Close to our mile stone

Dutch has had one immediate goal: to make it to our 42nd anniversary. He's almost there. Our anniversary is tomorrow. His next mile stone is to make it until Caitlyn comes out for a visit.

Last week we weren't so sure that he would make his goals. This week looks better.

Last week brought us to the hospital at 2 in the morning because he was bleeding internally. He had already been struggling and there were signs that he might be bleeding. On Friday I called the doctor's office and the nurse told me to bring him in. Well it didn't seem THAT urgent to me, so I gave him a shower, took one myself, made sure everything was taken care of around the house and then we set off down the road. Dutch wanted me to stop and buy him some nachos and he was happily munching on them as we hit about the halfway point to the hospital. Looking at him, I couldn't think what I would tell the folks in Urgent Care why I was bringing him in. So we turned around and went back home. I hadn't slept more than an hour or two at a time for the last two days, so I thought if we could get a few more hours of sleep at home that would be a good thing.

Although we went to bed, there was no sleep and by midnight Dutch was sitting on the toilet hugging a bucket and this time there was no doubt that I needed to take him to the hospital. We were soon admitted to ICU and I spent what was left of that night "sleeping" on a chair, as I did the following two nights. It's always a bit of a challenge to get permission to stay with him. I'm met with raised eyebrows and: "You know, the rules are..." when I inform them that I stay with him 24/7. Usually it doesn't take long though until the nurses see that I can be of help and try to stay out of their way. After 3 days in ICU Dutch was transferred to a regular floor for another two days. One day on one floor, another day on another.

Our first day in ICU brought all the preparations for a Colonoscope. If you've ever had one, you know that he was supposed to drink a huge bottle of foul tasting water. After the first two glasses of it, Dutch dug in his heels and refused to drink any more! To make his point perfectly clear, he began vomiting. Doctors came up with another plan (wish I had know that when I had to drink that jug). The nurses even came up with a "poop bag" for him to wear where the poop could be suctioned off because he was too weak to make it to the potty. Great idea!! He could sleep through what would have been countless runs to the toilet. When they had to remove that bag, he wasn't so sure that it had been a good idea! I told him: Look, now you know what women go through to get a wax job!

An Endoscope and Colonoscope done on Sunday morning showed no active bleeding but did show 4 spots in his colon that could have been bleeding. Countless blood tests over the next 5 days showed him loosing blood but it was never determined for sure where it came from. He was given 5 (FIVE!!) units of blood!

I'm making light of this but of course it was anything but funny. What did happen was very precious to us. Again we got to spend every minute of every day and every night together. All the things that normally fill our minds were gone and all we had was each other. To pass the time and to take his mind off things we again told each other stories from our lives that perhaps we had never shared with each other. Or just memories that we had. Or things we are thinking about. Or things from the Bible. We had our first real Bible study together. Just a little nugget to think about. The other day we wondered if we had a wish, what would it be, and discovered that as we love Jesus with all of our hearts, minds and souls, our wishes are fulfilled.

In ICU we had a wonderful room, facing the ocean overlooking Torrey Pines Golf Course in La Jolla. In the distance we watched parasailers float in the air. It reminded us of when Todd watched birds flying in a storm and declared that they were not fighting to stay afloat but just sailing along with the wind. From there we were transferred to a dingy room. But it was a single room that we were given after much pleading from me. Please give us a private room, but don't charge us extra for it...... and they got me a cot to sleep on. Such luxury!!!! Then we heard rumors of being transferred and the cot went with me to make sure I had it that night as well.

I have been able to keep my mind on the Lord and we both know that the prayers of many are holding us up. Everything is under control. My little notebook is always out and I write down everything that happens. I have spreadsheets and medication lists and medical records and reports of blood tests. We have accepted what is happening and hope to be an inspiration to others. And then a nurse and a doctor didn't give me an update when I wanted it, and I LOST it. What a lesson that was! It showed me that I wasn't placing my trust where it belonged, but I was fine as long as I was "in control".

