Dad is gone.

Yesterday my father left us.

He was doing fine. He had been completely off the ventilator on Monday and had done well. There were plans to transfer him to a vent rehab type facility in Ann Arbor. His spirits were OK. He was ready to try the transfer and the paperwork was in the works. Respirator therapy had planned two periods of being off the ventilator on Tuesday.

On Monday night when I said good-bye he asked if I would be there in the morning. I said I couldn't make it until the afternoon but that I would see him then. He said, "I hope so." Those words echoed a little in my mind and I hoped that something unexpected wasn't about to happen.

On Tuesday morning I got a call from the hospital saying they were performing CPR. By the time I got there he was gone. The nurse said, "Something sudden must have happened." He had talked to her ten minutes before. The doctor said he was "shocked." It was not that he wasn't really very ill. It's just that there were no indications he was near the end. His heart stopped. Perhaps it had reached its physical limit.

My daughter was at the hospital about 5 minutes after I arrived. We said the Chaplet of Divine Mercy and then the glorious mysterious of the rosary. My brother arrived shortly after that. We stayed for hours with him in the room. It was just hard to leave. I had sat there for so many days and I just didn't want to leave him.

I'll write more about this later. It's hard to write through the tears.

For those of you nearby.....His name is Richard Bailhe. Visitation is at Lynch & Sons in Troy, Michigan from 2 to 9 on Thursday. The funeral is at St. Thomas More Church in Troy at 10:00 on Friday. Thank you for keeping us in your prayers!!

What a difference a day makes...

Yesterday my father said he wanted all the tubes removed and that he wanted to die. This was in the morning. As the day went on we talked to him again about the future and he wasn't so clear. He even said that, yes, he wanted to die, but then added "for now..." This assessing of a desire to live on the part of a person on life support is very difficult. Anyone who feels awful might say "I want to die" and really mean it at that moment, but only because their judgment is clouded by the suffering or depression of the moment. We finally decided that Dad was having mixed feelings, was certainly down, and that he wasn't thinking clearly enough to be making life and death decisions. It was a very scary time.

I think it's very important that very ill and debilitated people like my father understand and be told that their life still has value. I told him that his life was still very precious to me even on the ventilator. I told him that his life still had value and that everybody who loves him still thinks so. I gave him some examples too of how he could still enjoy his grandchildren even in his condition-- we could still watch football games together and he could still hear them play music. Then I added that "that being said, I don't know what it feels like to be in your condition and you are under no obligation to continue to fight and to stay on the ventilator. If you want to give up, we'll support you. Just know that your life is still valuable." something to that effect. I think when a person is suffering that much, if they are not reminded of the value with which others regard their life, it would be very easy to decide it would just be better for everybody for them to just die.

So... the good news...today he was much better. He smiled a lot and said (mouthed) some funny things. For the last two days he has been on minimal assist (cpap) from the ventilator all day long and just on full assist at night to give him a rest. When he heard that he mouthed, "better than I thought." Today I asked the nurse how she thought he was doing. She said he's doing fine. I asked if she though he was improving and she said unequivocally "yes, but he has a long way to go." I asked if he was making small incremental steps in the right direction and she said he definitely was. I went in to my dad's room and told him exactly what she had said and he put a fist in the air (like a gesture of triumph).

This is not to say that there might not come a day when it is clear that my father will not recover and he might decide he wants the vent turned off. But I do believe that suffering is redemptive and that all human life is valuable and purposeful. I wonder how many times people have been pulled off "life support" because they were having a bad day or because no one told them that all life has meaning, even and maybe especially, life in a state of debilitation.

Thank you all for your prayers and kind words. I have no doubt of their effect and I thank God for all of you.

Happy Thanksgiving

Happy Thanksgiving!!

I have much to be thankful for and would write about those things if I weren't so physically and emotionally exhausted.

My dad has been moved to a step-down intensive care unit. His condition is really about the same. His spirits are really low, though. He seems, understandably, to be getting depressed.

I made Thanksgiving dinner at my dad's house so we could be closer to the hospital. It sadly occurred to me that this may be the last Thanksgiving we ever celebrate in that house. There was comfort, though, in the feeling of my mother's presence which is always so strong there. I am sure she is busy interceding constantly for my dad and our family as my dad's life hangs in the balance.

There is talk of transferring my father to the University of Michigan medical center since he has pretty much exhausted the resources for getting a firm diagnosis at the hospital he is at. Please pray for wisdom and clarity for all of us-- my dad, the doctors, and our family.

God bless you all. I pray you all had a wonderful Thanksgiving. (You Americans, that is) Thanks be to God for his mercy endures forever!

ALS????

Today I learned that the neurologist talked to my dad yesterday and told him that the most likely diagnosis is ALS (Lou Gehrig's Disease). She told him this without talking to us first and without even informing us. In other words. she told an 81 year old man on a ventilator that he has a terminal illness and may never be able to breath again on his own. She told him this without a single family member being present, and without even so much as a phone call to let his family know. And he can't talk to ask any questions.

