Homesick

I really haven't felt like posting much lately. Yesterday Van, Becky and I went to Lake Erie for a needed distraction and a change of scenery. The weather was good, a bit hot, but good.

I'm still going through my mini-crisis of faith, which happens EVERY time I lose someone close. I usually need reassurance from others and I often read some type of Christian apologetic resource to bolster my faith. I've started reading a book by William Lane Craig, who is one of the best defenders of the faith out there. It's a bit of a heavy read....Craig delves into the thoughts of the great philosophers (Sartre, Kierkegaard, John Locke, etc.). He also employs the use of probability calculus, inductive and deductive logic and other methods of reasoning to show that the Christ of the Bible is who He says He is. I am enjoying it immensely. If you are unsure of Christianity or would like to have some "meat" to back up your faith to others, I recommend this book. You can also visit Dr. Craig's website by clicking on this link: Reasonable Faith or read more info about the book at this link: Reasonable Faith Tools.

These past days I've been thinking a lot about heaven. A song by Mercy Me, a Christian group, has lyrics that always get to me. The song is called "Homesick."

You’re in a better place, I’ve heard a thousand times
And at least a thousand times I’ve rejoiced for you
But the reason why I’m broken the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home’s where my heart is then I’m out of place
Lord won’t you give me strength to make it through somehow
I‘ve never been more homesick than now

Help me Lord because I don’t understand Your ways
The reason why I wonder if I’ll ever know
But even if You showed me the hurt would be the same
Because I’m still here so far away from home

In Christ there are no goodbyes
In Christ there is no end
So I’ll hold onto Jesus with all that I have
To see you again

Written by MercyMe and Peter Kipley
©2004 Simpleville Music (ASCAP), Wet As A Fish Music (ASCAP) and Wordspring Music / Songs From The Indigo Room (SESAC)

Thank you

So many people have comforted us this past week. We've received cards, emails, notes, prayers, a lot of food (it kept coming all week) and love. We are grateful.

The memorial service was very nice. The military honors were very touching. We played on of John's favorite songs, "Blue Sky" by the Allman Brothers Band. The church has been very gracious and Father Denny celebrated a beautiful mass. He was so good to John, visiting him wherever he was...nursing home, hospital, Greer House. The church members always provided John with fresh flowers over the past several years. Trinity Episcopal Church has been a blessing to John.

It was especially nice to have our cousin Diane and her son, Shawn, travel from Phoenix to be with us. Their mom, our Aunt Rose, is very special to us. Her health is not great, so they were anxious to come here to honor John. Thank you.

Today was very quiet, which was good. The first quiet day since last week. I can't even believe John has been gone a week already. He is so very missed.

Should I be angry that Steve Jobs received a new liver? I just read about it this morning. He has a form of pancreatic cancer and I read that it had metastasized to his liver. That should have ruled him out for a new liver. I can't help but feel a little angry that he was able to circumvent protocol to get a transplant. I know it's not right to feel this way, but I do.

I am starting to make plans to return to Florida. There are things to do here before I go. It will probably be sometime after the 4th. I don't know what my plans are after that.

I hope all the dads out there had a nice Father's Day.

now what

I wake up in the morning with no nursing home to go to, no Greer House to go to, no hospital to go to. It's a very empty feeling.

We have family and friends all around bringing comfort to us. I think we've planned a really nice memorial service for John.

His obituary can be found at:

New Castle News and William F. and Roger M. DeCarbo Funeral Home.

I talk a good game

What comes out of my mouth (and typed from my fingers) is often different than what's in my heart. I seriously struggle with my faith when I lose someone close. I ask a lot of questions...what is life all about....why is it so hard? Is there really a heaven that's beautiful and eternal? Hard to imagine when we look around us. Then I do the "what ifs" in my head. What if John would've had interferon treatment years ago? What if he wouldn't have broken his hip? What if SOMEONE would've tapped him these past several weeks? I think that's the toughest one for me right now. He desperately wanted tapped and he would've felt immensely better if that would have happened. He would have moved around a lot easier and gotten stronger. It was so incredibly hard to watch him get upset when it looked like it would happen and then it wouldn't. And I would tell him, "They're tapping you tomorrow after they give you plasma!" And then the answer was no. Just not fair. I think he decided to "chuck it" (his words) when we told him his platelets kept dropping even after receiving blood products. He knew then that the battle was futile. I mourn not only for my brother but also for what might have been.

