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.