Update on the Captain and First Mate

It is truly a blessing to know Don and Jo Ann.  Having them home and in our Sunday School class was wonderful.  They continually glow with the joy and presence of the Lord.  I received this update yesterday.

GREETINGS PRAYER WARRIORS: We returned to Houston today after two blessed weeks at home. God blessed us in so many ways at home. Seeing our sweet family, praising God with our church family, and sleeping in our own bed are just a few of the blessings. God is so good!!!!!!!

We did blood work as soon as we could get to the Clinic. The platelets were 20. Thank God! We did not need a transfusion. Yea! We talked to the nurse and she said that she would talk to the Dr. tomorrow morning and call us about when to come in for blood work and meet with him. Pray that God will guide the Dr. in making the decision about whether to give the Captain another treatment or let us go home,
We do not know what is best and are putting this totally in God’s hands.

We are going to get some much needed R & R. Our trip home was wonderful, but very, very busy. We are really tired. Thank you all for your prayers and your loving concern.

God loves you and we love you too,

Captain and Mate

Feeding Tube Lessons

After writing about our family’s experiences with inserting feeding tubes into the stomachs of precious loved ones, I have now arrived at the point of drawing some conclusions and sharing what I have learned.  This discussion must be prefaced with the caveat that I am not a medical professional.  I don’t have all the information about feeding tubes, nor can I give advice to a family.  I can only share with you my personal conclusions on this topic.  In addition, it is entirely possible that what I write in the next two posts, might completely change in the next 5 years because of presently unknown future events.  We don’t know what the future holds for us and our family.

I have learned that sometimes a inserting a feeding tube is entirely appropriate.  When a person has a curable disease and needs a temporary way of getting nutrition and hydration, then by all means. put that feeding tube in.  If a person is otherwise reasonably healthy, has a reasonable cognitive ability,  understands about the need for a feeding tube, and is in favor of it, then, again, I think a feeding tube is appropriate.  If a person has a type of cancer that has taken away their ability to eat, but otherwise the cancer is moving slowly, and that person is still enjoying life, then with that person’s permission, put in the feeding tube.

On the other hand, If a person’s quality of life is very low, if that person is just lying in a bed, not able to communicate, recognizing no one, is ready to give up this life, or does not have the cognitive ability to understand the need for a feeding tube, much less make a decision about it, then perhaps inserting a feeding tube, would not be appropriate.  If that person is in continual pain and must be kept sedated to the point of not being conscious, then perhaps inserting a feeding tube would cruel, not kind.

Taking out a feeding tube is also a very difficult decision and should not be made without considerable prayer and discussion on the part of the family and family member if possible.  If a family member’s physical condition is one of pain and suffering, if they are unconscious, if they have no cognitive ability, or if they are ready to die and have expressed a desire for the feeding tube to be removed, then take it out.  However, if it is taken out, then, family, make sure that certain things are done, such as oral hydration so that your loved one’s mouth does not dry out.  It is your responsibility to see to these details so that your family member will then pass from this life into the next with as little discomfort as possible.

My Biggest Regret About Our Decision to Remove Mother’s Feeding Tube

I have discussed this regret in a previous post, but am going to write about it once again because it is a very important part of this topic.  For some of you it may also fall into the category of TMI (too much information) because it is rather gross, but nevertheless this information is also relevant to our discussion.

We place Mother in the hospital on the Hospice Unit Sunday afternoon.  The decision to remove her feeding tube was made on Monday and by late that afternoon, it was gone.

After my sisters and I said goodby to our Mother, we decided to ‘let her sleep the rest of the way’, by keeping her sedated.  We could tell she was in pain, and decided there was no reason to have her awake any more than necessary.

By Wednesday afternoon the effects from the lack of nutrition and hydration had set in, and I noticed the change in her tongue.  It was swollen, and had a hard, leathery look to it.  It looked absolutely hideous.  There is no way it could not have contributed to her pain level. I didn’t ask the nurses about it.  I don’t know why.  I am usually attentive to all kinds of detail when it comes to hospital care, but I didn’t mention this.   A major regret on my part.