I was furious. They couldn't do the tracheotomy or the muscle biopsy without my signing a consent form, but they can deliver to him the equivalent of a death sentence without informing me before or after. I felt like saying when was I going to find out, when he spelled ALS on the alphabet board??

Anyway, I''m not convinced it's accurate anyway since several doctors had already said they had ruled out ALS. Why would she tell him such a thing without 100% certainty? Could it be that after 20 days on a ventilator and no diagnosis they thought they better write something down? They don't even have the results of the muscle biopsy yet.

OK. I'm calming down. Thanks for letting me vent. We had a nice day anyway, even though Michigan lost. He had six grandchildren, 2 children, 1 in-law, and two friends at the hospital, taking turns watching the game with him. He smiled most of the time. I think he really enjoyed all the company so much that the game results were almost irrelevant.

Please continue to pray for my dad (Richard) and our family and for an accurate diagnosis-- and, most of all, for the Lord's most perfect will to be accomplished at this most significant time in my dad's life. The Lord gives and the Lord takes away. Blessed be the Lord.

Some good news.....

Today my father was eating ice chips!! Because of the tracheotomy it is possible for him to eat and drink by mouth now, as long as he can swallow well enough. He has not yet had the swallow testing but he's definitely swallowing the water from the ice chips. He has wanted ice chips so badly these last two weeks that this is really a very big victory for him. If he passes their swallow test he may even be able to eat.

And.... they're planning to move him to a step-down intensive care unit! I guess he is pretty stable. The respiratory therapist was even talking about getting him up to sit in a chair for a little bit tomorrow.

Tonight he was very alert and trying to communicate. He "told" the nurse that he graduated from the University of Michigan 57 years ago. Tomorrow my brother and I and some of our kids will go to the hospital to watch Michigan beat Ohio State with him. (we hope-- smile)

So, all in all. it was the best day I've had with my dad since he was admitted 20 days ago. Still no diagnosis and no results yet from the muscle biopsy, but at least there were some steps in the right direction.

Thank you for all your prayers!!! God is good!!

Tracheotomy!

Yesterday my dad was given a tracheotomy. He is now being ventilated through the hole in his neck instead of a tube down his throat. This was a difficult decision. The trach is not permanent. It can be healed over if it should no longer be needed. But it is more permanent than the tube in the throat. My dad agreed to it. He is still alert for periods during the day and he's aware of what is going on. It is for this reason that we, as well as many of the hospital staff, do not think that this breathing problem is a result of the aging process. It is disproportionate to the rest of his health.

Anyway... back to the tracheotomy. The trach has the advantage of being more comfortable-- no tube down the throat. And it's much safer. The throat tubes can cause trauma over time to the throat and vocal chords, especially if they're removed and reinserted many times. With the trach they can turn down the vent, even turn it off for hours at a time and then restart it. So he could build up breathing ability gradually without any risk of trauma to his throat. He may also be able to eat regular foods with it if his swallow ability is OK. Right now he's getting tube feeding. He may even be able to talk with it during the times when the vent is off.

Then today he had a muscle biopsy done to gather more information about where this muscle weakness may be coming from. It will hopefully result in a diagnosis--and, even more hopefully, a treatable diagnosis. The biopsy was from his thigh which was the first place he felt like his strength was being affected.

These last two days were pretty tough. I was at the hospital alone most of the time. It's such a relief to have these two procedures through and to see that he's still OK. So far, it does not appear to have been too much for him. He is much more alert than when he first went on the vent.

Thank you all so, so much for your prayers. They are sustaining me. I thank God for my dear blogging friends. May the Lord return to you in grace all the love you are sending my way in the form of prayers.

Must get to bed....

Day 14 on the ventilator

Today is the 14th day and still no diagnosis. There is talk of a tracheostomy to make him more comfortable and to allow for more flexibility in using the vent. With the trach he could be on the vent for part of a day and off for say a few hours at a time. So far, my dad does not want to do it.

My 17 year old was in the play, "The Miracle Worker" this weekend. It was such an inspiring story and they did such a good job. Watching it was a lovely break from the life and death issues that have been dominating my thoughts.

Still haven't had much time for blogging besides a few minutes here and there. I really miss reading everybody's posts daily. But I will be back. God bless you all for your kind and supportive words and, most of all, for your prayers which I know are being answered.

A Quiet Day

Today is quiet. Lizzie has a sore throat and a slight fever. I'm not feeling so well myself so we are both home taking it easy. I drove kids to two schools and came home and went back to bed. It's actually been very peaceful, in spite of my headache. I haven't even listened to talk radio because I thought more discussion of the election results might draw my spirits downward. I just don't want to hear about Nancy Pelosi right now. It's too disheartening, to say the least.

So for the first time in 13 days I won't be at the hospital visiting my dad. I spoke with his ICU nurse and he's about the same. He's alert, involved in decisions about his care, and cooperative. Because of this, a number of nurses, doctors, etc. are saying there is reason to hope he may recover, pending of course on the actual diagnosis which we don't yet have.

They all agree that his case is unusual. He looks like he should be able to breathe on his own and they don't know what condition is preventing him from doing so. He does have a number of heart problems that may be contributing, but they do not alone seem to provide a sufficient explanation. His cardiologist of 22 years thinks he will recover.

