Here In Time

Appendix III : Grandma Sharon's Birthday

2010-02-10T15:22:00.008-06:00

Max, Mark, and Megan,

Today would have been Grandma Sharon's 69th Birthday. She loved us all very much, and today we can remember all the fun we had together.

Appendix II : When Your Dad was Your Age....

2010-02-08T17:57:00.004-06:00

Max and Mark,

I thought you might like to see some pictures of your dad when he was your age. I sent you some in the mail today, but thought I would post some as well.

Appendix I : Christmas Clips

2010-01-18T16:02:00.007-06:00

Thanks to all who have checked back regularly for more video clips. Here are a few:

This one is from Christmas 2008. Mom had just gotten out of the hospital for her first surgery. This was both Deron and Mom's last Christmas:
http://www.youtube.com/watch?v=IaRrOzPyWew

Christmas Day 2007.
This was Deron's last Christmas, possibly last day, at Mom's house.
http://www.youtube.com/watch?v=mxsMnuB0nhM&feature=channel

Christmas Eve Tag 2007.
For all of you who didn't think Sharon could be wild and crazy....
http://www.youtube.com/watch?v=6oEOVRoHnNY

Christmas Cookies 2007
http://www.youtube.com/watch?v=i4h2bsZg400

All Good Things....

2009-12-21T18:41:00.006-06:00

I wish the blog could keep going. I wish Deron were here to write it. But it was his ideas and passion and experiences that made it interesting. No one else can duplicate that.

Thank you to all you readers out there who joined Deron from a distance. I've heard many of you say that you felt like you knew Deron through the blog even though you never met him. It was so neat to see someone so private about his disease his whole life, open up in cyberspace. He would never have had the chance to make so many friends or impact so many people as he did without it.

Deron's and Mom's funeral services and slide shows are posted, so those of you who couldn't make it in person can see or hear what they were like. They were both so good, so appropriate to each person.

I may occasionally post more old videos of Deron with the kids as I come across them. I have more.

It hurts to think that people aren't going to be reading his blog any more. One thing I do when I really miss Deron is to go back in his blog to today's date, a year ago, and see what was on his mind. Sometimes I can imagine his voice reading post, and it makes me smile.

One of the pastors at Deron's funeral reminded us that God isn't finished with Deron. And I'm so glad. But Deron has no more need of this blog. It remains for his boys, for Jan, for me, and for you to read if we wish.

The End.

Sharon's Funeral

2009-12-20T18:28:00.005-06:00

We did not video Mom's funeral, but we did make an audio recording. My movie making skills are extremely limited, so I put the audio file with one picture that was on the service brochure. The picture lasts about five seconds, and then you see a blank screen, but you hear the entire service.

It is posted on YouTube in several parts. You will hear three Johnny Cash songs in the middle of the service. Those were played during a slide show. The complete slide show is shown here:

http://www.youtube.com/watch?v=HOWX6sJlphc

Thanks to our friend Adam Molstad for putting it together.

Here is the service:

Part 1
http://www.youtube.com/watch?v=wG49mSQ9W54
Part 2
http://www.youtube.com/watch?v=4XXRNOukGw8
Part 3
http://www.youtube.com/watch?v=5TaYadHIFsI
Part 4
http://www.youtube.com/watch?v=G8Zf3RN24I4
Part 5
http://www.youtube.com/watch?v=_gCAi7_FI7A
Part 6
http://www.youtube.com/watch?v=0znTjS_kUW8
Part 7
http://www.youtube.com/watch?v=bmpDURYYIS4

One more thing...the service was underway when they began recording. You miss part of the scripture reading. It is listed below:

"The things we see are here today, gone tomorrow. But the things we can't see now will last forever. For instance, we know that when these bodies of ours are taken down like tents and folded away, they will be replaced by resurrection bodies in heaven - God made, not handmade - and we'll never have to relocate our "tents" again. Sometimes we can hardly wait to move - and so we cry out in frustration. Compared to what's coming, living conditions around here seem like a stopover in an unfurnished shack, and we're tired of it! We've been given a glimpse of the real thing, our true home, our resurrection bodies! The Spirit of God whets our appetite by giving us a taste of what's ahead. He puts a little of heaven in our hearts so that we'll never settle for less.