Goodbye for now

My dear brother John breathed his last breath on earth during the early morning of June 14th. I am eternally grateful to God for providing a way for John to return home to his place at Greer House, where he was loved by residents and staff. It was his desire to pass there, the place he called home. He arrived there yesterday, late afternoon, and was conscious enough to know he was home. He slept peacefully through the first night and entered a deeper sleep yesterday morning. It was around midnight or so this morning that his breathing patterns changed and within 45 minutes, he left his earthly body to arrive in the presence of the Lord, where we all will be together again soon. What a day that will be when we are made whole once again, this time without affliction, tears, sadness. Just joy. Amen to that.

My dear brother

All,

John's PCP came in to see him this afternoon and spoke with him privately, then with us. John expressed his wishes to go peacefully. He also told him he would like to die at his home at Greer House, but unfortunately, we don't see how that's possible, which breaks my heart. His doctor told us not to feel bad about that; they will start giving him morphine to eliminate his pain and God will take care of the rest. He is not in excruciating pain, but why not make him as comfortable as possible. He told us that the morphine will speed up things and if there's anyone who wants to see him, they need to do it as soon as possible. Our brother Joe is flying in tomorrow morning. This is very hard to take, but we have been blessed with a wonderful brother and friend. It is a blessing to have him be able to express what he wants. That takes a huge burden off us. We will miss him terribly but look forward to that day when we will all be together again and most especially, with our Lord.

Thank you all. Your kind words, prayers and encouragement are gratefully appreciated, more than you will ever know.

Love,
Susan

So hard

John changed his mind last night and does not want blood, does not want to be tapped, etc. He has fought the good fight. He is a peace with his decision. I am having a hard time. I should be happy for him to go on to be with the Lord, but the feeling of loss is overwhelming.

His kidneys are not functioning very well and we've been told he will probably go into renal failure. When, I don't know, of course. His BP is still low, but stable, heart rate okay, blood oxygen fine. He seems to be more comfortable today and is resting.

Thanks for your continued prayers.

Sigh

After a little bit of optimism last night, John deteriorated quite a bit overnight and this morning. He is still in ICU. His platelets have dropped. They suctioned out at least a liter of old blood from his stomach. His BP is very low and his PCP doctor asked us how far we wanted to go.

As of late this afternoon, there doesn't seem to be much more blood being sucked out of stomach, it mostly looks like typical stomach stuff, so MAYBE his platelet count will increase. He has decided that he doesn't want to be resuscitated if/when it comes to that. I did talk him into accepting blood products in the hope they will still be able to tap him. His BP is still quite low, but blood oxygen levels are good and his electrolytes aren't bad. But he's SO tired of it all. He is alert, very much at peace and not at all afraid. We've been able to spend some time in prayer with him today which included two visits from pastors. I just stopped back here to take the dogs out and feed them. I'll be going back soon and we'll watch the hockey game with him on this little tiny TV in his room. That should be interesting.

Please continue to pray for healing, wisdom and peace. God can still perform a miracle if it's His will. Thanks for your prayers.

Love,
Susan

Scary crazy day

Wow, what a day. In the morning Van and I made a bunch of phone calls to appeal Medicare's denial of John's physical and occupational therapy. That got resolved, yay. He'll be receiving restorative therapy, which means the therapists will work with him in his room, even while he's in bed. This should be significantly easier and if he gains strength he can return to PT.

Then the real fun began. When we went to see John at lunchtime, he was sitting in a chair with a plastic basin. He had vomited old blood (also called "coffee grounds") and the nursing home arranged for him to go to the hospital. He didn't look good and seemed to be having some trouble breathing. He got to the ER and by that time was in respiratory distress. He was sweating and just looked horrible. He was incredibly congested. They suctioned thick mucus from him. His blood oxygen levels were in the 70s and his heart rate above 150. I thought he might croak right then and there. Oddly, his blood work was fairly good. The ER doctor said other than his bilirubin being high, the other liver functions were not bad at all. His platelets were 56K, which is higher than they've been in quite some time. And his lungs are clear. He was admitted to ICU. After they got him settled they put him on a bi-pap machine to help him breathe better. His heart rate slowed down and his blood oxygen levels were back in the 90s. Whew. Later this evening, he was breathing much better and they removed the bi-pap for awhile but will use it again during the night. His heart is still elevated, around the 120s, but better than before. The ICU nurse suctioned him and got nearly a liter of old blood from his stomach so she inserted a NG tube to continue the suctioning. The blood thing can happen with liver disease. The good news is they are going to tap him tomorrow, THANK YOU JESUS. I told the pulmonary doc that no one has wanted to tap him, but he said, "They'll do it. There's more than one way to skin a cat." They gave him vitamin K and plasma to thicken his blood. His platelets are good to go if they remain where they are now.