Today we went to the harbor again and Dutch felt well enough to walk behind his wheelchair for a little while before getting in it and having me wheel him around. Great exercises for me!. After a stop for groceries, he was exhausted and now is sleeping again. Today is the first time he is walking unassisted. he has been wobbly on his feet and even had PT at the hospital to help him walk better.

When we were at the hospital, one of our Pastors and his wife made the long trek to see us. It's always hard to know if we want company or not, but when we get company it is always so much appreciated and enjoyed. Last night we spent several hours with the neighbors again. Dutch was wiped out afterwards, but with a smile on his face. Bob and Gretchen came to see us at the hospital and we spent a lovely time together in our dungeon of a room. But it goes to show that the surroundings don't matter as much as the company.

Dutch and I talk about things that were and that might be- the other day he thought it would be a good idea for us to go through pictures and look for ones that could be shown at his memorial service. We already have our cemetery plots side by side. "Will you be on the left or right?" He pays little attention to things that would have normally captivated him. Truly the things on earth are becoming strangely dim.... I mentioned something that I might be doing after he is gone and it surprised him to think that I would be going on without him. Somehow he thought I wouldn't be far behind.... This morning I had to give in to my tears. It's all too weird and I can't wrap my mind around not having him with me. On the way out of the hospital he asked the guy who was wheeling him, if the hospital had a morgue and was satisfied when he heard they did.....

So now he's really wiped out and I need to be ready for what he might need when he wakes up. Tomorrow is our anniversary. He would like a blooming onion! And perhaps just a zip of wine to celebrate.

And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide andlong and high and deep is the love of Christ, and to know this lovethat surpasses knowledge -- that you may be filled to the measureof all the fullness of God. -- Ephesians 3:17-19 http://www.SearchGodsWord.org/desk/?query=Ephesians+3:17-19

Don't Forget Me

Yesterday Dutch told the neighbors that he feels that the doctors have given up on him. He worries when he doesn't have much of an appetite because he remembers that his father stopped eating before he died.

When we were caring for our mother, my siblings and I often joked that her wish to die could not be fulfilled while she still felt the need to control her surroundings. She had to have certain foods, certain cups for her coffee and a certain little glass for the two drops of red wine she drank each day. As time passed, the "things of earth grew strangely dim" and the part of her horizon that we could see diminished as her inward gaze expanded to new vistas.

Dutch is going through this same transition. The things in his world are growing strangely dim as he looks more and more at the glory and grace of his Lord Jesus. Countless times a day he tells me how much he loves me and how much he loves Jesus and how blessed he is. Things that would normally get him all involved don't mean much anymore.

Last night he went to bed early totally exhausted after a long day. I had a few more things to tend to before I could join him after midnight. When I came to bed he was awake and told me that he just now was able to get warm under the covers. He declined my offer of more blankets. A little after one he was sitting on the side of the bed and told me that he thought he should take his clothes off because he was so warm. (no, no temp) "Why don't you leave them on and we can just not cover you up so much" ... OK. Around two he decided that he should have some of the little cookies we brought home from the German store earlier that day. "That wouldn't be so good, should we have something else instead?" I said? So he decided on an orange, a banana and I added some walnuts and some of his medication. When I came back upstairs with his plate, he was sitting in his chair, singing a song. How wonderful to find your husband singing in the middle of the night EXCEPT WHEN YOU'RE TRYING TO GET SOME SLEEP!!!!!

So now it's 8 PM and we haven't had dinner yet. He is sleeping so you know he won't be ready for bed at the "usual" time......

Today was a beautiful, warm day. Yesterday the doctor told us to have him sit in the sun to help his groin heal. So I made him a bed outside and we sat and talked a little while his wound was sunbathing. I was wishing that I had a camcorder so I could commit these precious moments to permanent memory.....

I'm hearing: I love you!! from the other room. He's awake. Time to have dinner.