"That's why we live with such good cheer. You won't see us drooping our heads or dragging our feet! Cramped conditions here don't get us down. They only remind us of the spacious living conditions ahead. It's what we trust in but don't yet see that keeps us going. Do you suppose a few ruts in the road or rocks in the path are going to stop us? When the time comes, we'll be plenty ready to exchange exile for homecoming.

"But neither exile or homecoming is the main thing. Cheerfully pleasing God is the main thing, and that's what we aim to do, regardless of our conditions. Sooner or later we'll all have to face God, regardless of our conditions. We will appear before Christ and take what's coming to us as a result of our actions, either good or bad."

2 Corinthians 5:1-10.

Deron's Funeral

2009-12-20T16:46:00.005-06:00

Sharon's Funeral

2009-11-28T14:26:00.001-06:00

Sharon's funeral will be in Brookings, SD at the Wesleyan Church on Tuesday, Dec. 1, at 11:00 am. Visitation will be at the church from 9:00 am until the time of the service.

Sharon is in Heaven

2009-11-27T20:24:00.004-06:00

Dawn called just a little while ago. She asked me to put it on the blog. She said that Sharon went peacefully.

2009-11-27T11:26:00.004-06:00

Sharon is now running a fever of 102 degrees. The doctor has said that this is common with brain tumors as there is swelling in the brain, and, among other things, the brain has difficulty regulating temperature. Also, her blood pressure is low.

Dawn says that Sharon continues to appear comfortable, and that they will keep her in the Hospice House until the end. The doctors continue to have difficulty giving a time frame as to when that would be. We pray that God will take her quickly so that she will not suffer.

Thanks again for your prayers, and we will do our best to keep you updated.

Update on Sharon

2009-11-26T21:23:00.005-06:00

Over the past two days, Sharon's condition has continued to decline fairly rapidly. On Tuesday, Sharon was talking about things that didn't really make sense, but Dawn could understand the words. Yesterday, Sharon began mumbling her words, and Dawn could not understand them. Now, Dawn tells me, that Sharon has not really woken up in the last 24 hours.

She is sleeping comfortably, and does not appear to be in pain. They are giving her continuous IV morphine, and this appears to be keeping the pain under control very well. They are not giving her any other medications at this time. They do not feel they are necessary.

Her breathing is heavy, but it is at a regular rate at this time. Dawn states that everyone she talks to at the Hospice House gives her a different estimate as to how long until Sharon would join Gene and Deron in heaven so no one really knows (except God). We take comfort in the fact that Sharon is not in pain.

This is about all I know for now. Dawn is remaining strong in her faith and she is dealing with all this as well as anyone could expect. We want to thank you again for all the prayers for our family. We will keep everyone updated the best we can.

One to Two Weeks

2009-11-24T17:40:00.003-06:00

Mom is declining rapidly. She is currently in the Hospice House, which is beautiful. They thought she would be transferred to a local nursing home, but now they think she will most likely need to be at the Hospice House. They believe she is showing signs of being about 1-2 weeks from passing away.

She had a rough day today with confusion and agitation and possibly some pain, but I think they found the right mix of drugs for her now. When I left today, she gave me a big smile and said, "We had a lot of fun, didn't we!"

No More

2009-11-20T13:32:00.003-06:00

Mom saw an oncologist at the University of Iowa today. Due to her weakened condition, he will not give her any more chemo. Her radiologist says they have done what they can do with radiation. Hopefully, she will retain her vision, which was the goal.

The oncologist said that her high calcium level, which was the reason she was in the hospital, was a direct result of the cancer.

He suggested contacting hospice, which we are doing.

And I just talked with the doctor, and we have to go back in to a hospital here. More details to follow.

Lifting Weights

2009-11-18T19:08:00.004-06:00

Some of you may not know that Deron was quite a weight lifter. Of course, his workouts were more strenuous in his younger years, but here he is a little over a year before transplant lifting weights with Mark.

Deron's Life Story

2009-11-18T16:01:00.002-06:00

Thought I would post this for those who couldn't be at the funeral...I like the term "life story" instead of "obituary." This was printed on the back of the program at the funeral.

Deron was born August 18, 1971, in Brookings, SD, the sone of Eugene and Sharon (Johnson) Arnold. He was diagnosed with cystic fibrosis when he was 4 years old. He grew up in Brookings, graduating from high school in 1990. Deron made it his goal to become a doctor at a young age. He studied very hard and was first in his class in high school and college, and received many honors in medical school. He received his undergraduate degree in Chemistry from South Dakota State University in 1994 and attended medical school at University of South Dakota, Vermillion, receiving his MD in 1998.

