemed a bit more tired today. Dad asked me to read him the blog messages so I'm going to print some of those to bring him tonight.

Dave is headed back to Phoenix tomorrow and Carla will be back in town Wednesday.

-- Bob

Getting better all the time

Dad is making progress. I can see it's a long road ahead, but he's definitely going in the right direction. Any and all cancer treatments are on hold until he decides otherwise.

I visited Dad this AM with Mom and Dave. Dad is less tired but still pretty weak. He's more alert and better able to communicate. He's been doing a lot of fidgeting with his hands and feet. I think he is testing his finger tips with textures of the blankets and building up strength in his arms and legs. We talked to yet another doctor today who is standing in for his primary care doctor. He checked the results of Dad's swallowing test earlier this week and said it would be OK today to try giving him some ice chips today. He seemed to do OK but didn't have too many. He does a good job of coughing up gunk in his throat so I think he's getting stronger there, too.

They still want to move him to a respiratory care ward, but there are only 6 beds available there so we are still waiting for a spot to open up. He's not really fit for a regular hospital room yet. His vital signs are all good. His blood sugar today was a bit high at noon (about 280) so he got an insulin shot. They have to figure out a good dosage schedule for him as his needs change. Lord knows we had a tough time of it.

Dad is still talking in a whisper. I'm hoping we get him using his vocal cords soon so he can communicate better. He's definitely more alert and can handle longer exchanges. He does even better when he doesn't have to speak.

That's all I have for now.

-- Bob

Slow progress

I talked with Dad's primary care doctor yesterday morning and just now as well as his radiation oncologist yesterday morning. Right now Dad is slowly recovering from the pneumonia and time on the ventilator. He's getting more alert over time but he's still physically pretty weak after spending a lot of time in bed. He wants to communicate more but has trouble picking words and getting them out. This morning, Dad's blood sugar was high (about 300) probably due to increased food and steroid use.

Dad's son Dave is in town from Phoenix. We went to see Dad last night when he got here. I think Dad was a bit more lively and communicative. When we entered his room, he had a pen and pad of paper in hand but was sleeping. He's not coordinated enough to write something we can read yet. His voice is still pretty weak, but it's much less gravelly. While there's not much for us to do right now caring for Dad's immediate needs, Dave can help Mom out around the house and get a chance to visit with Dad. Mom is keeping up her busy routine thanks to wonderful friends helping out with transportation.

This morning, the primary care doctor told me that they are looking at getting Dad into a respiratory care unit as he gets well enough to leave the ICU.

I talked with Dr. Stewart, the radiation oncologist, yesterday morning for about 20 minutes. We were concerned that they appeared to want to get Dad back in for radiation treatments. He doesn't think Dad's fogginess or difficulty swallowing is a result of the radiation. He also says that the last MRI they obtained (before Dad got pneumonia) showed the tumor was declining but still there and the swelling (edema) around the tumor had been reduced. He said they design the radiation dosage to kill off a percentage of tumor cells with each treatment. If you do the full course of treatments, there should be less than one tumor cell remaining. Because Dad still has 5 treatments remaining, he'd expect remaining tumor cells to be present. I requested that Dr Stewart see Dad for himself. (Up till last night, they'd been following his condition with the records in the computer at the hospital.) He did get to see Dad and said they would give him more time to recover from his current state before revisiting the possibility of radiation treatment.

We let the doctors know that it is our understanding that Dad wanted to stop the treatments. Unless and until he says otherwise, that's what we want to do. From his ICU nurse yesterday, it seems that's what Dad told Dr. Stewart as well.

Keep praying for continued progress.

-- Bob

A slow day

There's not much new to report today.

They had a speech therapist do a swallow test with Dad. Apparently his swallowing wasn't very strong, so they are keeping him on the tube for feeding for now.

They had been using a canula to supply oxygen to his nose, but they switched to a mask because he was breathing as much through his mouth. The said tonight they'll put him on a BiPAP again to try and get his lungs clearer. He coughs junk up but they think a good deal of it just goes back down his lungs because he isn't swallowing well. I Mom with me when we visited tonight. Dad gets tired pretty easily and talking helps make him cough.

According to his nurse, they were thinking of taking him to a radiation treatment but they decided not to based on the coughing... when doing the radiation treatment, his head is trapped in a tight fitting basket. I can't imagine him flat on his back for 15 minutes and needing to cough but not being able to move his head at all.