The next day I noticed that the nurses had brought in moist sponges on a stick. (I’m sure there is a medical name for this, but I don’t know it.)  I’m sure the sponges did some good, but my opinion is that was too little, too late.  The nurses didn’t talk to me about it either.

Recently I discussed this regret with a friend who is involved in a hospice program.  He shared something with me that I think is significant here.  There should have been more oral care done with Mother from the moment the feeding tube was removed.  If that care had been given, then her tongue would not have dried out at all.

I have no other personal experience with which to compare what happened to Mother.  I just wish that I had had the advantage of 20/20 hindsight beforehand!  Of course, there are no ‘do overs’ here, so I refuse to dwell on this and let it be a burdensome memory.

However, if my 20/20 hindsight will help some of you as you face a similar situation with you family, then it has all been worth it.

Another Update for Captain Hook

I just received another update on Don and Jo Ann.  Thank you for your prayers for these precious people.  God is not just guiding them.  It is as if He is paving the road.  Thank you, God, your blessed grace and strength which you give so freely to Don and Jo Ann.  I pray that your Presence will continue to abide with them as they continue their cancer journey.

“Ahoy Prayer Warriors, We came to the Clinic this morning at 8:00 and had blood drawn. We went to the cafeteria for breakfast and then went to the Infusion Unit and had the nurse put a new dressing on the CVC line in Don’s chest. The dressing has to be changed every four days. The report on the blood work was good (A wonderful answer to prayers PRAISE GOD!). The white blood cell count was up, which means that Don’s immune system is up enough that he is not as susceptible to infections as he was. The platelet count was 10, which means that Don will need a transfusion of platelets. We are now waiting for the transfusion.

We are planning on going home tomorrow for a few days. We will need to watch the platelet count while we are home. We are not sure what the treatment plan will be, but trust that God will lead the Dr. in making the decision. He is in control of this journey and we are blessed to be in His loving hands. We think we will be home for nine or ten days. We will not do another UPDATE until we return to Houston.

We want to take this opportunity to say THANK YOU and GOD BLESS EACH OF YOU FOR YOUR PRAYERS. We are looking forward to coming home and telling everyone we see how much we love and appreciate them.

GOD BLESS AND GIVE EACH OF YOU SMOOTH SAILING UNTIL WE RETURN,

CAPTAIN AND MATE”

Our Decision to Remove Mother’s Feeding Tube

It was April 10, 2005 when my sister called to tell me that Mother was very ill. I wrote about the details of Mother’s final days in previous posts, and will not rewrite them here.

When Mother was transported to the Hospice Unit at Hendrick Hospital, her doctor, the nurses, my sisters and I began the discussion of deciding whether the time had come to remove Mother’s feeding tube. At the time I was in favor of it, removing the tube, that is.

In my opinion, her body was already dying and the feeding tube was getting in the way of that process. She was ready to die. Her mind and body had declined to the point that she could do nothing for herself. Her hands. I remember her hands had curled at the wrists and could not be straightened. Her neck had ‘frozen’ in a sideways position from not having the strength to hold her head up. It was so sad.

As I have previously written, Darla agreed with me. My other sister didn’t, but finally relented. The tube was removed.

In the process of writing the most recent posts on feeding tubes, I thought about what might have happened if we had left the feeding tube in. She would have definitely lived a few more days, perhaps weeks, depending on whether or not she overcame the infection. She would have been returned to the nursing home.

Our concern was that we could tell she was in pain. Returning her to the nursing home would mean that she would not be able to have the same level of pain control as she would in the hospital. We may have been wrong about that assumption, but nevertheless, that was our understanding. The bottom line was that we did not want her to be in any more pain than necessary and leaving the feeding tube in meant that she was going have to suffer longer.

Therefore, we had it removed.

Captain Hook and First Mate, Once Again Making Lemonade From Lemons

This update on Don just arrived.  Their sweet spirit is nothing short of inspirational.  The challenge for Don is that the chemo treatments for his non Hodgkins lymphoma is very hard on his body.  His platelet count, red blood count and white blood count always bottom out when he gets a treatment.  It requires large amounts of  prayers and patience, and many transfusions to raise the counts so that he can get another treatment.  Read as they once again take sour lemons and make very sweet lemonade.