Deron was a wonderful person to be around. He was warm, fun, and surprisingly energetic considering his condition. Ever since he was little, he used his treatment time to read or study. He loved to read the Bible, particularly the Psalms, and various books about Christianity. C. S. Lewis ane J. R. R. Tolkein were among his favorite authors. Later, he also used his treatment time to search the internet for various tidbits of interest - many of which he incorporated into his blog, "Here In Time."

He always kept his childlike curiosity for learning. He enjoyed comparing and contrasting different versions of the Bible, and he enjoyed his profession so much that he often requested medical books as well as various study Bibles and other reference works for Christmas and birthday presents. An added benefit of his chosen profession was meeting Jan while they were both working at the same hospital. On June 13th, 1998, he was united in marriage to Jan Gustafson at Viking Covenant Church in Viking, Minnesota. They moved to Sioux Falls, SD, where he started his five-year residency in pathology. He completed his residency at the USD in Sioux Falls in 2003, and they moved to Willmar, MN. He was a pathologist with Minnesota Pathologists Chartered at Rice Memorial Hospital.

Deron was loved and encouraged first by his father and mother, and later by his sister, wife and twin sons, Maxwell and Mark, who were born on Dec. 31st, 2004. Being a husband and father was one of his life's greatest desires - one not often fulfilled for someone with cystic fibrosis. It gave him a great deal of happiness, joy and fulfillment like no other experience in his life.

Deron lived his life based on his faith in Jesus. He was loving, fair, honorable, helpful, persistent, and truthful. He loved his wife and was faithful to her. He loved his kids and spent as much time as he could playing with them, leading devotions at bedtime, and showing a Godly example to them. He worked hard and performed excellently as a pathologist, even though he never felt well. He tried to find humor where possible in his circumstances.

Due to his treatments, it was difficult to spend much time with Deron. But for those who got that chance, even for a few minutes, the surprise was that although they may have thought they were visiting to uplift him, they were the ones who left inspired.

Surviving are his wife, Jan of Willmar; sons, Maxwell and Mark; mother, Sharon Arnold of Brookings, SD; sister Dawn (and Joel) Mason of Cedar Falls, IA; many uncles, aunts, and cousins; four nieces and one nephew. He was preceded in death by his father, Gene, and all grandparents.

He is truly enjoying Heaven. My his memory be blessed.

Surprised by Joy

2009-11-15T19:12:00.003-06:00

I was going through the tapes I made of Deron's funeral service and found an unexpected surprise. The following clip was taken a year before transplant, at Deron's 37th Birthday.

Thought this one was good, too:

I've got lots more I just need to find....

The Funeral

2009-11-15T09:21:00.001-06:00

If a funeral can be wonderful, Deron's was.

We are working on getting the video of the service posted on the blog, for those who couldn't be there.

Update on Funeral and Sharon

2009-11-10T19:33:00.005-06:00

Deron's Visitation:
When: Friday, Nov 13th from 5-8 P.M.
Where: Harvey Anderson (and Johnson) Funeral Home
1000 19th Avenue SW
Willmar, MN (with a time for the family at 4:30)

Deron's Funeral
When: Saturday Nov. 14th at 10:30 a.m.
Where: Willmar Evangelical Free Church
1305 19th Ave. SW
Willmar, MN 56201

These two places are on the same street, and very easy to find.
Here is a link to a map and websites that might be helpful:
http://www.mapquest.com/maps?city=Willmar&state=MN&address=1000+19th+Ave+Sw&zipcode=56201
Harvey Anderson (and Johnson) funeral home
http://www.hafh.org/
Willmar E Free Church:
http://efreewillmar.org/

Also for people looking for a hotel. I would recommend the County Inn and Suites
as it is the newest and the closest: http://www.countryinns.com/willmarmn
(But there are other options, too: Holiday Inn, Days Inn, AmericInn, Super 8, and Comfort Inn.)

Sharon
Dawn says that Sharon has been pleasantly confused today due to her electrolytes being off. This was caused by the dehydation and vomiting. She has not thrown-up today, and continues to receive IV fluids. She has been able to take some Ensure this evening. She also was able to walk twice with a walker so she is a little stronger than yesterday as well.

Barb and Rick are heading to Iowa tomorrow to help Sharon, Dawn, and family. It is much appreciated. Thanks again for the prayers!