Keep praying for his continued recovery. There's miles to go before we sleep.

-- Bob

Off the ventilator

I just got back from the hospital. Dad is now off the ventilator. His nurse says he is doing great. He still has the feeding tube down his nose. She said they'll probably do a swallowing test tomorrow to see if he will be able to take oral feeding. Right now his voice has dropped a couple octaves, but she says that is to be expected after being on the vent. His oxygen saturation was 95% breathing the same air I do, which is good. He sounds like he has a fair bit of phlegm. He can talk, but it's a lot of work for him and gets his throat churned up.

The nurse said if all looks good tomorrow, he might be out of the ICU and into a regular hospital room.

-- Bob

New for Monday

Dad is now completely off the blood pressure support medicine. They gave him some red blood cells, too. His vital signs continue to look good and steady. Today's nurse said they will start the ventilator weening tomorrow and that he was at "minimal" sedation.

While I was there, he appeared to be sleeping so I let him rest rather than try to stir him. They are playing his radio for him, which I know he enjoys when at home.

-- Bob

Steady progress

I just got back from visiting Dad with Mom. I got to talk to his nurse for today. She was working on paperwork as her shift was coming to an end.

She says Dad is doing very well. She said Dad was almost weened from the blood pressure supporting drug, but she didn't want to stop that just before another shift comes in. His sedation has been reduced a bunch and Dad is more alert. He was better at looking around and could motion confidently with his arms, though playing charades to understand him is a bit tiring on everyone. He's still going through a course of antibiotics. She said the lung doctor wanted to start the process of weening him from the ventilator tomorrow. This involves change the machines operating mode to let Dad be more responsible for starting breaths and, eventually, doing the work himself. He's already taking more breaths than the lower limit set on the machine (20 vs 10 breaths per minute). After he does his own breath control for a while, they'll do an arterial blood gas test to see how well his own breathing is doing. If that looks good, they'll be able to get him off the vent. I'm sure he'll appreciate that.

They're doing better at controlling his blood sugar. The nurse requested medications be administered with straight saline solution instead of glucose (sugar) solution, and that should help keep his readings under control. In any case, they are are doing better at that than could at home.

She did say he might get some red blood cells transfused tomorrow to help out his his hemoglobin counts on his blood work. Otherwise, his blood is doing good.

All his other vital signs are steady and good. She said he's a gracious patient. However, she corrected me and said he is not an "easy" patient due to lots of IV bags to manage.

I look forward to more good progress.

-- Bob

An update on Dad for Saturday

This is Bob again.

I visited with Dad earlier today. While I was there, he was resting peacefully. He's sedated due to the use of a ventilator but was able to shake his head or nod to respond to questions. When I got there, the Fox news channel was playing on the TV with the speaker on a control near his head. He's not a fan of Fox, so I set up his clock radio to a station he likes and stopped the TV.

While I was there, a respiratory tech did a routine procedure that makes him cough and allows them to draw up crud from his lungs. You or I could just cough that stuff up but with the ventilator, you need some help.

He's still on a low dose of a drug to keep his blood pressure up and they have a standard course of antibiotics they're using to treat the pneumonia. His vital signs are very stable. His blood oxygen levels are great (99 and 100) while breathing 40% oxygen. (That's about double normal air.) They have a feeding tube in place so he's getting nutrition that way. They are still working at lowering his blood sugar levels, which were just under 200. At home, he'd wake up with low sugar and then be high to very high at lunch, dinner, and bedtime. The doctors the steroid that helps prevent swelling in the brain (due to radiation and chemo treatment) often makes the blood sugar hard to control.

We have some beautiful roses from Dad's garden in a vase in the window. The room gets good indirect sunlight so you get a good sense of day and night.

I brought Mom to see Dad last night for a short visit before we had dinner. He was apparently a bit more sedated than today as he wasn't responding to us. We held his hands for a while and talked to him. Today I told him about a family birthday party for Emily.

Please keep Dad in you prayers. Dad has an amazing set of friends that care very deeply for him.