So the poor guy had a rough day, but tomorrow should be better for him.

Hockey Night :-(

Forgot to post last night. John is actually doing a little better. Yesterday he lost the 2 pounds he gained after getting blood products plus one more. And today he lost 4 more and a 1/2 inch off his belly. Yesterday we talked with the dietitian and he'll now get 6 small meals/snacks (they talked about doing this before). The only thing that needs to be pureed is meat. So he can have cereal, grilled cheese, PB&J, etc. I think he'll eat better just because things will taste better.

Last evening he remained awake and alert and tonight he watched the hockey game (such as it was) until 10:00. I've noticed that as long as there is something for him to do, he can remain alert and not feel the need to sleep so much. The fatigue is part of liver disease, so his energy level is always low.

Today I got him a couple of resistance tubes and a light hand weight. I told him we were going to start exercising! He needs a lot of motivation. Don't think I mentioned it here, but his physical and occupational therapy have been discontinued because he wasn't showing much progress. I've got a call into the insurance company to appeal it and hopefully get him back on it again now that he's losing the excess fluid. He REALLY needs to continue the therapy.

Thanks once again for your prayers! xo

Tired!

John was a lot more alert today, but his skin is really yellow. His bilirubin must be up. And I can tell he's really aged in the past few months. He's eating slightly better but is generally very tired. I know I'm exhausted so I can't even imagine what it's like for him.

I know there was something else I wanted to post but now I can't remember it.

A long long day

Yesterday John was in a decent mood and not too uncomfortable. He had dropped 3 pounds and stayed awake for most of the hockey game, which may have been helped by the iced coffee I brought him.

This morning he went to the hospital for blood and platelets. I got there about 15 minutes after he did. He was sleeping. They hadn't started the blood transfusion. They finally did around 10:30. Those units drip very slowly. He was still being transfused at 2:30, was uncomfortable and very tired. He received platelets much later in the day. Around 5:30 or so they drew blood to check his blood counts. The nurse was to call John's PCP with the results before releasing him. It didn't take too long to get the results back, but the nurse tried reaching the doctor for about 45 minutes...paging, answering service, cell phone. Unusual because he usually returns calls pretty quickly, but hey, the guy probably has a life. Anyway, he called back and said it was okay to send him back to the nursing home. It was 7:30. John was totally beat and out of it. I felt so bad.

He's still losing weight...lost 4 pounds since yesterday and 2 1/2 inches off his belly. I hope it's the excess fluid. He is barely eating and I hope that's not why he's dropping weight. The downside to the heavy diuretics is they can be dehydrating which makes it pretty hard to start an IV. I could tell he was not having fun. Ouch.

I have an appointment with my ENT Monday. Last week I popped my jaw and it REALLY hurts. I don't know what I did. I was hoping the pain would subside but it hasn't at all. It does force me to chew slowly when eating and that can't be a bad thing, right?

An active Monday

So yesterday John was sleepy and having a hard time getting comfortable. He hasn't been eating very well. No appetite with the stomach the way it is.

Today's happenings:

His weight was 211 this morning. Thursday he was 213, Friday he was 216, Saturday 213, Sunday 213, today 211. I hope this indicates a downward trend, but I'm not convinced yet, since the weight loss could be due to his low caloric intake.

As for his diet, I know he's to keep below 2 gm of sodium (2000 mg). I spoke with the dietitian last week and she said they remove all lunch meat and other high sodium meats from his diet, but I really don't know his entire sodium intake, although it can't be too much because he's eating so little. I think he's getting enough fluids.

Today he told me he walked a few steps in physical therapy. I was pleasantly surprised to hear this since he seems so weak. His blood work from today shows his platelets at 19K, INR 2.7, but his electrolytes are perfect. They faxed the results to the hepatologist so we'll have to see what he wants to do next. Darryl's wife Laurie (a nurse) suggested he get another x-ray on his hip. He hasn't had one for some time so it will be interesting to see if the hip fracture has healed finally. Since his platelets are pretty low, his PCP ordered a blood transfusion. He'll get that Wednesday.

Lili's procedure went well. They removed a cyst and found a lot of endometriosis. Her throat is still sore from the breathing tube. She's coughed all night the last few nights. The doctor said it should get better in another day or two.

Today my great-niece turned 5. Happy birthday Mackenzie! xo