Deron's Funeral and Update on Sharon

2009-11-09T18:02:00.005-06:00

I am very appreciative of the outflow of support that I have received. Thank you!

I wanted to get the information out about the dates and locations of the visitation and the funeral. The times have not yet been finalized. I plan to post that tomorrow evening.

There will be a visitation at the Harvey Anderson funeral home in Willmar on Friday, November 13th. The funeral will be on Saturday, November 14th, at the Willmar Evangelical Free Church.

Thanks again for all the prayer support that we have received. I felt God giving us grace and strength during the hospitalization, and I continue to feel supported through your prayers.

Sharon Update

Sharon is hospitalized in Iowa City tonight. She started throwing up during the morning radiation treatment with some IV fluids that they were giving her, and she collapsed shortly thereafter. Please continue to pray for Sharon's health.

Deron is in Heaven

2009-11-08T13:49:00.001-06:00

Prayer Needed

2009-11-08T10:03:00.003-06:00

The doctors had to take Deron back to surgery last night because he wasn't breathing well even though his saturations were good: 100% on supplemental oxygen. His stomach was becoming more distended among other things, and they needed to take a look. Once they got in there, they saw he was bleeding, but they couldn't pinpoint an exact cause of the bleeding because it was more like he was "oozing" from everywhere inside his abdomen.

The doctors say the liver disease is the main cause of the problem right now, and they can't do anything to treat it. This did happen very suddenly, but it really has been coming on for a long while. They said his liver doesn't look like a liver anymore; with the combination of the underlying cystic fibrosis and the damage that the drugs have done, it looks like a rock.

They have given him strong drugs to try to stop the bleeding even though the risk of doing so is that the clots in his arms could break away or break open and cause damage to his heart and and/or lungs. The doctors have said that all they can really do right now is try keep him comfortable.

We know that's all that the doctors can do, but that's not all that OUR GOD can do. We also know that God may choose not to heal Deron at this time, but rather choose to restore his body in heaven.

I like to think of the quote that Julie told me that a friend told her "Our view of life on this Earth is so distorted, but our life on this Earth is the hardest."

Thanks for your prayers.

Deron Not Expected to Survive

2009-11-08T09:20:00.001-06:00

He is bleeding "from everywhere". His liver isn't working.

Deron Having Trouble

2009-11-08T08:47:00.003-06:00

Deron had some trouble during the night and it continues today. We are a little sketchy on details. He had to go back to the OR last night, his stomach was swollen. They opened him back up, but didn't find the problem.

His lungs look good, but he has a lot of CO2 in his blood.

His blood ph is 1. It should be around 7. They are thinking dialysis may help, but his blood pressure is so low, they don't know if he can tolerate it.

That's all we know. Jan is on her way there.

Please, please pray with us today.

Deron is in Recovery

2009-11-07T12:02:00.002-06:00

They did take Deron down to surgery pretty much on time. They got started around 8:45 a.m.

Nothing is easy or simple medically with Deron. Here is the summary from the surgeon: The adhesion (scar tissue) in the small intestine was much more extensive than they thought. The adhesion was on the right side of his abdomen, and it is likely what has been causing all the pain. They had to resect a fairly significant portion of the small intestine, and he now has an ostomy bag on at the end the his small intestine.

They surgeon was hopeful that at a future date, they could reconnect both sites (at the small intestine and the previous large intestine), but we will have to wait and see. She was also hopeful that Deron will now be able to get good nutrition which should help with healing.

They were able to do a liver biopsy when they were in surgery. The surgeon said that the liver did not look healthy, which, I guess, is not surprising as his liver markers have been so high for so long now. We will have to wait and see what the biopsy shows. I'm guessing we would find out Monday at the earliest.

I'm waiting to see Deron still. He will be in the ICU for at least a few days.

Thanks to everyone for their continued prayer and support!

Midnight Call from Deron: Surgery in the A.M!

2009-11-07T00:01:00.003-06:00

Deron just called me, and the abdominal CT from this evening shows that he has an obstruction in his small intestine. This CT was significantly different from the abdominal CT that he had 4 days ago.

I called the nurses station to get more information, and I ended up being able to talk with the surgeon who will do the surgery. She said she didn't yet know a definite time, but she was going to request 8:00 a.m.