Don and Jo Ann, thank you for being so positive.  You set a wonderful example for us of God’s Grace and Peace as you travel done your cancer path.

“Ahoy to all of our faithful prayer warriors. We are at the Clinic today for blood work. The blood draw was done at 8:00 by a very special tech. named Herooth. She is a cute little lady from Ethiopia. She loves Don and always seems happy to see him. Don gives her a hard time and today she put red tape over the cotton that covered the puncture site. She told him that she bet that his wife would love to have some of the red tape so that she could put it over his mouth to keep him quite. ha ha
Don came out of her room laughing and told me. We shared the thought that Herooth knew him well.

The report on the blood work showed that the platelets were eleven (up from five on Mon.). We are now in the Transfusion Unit getting eight . units of platelets. The white blood count was 0.7 which is very low. When the white count is this low, Don must wear a mask, no fresh vegs. or fruit, and can not be around people. He would not be able to fight off any kind of infection. So I guess we will be staying close to the apartment until Mon. when they check his blood again and make a lot of good lemonade.

We want to thank all of you and express how blessed we are by the wonderful messages on the care page, the phone calls, the heartfelt cards and most of all for the prayers. God seems to send angels to minister to us when we need it. We pray that God bless each angel ten fold. You can not out give God and because you have given so much to us, you need to get ready for abundant blessings.

Smooth sailing, Captain and Mate”

The Latest On Wayne and Glynn

It is so wonderful to see Wayne and Glynn each week at church.  He is continuing to teach our Sunday School Class and sing in the choir.  What a blessing!

Wayne’s chemo treatments for pancreatic cancer are continuing on a weekly basis, with a week off after three treatments.  The treatments are contingent, of course, on his blood counts, but so far, they have all been good, so there has been no delay in the chemo.

A scan was done a couple of weeks ago and though they have not received the final results, preliminary indications are that the the tumor has shrunk approximately 30%!!!! Yes, that is a big “Thank you, God”.

We are so thankful for God’s blessings on Wayne and Glynn.  We are thankful for the Grace, Peace, and Comfort which God has abundantly given them.  We are thankful for being able to watch them as they take their cancer journey.  Because of their faith, they are an example of what it means to ‘put things in God’s hands.”  Thank you, Wayne and Glynn.  We continue to pray for you.

The Feeding Tube and Mother

I have already written about the decision to insert a feeding tube in Mother on a previous post.  At this point I would like to go into more detail about the decision.

Mother’s dementia had advanced to the point that she was unable to swallow.  She would try to eat, but the food was aspirating into her lungs, and she was in serious danger of getting aspiration pneumonia.  We were told that if she  continued eating that within three months she would have pneumonia and die.

One of my sisters was adamantly in favor of the feeding tube.  After all, Mother was still conscious.  She knew us, even though most of the time she didn’t know where she was.  She could smile at something funny and cry when she was sad.  Her ability to speak was reduced to words, not sentences.  If she wanted to tell us a story, she couldn’t.  However, she did have a few good moments here and there, when we came to see her, and when children came to see her.  She always smiled at them.

I was not in favor of the feeding tube.  I knew that she was ready to die.  She had told us so. In spite of her sweet spirit and ready smile, she hated her life in the nursing home and she was ready to go to heaven.  She no longer had the strength to sit up or even to make herself comfortable in her recliner.  She had to wait sometimes a long time in pain from sitting in one position for a long period of time.  She could no longer hold her head up and had to have pillows under her neck to be comfortable.  If she became uncomfortable, she had to wait until a CNA came by to check on her before she got any relief from her pain.  I could go on, but you get the idea.  She was not happy.  The last thing I wanted for her and the last thing I know she would want was to lie in a bed and waste away.

Still, as Darla said, it was hard to deny her the feeding tube and just let her die when she could smile and she could recognize us.  Oh, such a hard decision to make.  Darla was the swing vote and so I was ‘out voted’.

If I remember correctly, the feeding tube was inserted in November or December, 2004.  She passed away in April, 2005.