-- Bob

Taking the next step

We heard the lung specialist this morning. He says Dad definitely has pneumonia. He believes the cause has been aspiration. My understanding of his explanation is that food and or liquids have been going down into Dad's lungs when he eats and drinks. Based on a CT scan of Dad's chest done late last night, he thinks this must have been going on for several days. He said the best way to treat his entire condition (pneumonia and aspiration) would be to intubate him. Using a breathing tube down his throat would prevent anything else from slipping down his throat and also provide better control of his lungs to battle the pneumonia most effectively.

We weren't sure Dad would want to do that so the nurse told him what that doctor wanted to do and asked if he wanted to do that. He said he did. Because having a breathing tube is uncomfortable, they have also sedated him and will setup tube feeding. They said they will wake him up briefly once a day to check on him.

He is now sleeping peacefully. Carla and I are at Mom & Dad's house resting. We are only minutes away and the nurse will call us if anything changes.

The goal now is to clear up the pneumonia. This is expected to take several days. His condition is still critical, but he is good hands. Please keep praying for him.

-- Bob

Fighting for his life

This is Bob writing again.

Dad is currently in the the intensive care unit fighting against pneumonia. He was not feeling good Thursday morning and did not want to get out of bed. We had a nurse come for home health care and when she checked the oxygen level of his blood, is was dangerously low so we called an ambulance. We spent a long time in the ER with an excellent nurse who handled Dad very much like an ICU nurse while they found an ICU bed for Dad. We are apparently into flu season already and Dad's case was a high priority case among several requiring ICU beds.

With oxygen and a little help for breathing, Dad's blood oxygen levels are now good. While in the ER, he was able to take some dinner (a bit of chicken broth) and take some of his regular medication. They are working to keep his blood pressure acceptable while using a drug to help draw water away his lungs. It is a delicate balance.

When I left the hospital about 1:00am, Dad was settled into the ICU room and the ICU nurse was up to speed on his previous medication orders and recent history. As I post this, the ICU nurse reports Dad's condition is holding steady. Ed's daughter Carla is staying by his side in the ICU while I am home getting some rest for the challenges ahead of us tomorrow and onward. The family is keeping in close touch during this time. Mom is at home with daughter-in-law Cindy and is doing OK.

We ask that you pray for Dad's healing and strength and comfort in this delicate time.

Bumps in the road

This is Ed's son Bob writing again.

It's been another busy week. Where to start? We have been caring for Dad at home. His sister Judy has returned to Michigan and we now have daughter Carla and daughter-in-law Cindy here to help out. I'm still here, too. Our focus this week is to continue to care for Dad day by day while work to comply with his wishes that we get him into a skilled care facility that will care for his health needs during and after the cancer treatment. While we had hoped Dad would improve enough to be able to handle the diabetes medication and testing himself, it is now clear that he requires help to safely manage the diabetes.

He is still quite tired and spends a lot of time resting. He's still getting his chemo and radiation treatments. He's been eating very well and hasn't had any pain or nausea. We've had some adjustments on the diabetes medication that have helped avoid dangerously low blood sugar in the morning. The doctors have reduced the dosage of a steroid he takes to reduce swelling in the brain. The doctors think the steroid is responsible for much of the difficulty with controlling blood sugar and is probably behind other side effects, like swollen feet. Dad is having good days and bad days. If the blood sugar in the morning is low, he has trouble getting on his feet and moving around. On the good days, he gets around well. He uses a walker to get around the house safely.

Dad is prone to moments of confusion. Monday night, we were finishing up with dinner with Dad out at the dining room table. We'd been having a good time with lots of conversation and he was very clear headed. We were confused a bit when he got out of his chair and sat on his nearby walker and then asked where his couch was. A couple questions later, we figured out he thought he was in his computer room where he spends a lot of time in his comfy recliner ("my couch").

We got him to the recliner to and decided to check his blood sugar again. Normally we check before each meal and again before bedtime. We weren't sure what the level should be right after a meal. While would have been pretty high for a before-the-meal reading (requiring a larger dose of insulin), it wasn't sky high, either. We called his primary doctor for advice. After relaying the story about confusion, they said the sugar levels weren't high enough to cause confusion so they said we should take to the urgent care clinic to have him checked out. We did that.