It is not uncommon for people who have had abdominal procedures in the past to develop adhesions. She is planning to go in through the same incision that he has from his previous abdominal surgery (in August), and she hopes to be able to "divide" the scar tissue and then be able to reconnect the intestines so that they will work. Please pray that this surgery will be successful and that it will relieve Deron's pain and symptoms. Thank you, and I will keep you posted the best that I can. Go, Team Arnold, Go!

"Stuck" in a Holding Pattern

2009-11-05T16:13:00.015-06:00

Deron still has a significant amount of mucous stuck to the stent. The doctor tried the three-pronged attack for the secretions today during the bronchoscopy, but he was not very successful. He feels the next step is for the surgeon who put in the stent to try to clean it out with different instruments, but we don't know when that would be yet.

Deron is quite uncomfortable. He still has not had a bowel movement since last Thursday. They stopped the tube feedings last Saturday. On Tuesday, Deron had the procedure (gastrografin enema) where they put in about 1-1.5 Liters of fluid into his large intestine through the osteomy. About half of the fluid came out immediately after the procedure, but nothing else to speak of since then.

He is on 5 laxatives (and/or stool softeners) now; 3 of them are twice a day. He has had a couple of suppositories. No success. Deron does have adhesions in his intestines (which is common after abdominal surgery). We're not sure what the next step is yet. The doctor was going to talk to the surgeon tonight, but I know they don't want to do surgery.

Deron is a "trooper," and he continues plug along and work on exercises and sitting tolerance even though it is so uncomfortable. He sat for 10 minutes on the edge of the bed yesterday with assist, and then he sat in a wheelchair for 45 minutes. I had the chance to push him in the chair down to the end of the hallway where he could look outside with windows on three sides. (Too bad it wasn't sunny yesterday.) He hasn't been able to breathe outside air since July.

In all this, Deron and I are holding on strongly to our faith. We continue to be grateful for all the prayers. And I know that Deron has been concerned that he doesn't want others to become discouraged in their faith if they would feel like God is not answering their prayers offered in his behalf.

2 Corinthians 12:9 And he said unto me, "My grace is sufficient for you for My power is made perfect in weakness." Most gladly, therefore, I will rather boast about my infirmities, that the power of Christ may dwell in me.

2009-11-03T15:28:00.010-06:00

WARNING: For those with weaker stomachs, this post might be a little too "descriptive." I had wanted to avoid putting too many "graphic" details, but this is the only way to explain it.

Deron has had abdominal pain for several weeks now. He has been taking quite a bit of strong pain medications for over two weeks (which are known to cause constipation), but he wasn't on any laxatives or stool softeners to begin with because his stool was so liquid-y. Then the abdominal pain kind of intensified with some nausea as well, and all of a sudden last Thursday, he stopped having any stool all together.

So they started him on some laxatives and stool softeners, and even though he has worked up to taking 3 laxatives twice a day, he still has not had any stool since Thursday. I mentioned that they stopped his tube feedings on Saturday because he wasn't getting anything "out." That relieved some of the nausea, but the pain continues.

Deron had a procedure today that he hasn't had before: Gastro Graphen Enema. Sounds fun, doesn't it?

This procedure was completed in the radiology department. Basically, they put as much "special solution" as they can into the intestines through the osteomy. They were able to put in about 1.5 Liters of the "special solution" into Deron's intestines. This procedure is supposed be diagnostic and also to have the "therapeutic" effect of getting things moving, but it will probably take a little bit of time.

The other procedure for the day was a bronchoscopy. Deron still has quite a bit of (sticky, gooey) adhesions stuck to the stent (at the left lung connection). The right lung connection continues to be in "okay" shape. There were not many other secretions in the lungs so that is good. The next bronchoscopy is slated for Thursday. The game plan is three-fold: (1) have Deron receive humidified air via a mask for several hours prior to the scope, (2) try another nebulized medication that will try to thin out the secretions, and (3) try to find a scope with a larger diameter for suction.

His liver markers are creeping up again. They are again tossing around the idea of a liver biopsy. We will have to wait and see.

Deron continues to work hard with PT and OT daily. He is sitting on the edge of the bed for up to 20 minutes with intermittent minimal assist. He continues dialysis 4 times a week. We keep working as hard as we can, and we know that your prayers are supporting us. Thank you.

ON A LIGHTER NOTE: (These are some jokes I have been coming up with in my "spare" time.)

How do you know you have been in the hospital too long?