Thank you for all your prayers. May God give the doctors wisdom and right understanding.

Back on the vent after a 15 hour reprieve

Yesterday they tried my dad off the ventilator again and he did fine for 15 hours. Then his blood gases started looking bad, even dangerous, and they had to put him back on. It was a great disappointment again, but I knew it was a possibility. They're very concerned about his very weak cough.

So... now we're facing the decision with him of having a tracheotomy or, basically, giving up. He does not, fortunately, seem interested in giving up but I'm not sure he understands the gravity of his situation.

Tomorrow we have a family conference with all the doctors involved-- cardiologist, neurologist, rheumatologist, attending, and pulmonologist. The problem is they do not have a diagnosis!! They really don't know why he can't breathe. And without a diagnosis there is no prognosis and no way to realistically approach the prospects of his future health.

Oh Lord, please enlighten these doctors. May the right ideas come to them. May they understand what they need to do. Please give my father peace and right judgment. And may your most perfect will be accomplished.

Since today would have been my parents' 56th wedding anniversary I ask for my mother's intercession in the situation. I even stopped at her grave on the way to the hospital.

Oh Lord, please give me strength. Please give me wisdom and show me how to be the daughter you want me to be right now. Please keep me going....

Day 8 on the ventilator

Just got back from the hospital. They tested my father's breathing again and let him breathe for a little while with the vent turned off (but tube still in). His parameters were not as good as Saturday so they didn't want to risk it. I guess each reinsertion is a risk to to the tissues of the throat and esophagus.

The good news is the doctors are finally looking more seriously at neurological and muscle disorders as a cause. They're doing more testing. I just hope the diagnosis is not too late. He's pretty alert a lot of the time and communicating with an alphabet board. He watched the Lions game yesterday and they won!! That was nice since they don't win very often and he asked to watch the game.

Please pray for wisdom for the doctors, peace for my dad, and most of all, for the Lord's most perfect will to be accomplished in this whole confusing situation. St. Joseph, pray for us!!!

Well... it didn't turn out to be as great a day as I expected. Everything was going well. It looked like he would have no trouble when they pulled out the vent tube since he had already been breathing on his own for an hour. But when they pulled it out his lungs started developing a lot of secretions. He couldn't cough them up effectively enough and his oxygen levels started dropping too low so they had to reinsert it! He only had it out for about 15 minutes. I'm hoping this is an example of 3 steps forward, 1 backward.

We did have a good visit anyway. Liz drew Grandpa 4 new pictures for the wall-- a pumpkin, a snowman, a flower scene, and a turkey, complete with "To Grandpa" "I love you" "From Liz" messages. He seemed to really like them.

We also brought a cd of John playing the piano which they let us play on the computer in his room. He really liked that too, gesturing to the nurse that his grandson was only 17. He's so proud of him.

I'm so exhausted when I get home from these trips I can barely read anybody's posts. I'm sorry. I'll catch up when things calm down.

Thank you for all of your prayers.

Glory to God! My father's coming back!!!!

They still have the ventilator in but he's breathing on his own!!!!!!!!!!!!!!!! Pulseox of 99 and 100!!!!! I'm on my way to the hospital. If his blood work is good they're going to pull the vent tube out!!!

Thank you for all your prayers! You are all so sweet to me. God has a plan and it's mysterious, but He is God and we are not. I place my father in his hands. May the Lord richly bless every one of you prayer warriors. May the joy and peace of our awesome Master be upon you all and upon everyone you love. I ask for God's mercy upon my dad. Through the intercession of Saint Joseph may my father have a happy death at the time God has appointed. And I thank him with all my heart that it no longer appears to be imminent. I'll post more tomorrow.

Glory to God in the Highest! The Lord gives and the Lord takes away. Blessed be the Lord.

Day 4 on the ventilator

Day 4 on the ventilator...

My dad was a little less alert today and not as communicative. His numbers were still OK. Meds are keeping his blood pressure up and, with the respirator, his oxygen levels are good. Still, I feel a growing sense of grief. He still could pull through although one doctor has said he does not expect it. Although, I've been aware for a long time that his health was declining, to be here watching him breathe on a respirator still leaves me in disbelief. I feel very vulnerable and numb. But I know that when I am weak He is strong, (Jesus, that is) and it is His strength that is carrying me through.

My youngest made a very colorful design of the word "Grandpa" and we taped it to the wall with a few grandkids' pictures.

I'm taking one day at a time.... that's all any of us have, right?

My father remains in stable condition. He's conscious and he's trying to talk and/or write what he wants to say. His blood pressure dropped dangerously low yesterday (70/30) but they were able to get it back up with more fluids and meds. I'm leaving to pick my sister up at the airport and then head back to the hospital.

Thank you so, so much for all of your prayers. We have had some wonderful nurses and medical personnel and I feel unnaturally peaceful most of the time. I haven't had time to do any blogging and I'm looking forward to catching up on your posts.

God bless you all. Please keep praying as you feel led.

Rosemary