Thanks to the modern miracle of medical records, we got to give a medical history and complete list of medications to them. (Dad's got 5 different kinds of pill and two types of insulin.) After all that, they checked his blood sugar again (it was dropping by about 15%) and said due to complexity of his case, we needed to take him across the street to the full blown ER to have him checked to be sure there wasn't something going on. We rounded up our stuff and headed out to the St Francis ER. We got to give another medical history and story telling about what brought us to the ER that night. They checked his blood sugar again (still coming down). By the time it was all said and done, they found no significant change in Dad's condition and we could go home. They'd checked his blood (in two different locations), did an EKG, got a urine sample, and did a CT scan. It only took about 6 or 7 hours total. We left the ER about 1 am. Dad was pooped. So were Carla and I. Yesterday we had to skip defer the radiation treatment because Dad was just exhausted. Like snow days at school, they will add the missed day on to the end of his treatment schedule.

I'm not sure exactly what lessons we learned from this ER experience. I suppose one is that erring on the side of caution can also take its toll. Another is that visiting the urgent care instead of the ER is a waste of time and energy when you've got a complex case history.

The very last day of radiation should be next Wednesday. After that, he is done with radiation and gets a 4 week break from chemo to recover. After the break, the plan is to do 6 cycles of chemo-only for a week and then 3 weeks off.

We have had some home health care services recently to help Dad shower and provide some physical therapy. We have been keeping in touch with his doctors as we monitor his health. We are also busy filling out paper work to apply to good care facilities that can meet Dad's needs. The good ones all have waiting lists, so we will be getting his name on the lists ASAP. It would be hard enough filling out forms like these for myself. It's even harder to do it for a loved one. Thankfully, Dad is pretty organized.

On happier notes, Mom is doing very well. She is maintaining her activities with many friends helping her with transportation. With Cindy here, we also get Emily, her daughter, whose birthday is later this month. Dad and Emily were very glad to see each other again.

I think it will be another busy week.

-- Bob

A very busy week

This is Ed's son Bob writing.

It has been very busy the last week or so. The next week will be just as busy. Dad asked me to update the blog so everyone can get the news in his treatment.

Over the last two weeks, Dad had been getting weaker and more tired. He was able to handle less and less of his own care. We weren't sure exactly what was going on. A call to the oncologist on Saturday got us a recommendation to adjust one of Dad's medications. We also had Dad's sister Judy come to town to help care for Dad at home, make sure he got to his radiation treatments and doctors appointments, and keep a close eye on his condition. She arrived on a Sunday evening and took Dad to his radiation appointment Monday the 28th at which point he was too tired to walk. They had the radiation oncologist check him out and do blood work. Later that evening (just before dinner, in fact) the doctor called and said Dad's blood test showed his blood sugar was way too high at 600 (100 is normal) and he needed to go to the emergency room immediately.

The doctor called ahead to the ER. Upon Dad's arrival, they quickly got us through to the doctors. Ed, Judy and I spent all Monday night in the ER where they checked blood sugar again (it was then down to a still-alarming 400) and started him on an IV with insulin. About 11:00pm they said they were going to admit him to the hospital. It was about midnight when they finally had a room ready for him. The ER doctor told us that based on his history and current medications, Dad probably was headed toward diabetes already and the treatment (in particular a steroid used to control swelling in the brain that comes with radiation) had likely pushed him beyond his bodies ability to control his blood sugar. Over the next several days, Dad was extremely tired but gained some more energy each day. His blood sugar levels bounced around quite a bit but they seem to be under more control. Dad's energy levels are now headed back in a good direction.

Last Saturday, the released Dad from the hospital with not a lot more energy than a couple days before he was admitted and additional medications for the diabetes. Dad now requires regular insulin shots and blood sugar tests. While in the hospital, they resumed his radiation treatments. He has a couple weeks to go before the radiation is finished and he gets four weeks off of all the tumor treatment to recover.

Because of the level of care Dad now needs, we have had to face some tough alternatives. He (and family) are finding that some sort of assisted living center will best help him get through the remaining treatments while ensuring he gets good nutrition, regular doses of medicine, and a minimal amount of stress.

Dad's energy level is growing day by day. We are hopeful that he will be able to manage the insulin injections on his own. If not, we will need to figure out a way to make sure that he gets his shots and testing on a regular, 4 times daily schedule. This will be a very busy week as we work to get Dad's strength back.

We very much appreciate the assistance we have received so far. While he recovers, Dad is limiting his use of the phone and computer as they tend to drain his energy that he needs to recover.

I will try to keep this site updated more regularly as we get more news.