By the way. I was astounded when I learned that most of the time, feeding tubes are inserted into patients and they are returned to the nursing home the next day!  I could go on and on about that as well, but I’ll save that for another post.

Next post, removing the feeding tube

Another Captain Hook Update

This update on Don, aka Captain Hook, just arrived. It is getting harder and harder for his body to tolerate the chemo treatments. Please pray for Don and Jo Ann. This has been and will continue to be a long journey for them.

“God is good all the time!!!! All the time God is Goooooood! :<) :<) How are all of you prayer warriors? We pray that each one of you have received a wonderful blessing today. Did you look for it????

Sunday we visited South Main Baptist Church (The church that is providing our apartment). It is a beautiful church and we were able to express our appreciation for the loving apartment ministry. We met some of the volunteers that work in the “Sojourn Ministry”. They are dedicated to providing a home for the cancer patients at MD Anderson. I know it has blessed us and we Thank God for SMBC and their ministry.

We came to the clinic today for blood work. We did the blood work at 12:00 and finallllllly got a report at 5:00. The Captain’s platelets dropped to 5. (5,000) They scheduled a platelet transfusion for 9:00 to night. We hope we get out by 12:00. The other counts were not low enough to require a blood transfusion. We will have blood work again on Thursday. We are asking you to pray that God led the Dr. as he makes the decision about the next one or two treatments. We know that we are in God’s hands and we rejoice in knowing that He loves us and will lead us through this journey.

We want to thank all of you for your love and prayers. It is wonderful hearing from home…….we miss you all.

God bless with smooth sailing, Captain and Mate”

Our Family’s Next Feeding Tube Experience

When Daddy was diagnosed with Esophageal Cancer, one of his doctors mentioned that at some point the cancer would close off Daddy’s esophagus, and he would be unable to eat.  At that point we would need to make a decision about whether or not to insert a feeding tube into Daddy’s stomach to keep him alive.

After Daddy made it through two rounds of chemo and it became evident that the cancer was still growing, we decided not to do any more chemo.  Because Daddy’s mind was still clear, I determined that  It was time to talk to him about the feeding tube.  I reminded him about the doctor’s comments several weeks earlier.  I told Daddy that he didn’t need to make a decision right then, but just think about what he wanted to do when the time came.

Daddy’s pastor came to see him on a regular basis, and we always looked forward to his visits.  Bro. Burtis was always very perceptive to Daddy’s moods and never stayed long unless he felt like Daddy wanted to talk.  During one particular visit, Daddy asked Bro. Burtis to pull up a chair which meant “I have some things on my mind, and need to talk to you”.

After Bro. Burtis was seated near Daddy’s bed, Daddy began to talk about the feeding tube dilemma, stating that though he wasn’t sure what to do, but felt like he would probably refuse it because he didn’t want to be just kept alive.  Daddy then asked Bro. Burtis to share his opinion of should be done.

Bro. Burtis so wisely and gently shared that flatly deciding to refuse it at this point was not wise, because there were really many aspects of the results of having or not having a feeding tube to take into account.  For example, if the cancer closed off his esophagus, but otherwise he was still feeling good and felt like he would have more time to live with a reasonable quality of life, the perhaps accepting the feeding tube would be a wise choice.  Hmmmmmmm.  I know Daddy had not thought of it in that respect and I hadn’t either.

As it turned out, we never had to make the decision because in the end Daddy had a stoke which ended his life.

From this experience I learned that refusing or accepting a feeding tube for myself or a precious loved one, needs to be based on several aspects of the situation.  If a person will have a reasonably good quality of life and be able to have pleasure from being with people, then perhaps a feeding tube is appropriate.  If that person wants a feeding tube, then their wishes should be granted.

If, on the other hand, that person is already past the point of knowing anyone, or is not conscious and will never be conscious, if that person is no more than a person lying in a bed, or if that person has expressed the desire to never have a feeding tube, no matter what, then I believe that inserting that tube is cruel.

One of the most important lessons I learned from this experience and from Bro. Burtis’ wisdom, was that this type of decision can not be made ahead of time in most cases.  It is best to make that decision and cross that bridge when you come to it.