1. You know each the pulmonologists, renal doctors, cardiovascular and thoracic surgeons on a first name basis.

2. You have had a "run-in" with each of the charge nurses on every unit that you have been on.

3. You know each of the respiratory, occupational, physical, and speech therapists, and THEY HAVE HEARD ABOUT YOU!!

4. Your wife's cell phone number is on the nursing unit's speed dial, and they have considered making it a "blocked number!"

5. The entire staff knows what your children were for Halloween.

6. You won the "Most Bronchoscopies" in a single season award!

Any others?

2009-11-01T14:52:00.005-06:00

The SUPER TWINS visited Deron yesterday. "Mighty Spidey-Mark" and "Brave and Bold Bat-Max" were a hit with everyone who saw them! The boys enjoyed showing Dad their costumes, and, of course, they enjoyed the trick-and-treating with their cousins (or superpower partners) in the evening. (See pictures posted on Oct. 31.)

Deron continues to work on strengthening. He is sitting on the edge of the bed twice a day with therapy, and also working on exercises. He will have dialysis 4 times a week: Monday, Wed, Friday, and Saturday. He is currently scheduled for a bronchoscopy Tues and Thursday this week. (Keeping that "test/procedure per day" average up).

Deron continues to have intermittent, intense abdominal pain. He has had this pain on his right side for quite some time. On Friday, he started to have some nausea, and they stopped his tube feedings on Saturday, and the nausea has now subsided. They feel the pain and nausea are probably related to fluid, but they continue to run tests so that they do not miss anything. He had an abdominal X-ray Friday and Saturday, and he had an abdominal CT today. (Again, keeping the test per day average up.)

Psalm 143:7-10 Answer me quickly, O LORD; my spirit fails. Do not hide Your face from me or I will be like those who go down to the pit. Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way to go, for to You I lift up my soul. Rescue me from my enemies, O LORD, for I hide myself in You. Teach me to do Your will, for You are my God; may Your good spirit lead me on level ground.

Happy Halloween!

2009-10-31T22:09:00.010-05:00

Deron enjoyed seeing his SUPER kids in action today!

Then the SUPER TEAM met up at the "Hall of Justice" to discuss candy strategy!

Yes, they are precious and also sugar-y sweet!

2009-10-30T22:30:00.006-05:00

Deron had another bronchoscopy this morning. This is the second bronchoscopy since the stent was placed last Saturday night. The stent has some hardened secretions that are "stuck" to it which are causing the airway to be more narrow, but this has not given Deron trouble breathing (like the narrowed airway did prior to the stent). The lungs themselves were more clear. The doctor thinks that until Deron is able to be more active (i.e. standing, etc) that it will probably be a struggle to keep the stent clear. The next bronchoscopy is scheduled for Tuesday (but it will be sooner if Deron starts to have difficulty with breathing).

I wasn't able to watch the bronchoscopy today because I needed to take Max to his yearly cardiology appointment. (Maxwell had a congenital heart defect, and he had an open-heart surgical repair at 3 months old.) He needs a yearly follow up with his cardiologist and an echocardiogram (which is basically, an ultrasound to "look" at the heart). Max did very well with his appointment, and he is cleared for another year. (There is an area that they are watching with Max to make sure that it does not become a problem as he grows.)

Max, Mark, and I spent time with Deron both before and after Max's appointment. Deron was a little sleepy this morning following his bronchoscopy due to the medications that he was given for that procedure. Deron also had PT and OT this morning, and then he had dialysis this afternoon. I know Deron enjoyed seeing the boys. I haven't been able to bring them in a while since they were still recovering from being ill. Tomorrow, we plan to make it down to see Deron again, hopefully, in costume. I also hope to post pictures of the "superheros"--er, I mean, boys-- tomorrow so stay tuned!

2009-10-28T16:47:00.009-05:00

No major changes over the past two days. Deron continues to have 1-2 procedures or tests a day. He is working to keep up his TPD Average--Tests Per Day Average. (Just kidding.)

Yesterday, he had an ultrasound of the upper arms to check on the clots. They are improving slightly. He also had a more permanent dialysis catheter placed by interventional radiology. This procedure took about 2 hours. It was painful, but successful.

Today, he had a bronchoscopy where the doctor checked the lungs and lung connections. The stent looked good, and it was in a good position. There were quite a bit of secretions in both of the lungs today, which the doctor was able to clean out with suction.