The Radiation machine

The picture left is the machine I have named Freda. The whole mechanism rotates 360 degrees aound me. Below is the  spaghetti mask that holds  me within a millimeter of where I am  supposed to be. Also is shown the operator console where she does the final alignment using Xrays before the machine starts zapping me.

The Radiation process

We got the radiologist to give us a little extra time.The process turned out to be quite interesting. It all starts when he gets a 3D MRI. At that point he has to come up with a strategy to paint the sides of the cavity where the tumor was with radiation, changing beam shapes, directions, and intensity. He starts this with a computer program that in his case turned out to be using 10 different Xray beams, and then the computer program simulates it and gives him feed back on how well it works. He does this several times to make sure he gets the results he is looking for. He showed us some of the plots. When he is satisfied with that he goes through a test run with the machine. This is done with some kind of a water vessel that contains sensors of the areas he is trying to hit. If that proves satisfactory they start the therapy. I was impressed how much planning work was in the process. I had accused him of being in slow motion, I was wrong.

The plan is for 33 sessions.

The Radiation process

I do use aloe vera

Update

I really didn't want to spend much on this blog, but it is the best place to answer the continual questions of ' how are you doing.".

I saw the surgeon this AM. He is pleased the way thing are moving. He says the protcol of radiation and temodar is the exact right one with proven results. I mentioned radiation burns on my body, and he says that it one of the meds causing that. I mentioned slight paralysis on the left side of my face, he says that it is weakness, not paralysis.

Tomorrow I get some time with the Radiologist.

I had said that I wouldn't get too much on this blog. I hereby change my mind, just once.

I am now into radiation and chemo and I am not sure yet what to look forward to. The chemo for me is to take a pill at night and I am not sure what to expect beyond that. I have noticed some things from the radiation like tightening up the skin on my face. My razor doesn't work as well and the barber noticcd it too. The nurse told me to use only baby shampoo and to use an aloe type of skin softener Also to use Ivory soap.

My energy level is very low, but everybody tells me to expect that. The Dr. tells me that will reverse in a few weeks.

Part of my problem is paralysis on the left side of my face. ONe disturbing result is trying to brush my teeth. I cant get all the food out. I can't feel it and find hours later that there are still bits of food there. The dentist says to use a rotary tooth brush and I think that helps.

The radiation sessions are nothings. They take11 minutes and I am out of there.

So that is a summary. Do not expect much more from me for a while.

Radiation has commenced

Today I met the radioloist. He had done a lot of work. He had a stack of 3D MRIs that showed the different beam strategies he was going to use. These were all run through computer simulation to make sure they were accurate and had no bad side effects. He said I may see some improvement in the paralysis in my face. He also may reduce some of the meds as things progress. He wants the chemo to be in my system for each radiation treatment. The drug store screwed it up and didn't have it ready for me today, rather tomorrow at ten.

They spent over 30 minutes lining up the machine, taking XRays to verify the alignment, etc. The operator has a ten screen console she operates during the treatment. This was a very precision process. They put a mask on me with sensors that the machine picks up to ensure alignment. Regular daily treatments will go a lot faster.

I will go in every weekday at 3:30 PM excluding labor day.

Finally some progress

I have an appt. with the radiologist 3PM Wednesday and he will start radiation about 3:30.

So little to say

The Radiologist seems to be in slow motion. I called them and they are to make an appt. for me Wednesday Sept. 1. Maybe I will finally meet the guy and find out in more detail what he is going to do. In the mean time I am doing fine

A Little More

A little more to say. The feeling in my hand and the left of my face was getting worse. The Dr. put me back on steroids till at least Monday and it definitely has helped. He figured some swelling was causing the problem. In the mean time the Radiologist wanted another MRI which happened this morning. He seems to be in no hurry to get the radiation started.

Regarding those comments that want more. This is not a diary for me. I will only keep you up to date on the treatments I am getting.

RADIOLOGY UPDATE

Very little to say. The radiologist did what they call 'the scan'. They gave me a thing in my mouth much like when dentist takes an impession, and fits me to a mask that looks like spaghetti. And they connected it to the mouth thing. The mask has alignment points for the machine. Then the machine runs a scan which is cat scan and records every thing and gives the DR, a picture. IN about a week and a half he will aim the machine, calculate dosage and they will call back and I guess set up a schedule When I go for the radiation, I put on the mask and the computer figures out every thing from there.