How blessed am I

Psalm 121 (New International Version)
Psalm 121
A song of ascents. 1 I lift up my eyes to the hills— where does my help come from?
2 My help comes from the LORD, the Maker of heaven and earth.
3 He will not let your foot slip— he who watches over you will not slumber;
4 indeed, he who watches over Israel will neither slumber nor sleep.
5 The LORD watches over you— the LORD is your shade at your right hand;
6 the sun will not harm you by day, nor the moon by night.
7 The LORD will keep you from all harm— he will watch over your life;
8 the LORD will watch over your coming and going both now and forevermore.

Memories from 34 years ago

Thirty Four Years ago, our son Todd went to be with the Lord. I just remembered a peom I wrote sometime before he left when I was so keenly aware of how short and limited our time on earth together would be. Here it is again as Dutch and I cherish our days together.


There is a song that goes:
"If Jesus comes tomorrow, we’ve got just one more day!"
A week ago they said Todd had two weeks left. But whether Jesus comes, or we go, we’ve all got just one more day because we have no guarantee for even a minute.
How different would we live ("Take up your cross and follow me"), love, and forgive, if we kept in mind that if Jesus comes tomorrow, then we’ve got just one more day!
There are so many yet to be told of our Lord’s love and gift of salvation, so many to be helped, led to the well that never will run dry- people contacted, smiles given, priorities felt, lessons learned and shared.
But if Jesus comes tomorrow,
we’ve got just one more day. Jesus said, "Would that you were cold or hot! So, because you are lukewarm, and neither cold nor hot, I will spew you out of my mouth" (Rev. 3:15-16)
Did we do all we could, or are there things left to be done?
Because: If Jesus comes tomorrow, then we’ve got just one more day!
How many times would we tell our kids, husbands, wives, or parents, "I love you- I’m thankful God gave you to me," if we knew we had just one more day?
Our stomachs are full and we plan progressive dinners while charitable organizations need food to give to the starving.
If Jesus comes tomorrow…..
We forget that Jesus died for us. We forget that God stood by and did nothing while Jesus paid for our sins. We forget there are so many people who don’t know about the gift of life.
If Jesus comes tomorrow!
We busy ourselves with life and drown out our feelings and the voice that said:
"Behold! I stand at the door and knock."
Yet, if Jesus comes tomorrow, then we’ve got just one more day!

What a difference a day makes!

Blood being transfused

My suitcase was packed, my records were up to date and Saturday dawned and Dutch would not even eat enough so he could take his meds.

His stools were pitch black (sorry to be so graphic), which told me he was bleeding internally. I called the doctor and was told to bring him in.

Hours in urgent care, tests and doctors are almost a blurr now but we did wind up in the hospital. This time I asked for a single room (wait 'til we get THAT bill...) so I had the hope of getting any rest.

Before he wouldn't eat and now he couldn't eat because they put him NPO in preparation for the Endoscopy they planned for Sunday morning to check for a source of the bleeding. Dutch was quite down, both mentally and physically. Although one of the nurses was able to snag a cot for me to sleep on, there was no sleep between constant checks and tests and one eye and ear listening for his every move.

When the Endoscopy showed no sign of bleeding anywhere that probe went, doctors scratched their heads, wondering what to do. Frequent blood tests monitored the extend of the bleeding and I saw the many doctors on his case in the proverbial huddle, trying to decide what to do. Scripps is a teaching hospital, so there are interns and residents and attending docs. Then there are the on-call docs for the specialists- both heart and gastro... the list goes on. I was told that they could have him swallow a camera which would take pictures all the way down his intestinal tract or they could somehow "mark" his blood cells and then take an x-ray to show where they went astray.

Monday morning at 4 AM the nurse announced that he would be getting a blood transfusion and was given a dose of Benadril to ward off who knows what. Can't remember it all. What it did do was make him even more lethargic and sleepy and unsteady on his feet. Trips to the bathroom were labored, wobbly affairs and even turning around in bed was a difficult chore. With this picture before us, it was difficult to imagine going home anytime soon. A few hours later after some more blood tests, the "team" decided that the blood loss was not extensive enough to warrant going through more tests and that indeed, he was GOING HOME!!