Then Deron had a four-hour dialysis "run" in which they were able to take off 4.2 Liters of fluid or slightly over 9 lbs. Deron was quite tired after dialysis. (Maybe that is why they call it a "run.")

He continues to have intermittent abdominal pain especially on his right side. They feel it is due to a combination of factors: medications, fluid, and lack of gravity acting on his organs. We continue to work on sitting tolerance and hope to work toward standing soon.

Hebrews 4:14-16 Therefore, since we have a great high priest who has gone through the heavens, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are--yet was without sin. Let us then approach the throne of grace with confidence so that we may receive mercy and find grace to help us in our time of need.

2009-10-26T21:21:00.006-05:00

Deron is doing much better with his breathing and activity tolerance since receiving the stent. He hasn't had anymore episodes of shortness of breath. PTL! He was able to sit in a chair for an hour yesterday, and for an hour-and-a-half today. He was able to participate in both OT and PT for the past two days as well. YEAH!

However, he continues to have fairly strong constant pain on the right side of his abdomen, and the pain is more intense with activity. The doctors still aren't sure exactly what is causing this pain. Deron is having to take strong pain medications again around-the-clock. Please pray that the doctors will be able to diagnose and treat this pain.

This evening, after dialysis, Deron moved out of the ICU back to the "intermediate care unit" so we are glad as that seems to be a step in the direction. Please also pray for a continued forward progression for strengthening as well. Thank you!

1 Peter 1:3-8

Blessed be the God and Father of our Lord Jesus Christ, who according to His great mercy has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to obtain an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you, who are protected by the power of God through faith for a salvation ready to be revealed in the last time. In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ; and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory.

Stent Success! PTL!

2009-10-24T20:51:00.004-05:00

The actual start time for the procedure was about 7:30 tonight. (There were some emergency surgeries that temporarily "trumped" Deron's procedure.)

I just spoke with the doctor who said everything went well. He said that the airway looked so much better with the stent in place that there was no comparison. One of the main complications that could happen would be if the stent would move or migrate.

Deron will be sedated overnight. Last night, Deron had another episode of shortness of breath due to the obstructed airway. He called me afterward at about 4:30 a.m. for some reassurance.

We continue to thank you for your prayers!

Stint to be Placed Today

2009-10-24T12:38:00.003-05:00

Jan just called and said they are going to put the stint in Deron's lungs today. They estimate the start time between 1:30 and 3:00.

Please pray that this will be a turning point in his healing, and for Deron and Jan's peace and comfort. Deron called Jan this morning at 4:30 am and needed some love and reassurance.

Fresh from the scope

2009-10-23T22:10:00.013-05:00

Deron had kind of a quiet day, especially compared to the "excitement" yesterday. He was fairly comfortable today. Around 4:00 p.m. this afternoon, Deron had another bronchoscopy.

Based on this scope, the doctors have decided that Deron will need to have a stent placed at the left lung connection. This is an example of what the stent would look like. They will go down the airway with the stent and let it "spring" open when they get it in the right place.

They have talked about this possibility, but they have wanted to wait and hold off if possible because every procedure presents a risk. They will do this procedure either this week-end or on Monday.

First Week of Radiation

2009-10-23T17:43:00.002-05:00

We just finished our first week of radiation in Iowa City, with treatments twice a day, six hours apart, and we are exhausted.

Between treatments we go to the Hope Lodge Cancer house just down the street from the hospital. It was built last year and is very nice. We usually hang out in a little library they have with a couch where mom can nap.

Mom continues to struggle with her double vision and headaches, although her nausea seems to be better controlled.

Megan stays with Stan and Alice and much thanks goes to them (also for cleaning our house!).

Please keep praying, and thanks for all your prayers in the past.

Riding the Waves--the highs and the lows

2009-10-22T21:23:00.005-05:00

Yesterday was a pretty good day. Deron sat in a regular chair (with a specialty cushion for pressure relief) for 30 minutes, and I thought I might be able to take him for a wheelchair ride today or tomorrow at least out into the hallway.

But then we had a turn of events: Around 7:00 a.m. this morning, Deron became very short of breath and his oxygen saturations were falling into the high 70% to low 80% range. He was able to put on his call light, but he told me later that it took a LONG while to for the nurse to come to check on him, and then the staff, at first, thought it was "anxiety."