Don't look for anything here till then.

Had a visit with the Radiation Oncologist. Actually I will not see him till Monday after which I will update this blog. Monday I go in for what they call the scan. This where they take measurements, for a head fixture, feed parameters into their machine, set up levels, etc. A

After that I suspect I will have aschedule for the radiation. treatment. More MOnday

Neurological Oncologist

Saw him today. Interestingly enough he reserved a whole of hour of his time for Bob and me. He has a fellowship in brain tumors and seems to be up to date on latest therapies. Cutting to the quick, he explained that the follow up is necessary because microscopic remnants of the tumor are probably there and will come back in 5 years or so unless something is done. The 'done' will be radiation for 6 weeks concurrently with drug called Temodar. The Dr. says this is the current way of handling all this with minimum side effects. I meet the radiation oncologist early next week to get all this started.

Update 8/6

Meet with the surgeon this AM. He went over the pathology report and gave me a copy. I had an astrocytoma, anaplastic tumor. It was level three which in my words is low level malignancy. He said pulling it out there were tendrils so there is probably a little left. He was anxious that I see a neurological oncologist and I have an appt. with one friday , Aug 7. He said there would be probably chemo and radiation followup. They seem to be anxious to get right on it.

I have learned a little more from my primary care Dr. who read the pathology report. i see the surgeon. thursday next week. the tumor is a astrocytomas. Good reading on it on http://neurosurgery.ucla.edu/body.cfm?id=159. There are apparently four different levels and the follow up is to make sure they have it all. Stay tuned after Thursday

Nothing New

Went for my appointment, and this is the Dr'.s surgery day. His nurse pulled out the stitches and set me up for an appt. with him next week. I don't plan to add anything to this blog till after that.

THE SCAR

You wanted to see what the scar looks like here is: It raises a few questions. The question mark seems to be they were not sure what they found, or wondered if there was any thing in there. Or maybe they can't figure out what they took out.

He says it was a glioma brain tumor so I guess there is some more to learn.

Any way I am home, surgery on Wednesday and home on Friday, not bad! My life reesumes pretty normally today.

Wednesday I see the dr. and he pulls out the stitches. He says I can travel but here will be some follow up.

Dad released and home

Dad's been released from the hospital and is now home. He's doing great. He's got a followup visit for Wednesday to get his stitches removed. Looks like everything went well.

-- Bob

Wish he could have seen it

I took Mom to see Wicked last night. It was quite a show. Dad had tickets for it but timing just didn't work out for him. We stopped by before the show so Mom could visit with him for a while.

Dad's in a regular room now and he's doing great. We fished out a book from the things he packed so he could try reading at some point that evening. There's only so much TV you can deal with. I think Mom was happy to see Dad is still his old self. She recently ordered and just received a book How God Changes Your Brain. I'm not sure this is exactly what the author had in mind, but we'll keep an eye out for differences.

Dad's had several visitors and I think he's enjoyed the company. He's got a followup MRI scheduled for today. He called me just now and said if all goes well, they might release him today. Dad said lying down in the MRI machine is a good place to practice meditation. It certainly does a good job of drowning out the rest of the world with its repetitive and L-O-U-D noise.

I'll post another update when I get more info.

-- Bob

Ed's doing good

I stopped in this AM to see Dad. He was still in the ICU room but they've put away all the IVs and monitoring gadgets and he will be moved to a regular room on the same floor as soon as they get an open space. They changed his bandage while I was there and gave him a very sterile looking stretchy stocking cap to hold the new dressing in place. He has a bunch of sutures over his right ear that look almost like he got beaned with a baseball that left an impression of the baseball stitches.

It looks like getting decent food will continue to be a challenge. His two egg omelette was reportedly small enough to make one wonder about the size of the chicken laying the eggs. We'll see how that goes.

Dad's in good spirits. He hasn't been out of bed yet but they'll probably give him a chance to walk from his current room to the regular room. I'll stop in to see him this evening. Mom and Dad had tickets to Wicked (a musical prequel to the Wizard of Oz) for tonight, so I'll be taking Mom to see that. We're still aiming to bring him home Saturday.