One of the doctors took me aside and asked repeatedly if I thought I could handle taking care of Dutch and if I had help and was there a closer hospital I could take him to in the event of an emergency. He was very sweet and caring and I could tell that he thought that things were not looking good. A day before we had a similar conversation with the attending doctor. We discussed our prayer for wisdom to know when to pursue treatment and to know when to call it a day. She said that we should treat that the same way we treat every day life: with trusting God for guidance, hope in eternity and the confidence that God will give us strength for each day.

Appointments were made for follow-up care and lab slips given so his blood could be checked again. We already had had a follow-up appointment with our main cardiologist that afternoon and it turned out that Dutch was discharged from the floor just minutes before his appointment. This doctor's office is just down one flight of stairs. Putting Dutch in a wheelchair got us there easily enough. Dr. H listen to the whole story, looked at me and said: "And they discharged him????? His heart is fine, but come in a week so we can check on him again and do blood tests." I had been told to see our local doctor but getting this appointment made that unnecessary and easier. All of their reports are computerised and accessible to all doctors within the hospital so it's easier to keep track of it all. We still love it when we go there and the doctors say they know all about us because they just read the chart on the computer and we don't have to bring them up to speed each time.

So now we're home. When we arrived, dinner was already sitting sitting at our front door. Aren't friends just the best? A couple of days have gone by and even on the first day home, Dutch felt so very much better! His strength, spirit and outlook have changed for the better drastically! Once the Benadryl wore off, the effect of having new blood flowing through his veins is so obvious. Today we marvelled again at how thankful we are to the person who donated this blood! We can't say enough about that!! Because of our liver problems, we have never been able to donate, but if you can, how wonderful of you to do that!

Last night we talked a little about seeing friends in church and other places. Dutch said how difficult it was for him to be talking with them. "What do I say when they ask me: 'How are you Dutch?' " All of his life he always answered that question with: GOOD, GOOD! GOOD!! But now he feels that this answer is dis-honest. He doesn't want to go over his whole story to everyone who asks, so he decided that it's better he doesn't see anyone. When we left the hospital, he commented that he felt like "dead man walking" and appreciated the fact that I understood that. We so often talk about dieing (sp??) but it is usually in the sweet by and by. Looking at it like it may happen even today gives it another face. "Should we call Forest Lawn so we can pick out a casket?" He asked me? "Will they come clear down here to get me or do 'we' have to get a local mortuary?" I assured him that it would be no problem to take care of all that so we dropped the subject.

The day after we came home, one of our Pastors came to visit and Dutch loved talking to him, being encouraged and being assured that he didn't have to worry about me because everyone at church would be there for me when I needed them. Dave also read Scripture which placed our focus right back where it should be: Jesus! We wondered what heaven must be like and how transient our short life here is. Then our neighbor came for a quick visit. "No, I don't want coffee, I'll just stay a couple of minutes" I sat by and watched as they talked, chuckled and laughed, told stories and reminisced. I kept watching Dutch for signs of fatigue but over 2 hours later, they were still going strong. Sid gave Dutch something to think about besides his troubles and it was good! At the hospital there was one lab technician who had that same gift. Dutch has been pocked so many times, had one IV in each arm and just no veins left from which to draw blood. This guy began telling jokes and soon had us both trying to solve his riddles. I watches his mouth move and his voice smile as he intently looked over Dutch's arms and miraculously found one more place that would yield some blood. He was good! He kept Dutch busy with jokes so he didn't hardly notice being stuck once again. What a gift competence is!

The last couple of nights, Dutch was able to climb the stairs to our bedroom again and we no longer needed to sleep downstairs. Today we went for a walk in the harbor again. Life is good! How blessed we are!

Stent # 4

So I'm wondering why I write this blog and if I should write all the things down that we go through. From past experiences, I know that it helps to write things down because that is like having someone to talk to. But this publicly? As you know from this blog, I wrote a book about our son Todd's battle with cancer. What I didn't write about, was our son John's battle with weight and how Dutch was at his side when he died, and many other things. My brother and I and others chronicled the time we spent with our mother when she prepared for her departure.