-- Bob

Ed gets his own room

Dad is out of the recovery room and up the 6th floor neurological ICU for the night. They're keeping a close eye on him tonight to make sure there are no complications from the surgery. They can monitor his heart, blood pressure, and breathing moment to moment. He's alert and talkative if a bit groggy. Mom and I beat him up to the floor and waited for about 15 minutes while they transferred him and got him situated. They wheeled his bed down the hallway past our little waiting room and he was chatting up a storm. The let us in to see him shortly afterward.

For the moment he's on a clear liquid diet and maybe will get some jello. He's doing fine and he's all there. He's got a deal with one of the nurses to help ensure his breakfast menu gets filled out in enough detail that he gets some salt and pepper. Apparently if you don't specifically order every detail you want from the menu, you don't get it.

His nurse for the night (7pm to 7am) is Dave from Claremore. Dad was a bit horse in the throat, but I don't think that's a surprise after surgery when they intubate you to let the anesthetist control your breathing. Dad said he didn't have any significant pain and the ICU nurse is keeping track of how he's doing.

He was a bit tired so we left him around 8:00 to rest.

-- Bob

Surgery is done

Mom, Cindy and I were in the waiting room when Dr. Fell, Dad's neurosurgeon, came out to tell us the surgery went well. He removed everything he saw on the MRIs and the quick sample of the tumor they looked at during the surgery didn't look malignant. Dad's in the recover room now and will be moved up to neurological ICU in an hour or so as he comes off the anesthetic and then we can go see him.

Dr. Fell said they'll know more definitively about the tumor when they get a pathology report, which will probably be Friday. He said the tumor started in the brain (that's better than something that came from somewhere else) and it is a glioma. He said Dad might get to go home as early as Saturday.

-- Bob

Ed's Surgery

Dad was taken in to surgery at 1:40. We were at the hospital since 9:30 this morning and they had him prepped hours before. They say that the surgery schedules are guesses at best and it's better to keep patients lined up and ready to go rather than waste a lot of money having the surgery teams twiddle their thumbs waiting.

While we waited we had visits from a couple friends of Dad, his pastor, and Cindy and Emily. We even got to visit with the surgeon between his first and second surgery that day (Dad was his third) and he quintuple checked he was looking at the correct patient (every nurse asks the same name and birthdate question) and got out his pen and drew a lovely arrow on the surgery side of Dad's head. You just can't be too careful, I guess.

After they took Dad in to the operating room, I went to grab Mom and take her to lunch. I'm headed back to the hospital now to spend some quality reading time in their waiting room. Cindy will join us there.

The surgery is supposed to take around 3 hours. I'll post more when I find out and get a spare moment.

-- Bob

This is the last from me for a awhile. I am to be admitted tomorrow at St. Francis hospital in tulsa about 11 AM. Surgery is scheduled shortly after noon. Dr. says the opening will be about 2", two inches!. Oh well, just another hole in my head. Afterwards I go to neurology ICU and if I behave I can get out in a few days. His concern that during the surgery he doesn't do something to paralyze my left side.

He really doesn't know what is there, so there will be no definitive information till Thursday morning.

Bob will keep this blog up to date daily.

I have some new info.

The surgery will be about noon on Wednesday and they have it scheduled for three hours. I have to be there two hours ahead of time. I had another MRI this morning and apparently this connect to what the nurse called a brain machine that uses 3D images and guides the Dr. to the proper place on the brain. The preop at the hospital was mostly paper work, blood tests, an Ekg and watching the screen saver on the hospital's computer that reminds the operator to smile.

I am told I will go to neurological ICU after the surgery. The title of the surgery is called parietal crainiotomy with tumor removal. I have been told to expect to be in the hospital for about 4 - 5 days. In the mean time I am just going to take it easy.

Bob drove me all around today which finding the Drs office was the most difficult.

Nothing really new. I am not supposed to drive so i am learning how to be dependent on other people. I am not finding that easy.

We are supposed to be going to the Nute place on San Juan island the second week in august. I hope dearly we will be able to make it.

To bring you up to date I thought for the last month or so I was having Tias. After a Cat scan and a MRI, it has been determined that I am having seizures from a spot on my brain. Monday the 20th I get another MRI and then on the 22nd the neurosurgeon will go in a determine what it is and remove it. I guess that means another hole in my head. I will find out more after that.

I gave up and now have a blog. I thought with so much happening in my life lately this is a better way to keep people informed.