Then there is always that hope that our experiences might inspire someone else to something and especially to faith. Our faith is in Jesus.

We are now about a year and a half past the time that Dutch was diagnosed with end stage liver disease and who knows how long he has had it before it was diagnosed. As the doctors tell me, they really don't know how long we have. It could be a prolonged process or complications could set in and it could end today. We all live that way but most of us don't know it. We are blessed to be very conscious that our days are numbered and thus count each day as a blessing and hope to live it in a way that is pleasing to God. Of course we certainly fall way short of that, but the desire is there.

Along the way, besides all of the liver issues, we have found that Dutch had heart issues as well and those are being addressed as good as possible. For the most part, the baby has fallen into the well and it's kind of late to cover the well- if you know what I mean. The doctors and I agree that we concentrate on nagging him about issues that effect his immediate well being and back off on the ones that won't make a difference now, although they would have in the past.

So here begins the point of this post: Dutch was scheduleded for a follow-up angiogram to check on the condition of the 3 stents that were placed a few months ago. Because of his liver condition, uncoated stents were used. Coated ones are too dangerous because they require more blood thinners. His liver condition makes him bleed and adding blood thinners just makes that worse. His last follow-up showed that some of the stents were beginning to clog again and balloons were used to open them up. This procedure found that the old stents were working fine but a new blockage was found and another stent placed. Enter the blood thinners.....

A beaming doctor told me how well things went and how happy he was with the performance of the previous stents. When Dutch was transferred into his bed in ICU, the nurses found that the entry point into the artery was bleeding again and applied immediate pressure. I was asked to leave and when I returned they had placed some device on his groin to apply this pressure. Because of being overweight, it was more difficult to get "down" to the point of bleeding. The pressure that this device applies can be adjusted and they cranked it up a long ways. The wound was checked in short intervals to look for bleeding and pressure was adjusted as they thought necessary. This picture looks like it is showing something else, but isn't. It shows the wound through the "eye" of the device. At first Dutch said it didn't hurt (it HAD to- given the amount of pressure) but then suddenly he was in SEVERE pain! Having to lay for hours without moving his leg and having all that pressure applied took it's toll. He was so agitated that the meds could not take hold. I held on to his leg to keep him from moving it, held his hand so he could squeeze it, two nurses did what they could and it was intense! He screamed and begged for us to take the device off and even the threat of bleeding out sounded better to him than the pain he was in. He complained especially of pain on the right side of his back which posed the question of bleeding into his back. Bloodtest looking for extensive blood loss fortunately turned out negative.

I always stay with him around the clock when he is in the hospital and this was a great example as to why. If I had gone home all of this would have transpired in my absence. The doctor came and eventually they were able to reduce some pressure and the meds took hold and things quieted down. I was quite upset with the doctor and told him that I really didn't want Dutch to have any more blood thinners if this was the consequence. I told him that I didn't care if this new stent did fail. A heart attack would be certain, was the answer. So who's to know the better of two "evils"?

During a lull in the "action" I texted and asked for immediate prayer. I knew that I needed someone besides myself to be holding us up right then. Norma wrote back immediately with scripture verses that helped me focus and calmed me down. I prayed for faith and love and peace and hope-- not just for today but for eternity. We trust in an eternity with God and look for the things on earth to grow strangely dim in the light of His glory and grace.

Morning came and the device came off and Dutch sat up in a chair and went for a walk around the halls and amidst assurances that the bleeding had stopped we were sent home.

We're both resting a lot and enjoying the fact that we are retired without a schedule. Issues about trying to sell the business flare up into heated discussions and die down again, temporarily put aside in the hope and trust that it will all work out. Dutch worries about how I will be taken care of if something happens to him and I get sick.....

So now it's time to re-stock the overnight bags for the hospital, make sure all the records are up to date, make follow-up doctor's appointments,

figure out how I can hold pressure on a wound and call 911 and unlock the doors all at once, should the need arise, and trust God!