What was really happening though was that the left airway was blocked by secretions and the "heap" of tissue at the left lung connection. They had to use the device (ambu bag) that is used to provide rescue breathing (as in CPR) to provide enough pressure to push air past the blocked airway. Deron said that it took about an hour-and-a-half to get his breathing under control so that he did not feel short of breath.

Once they had the breathing stabilized, they took him to have a bronchoscopy. The doctor cleared out the secretions and the airway as much as he could. He said he had to quit when the "heap" started to bleed a little.

Deron was then transferred to the medical ICU. The doctor wanted to have a close eye on him in case it would happen again; he said he would probably keep Deron in the ICU for 2-3 days. Deron was exhausted; he slept quite a bit today. He continued to have a steady stream of doctors and other staff visit him today (medical ICU team, infectious disease, pulmonary, renal team, respiratory therapy, physical therapy, etc.) He was able to complete PT leg exercises later this afternoon.

The doctor doesn't feel like this is a major setback, but I know Deron is feeling quite worn out from all of the "excitement" and a little apprehensive that something like it might happen again. Who wouldn't? But Deron helped everyone to collaborate so that there is now a plan in place if it would happen again, and that is helpful both physically and mentally.

Psalm 34

I will bless the LORD at all times. His praise shall continually be in my mouth.
My soul shall make its boast in the LORD. The humble shall hear it and rejoice.
O magnify the LORD with me, and let us exalt His name together.
I sought the LORD, and He answered me, and delivered me from all my fears.
This poor man cried and the LORD heard him, and saved him out of all his troubles.
The angel of the LORD encamps around those who fear Him, and rescues them.
O taste and see that the LORD is good. How blessed is the man who takes refuge in Him.
O fear the LORD, you His saints; for to those who fear Him, there is no want.

Our first date and beyond :)

2009-10-20T22:41:00.009-05:00

Deron and I went out for our first "date" on October 20th, 1996. I was a PT student on my pediatric clinical, and Deron was in his pediatric rotation of medical school. We did not attend the same college, but we were in the same hospital for this clinical (Sioux Valley Hospital in Sioux Falls, SD). We had met a few days before at the nurses station when he came up to me and struck up a conversation.

We "ran" into each other a few other times on different days in the hallway, and then about a week and a half after we first met, he asked me to lunch. We then started to have supper together every night and then study together in the evening. (YES, we really did study!) The day after our first date, I called my mom (on her birthday), and told her I met a guy that I could marry. Deron told me later that he told his parents the same thing.

Two weeks after that first date, I was to go to my next clinical at a hospital in the twin cities for another six-week rotation, and then I went back to UND for spring semester, and he continued his training in Sioux Falls.

That summer I got a job as a PT aide at Sioux Valley Hospital, and we continued to see each other (and study together :). On his birthday (August 18th) in 1997, he proposed to me at a beautiful garden park called "Terrace Park" in Sioux Falls. I remember that we were standing on the terrace, and we could see young kids playing little league baseball in the park, and he said he wanted to raise a family with me, and we would watch our kids play little league.

I remember that a few weeks before Deron proposed to me, I knew we were possibly heading in that direction, and I was thinking and praying about marriage to Deron, knowing that he had cystic fibrosis. I remember hearing God say, "Trust Me." That is the only time I can say I felt like I've heard God talk to me, and at first, I thought I must have been dreaming. But I continued to have the feeling that since God brought us together, He would continue to sustain us and help us through the progression of the disease. And we never know with any relationship, how long they will be on this earth, and I knew that I would rather be on the path God had for us than trying to blaze a trail by myself.

(I posted an update on Deron prior to this post, but I thought I would share this fun story since it was the "anniversary" of our first date.)

We are all feeling a little better!

2009-10-20T21:08:00.005-05:00

The boys are over the fevers! Yeah! PTL! We came back to Scott and Janelle's today, and then I went down to see Deron.

Deron looks much better today than Sunday. He is not having as much trouble with his breathing. He still has times when breathing seems more difficult, but these are intermittent. He continues to be on 2 Liters of supplemental oxygen through nasal cannula. He sat on the edge of the bed with physical therapy today for about 30 minutes (with some assist), and he had a good OT session this morning, too!

The CT scan did not show anything out of the ordinary except some fluid around the lungs, and apparently it was slightly less fluid as compared to his last CT scan. The doctor also did a bronchoscopy yesterday afternoon after dialysis because Deron was feeling so congested. The bronchoscopy also was not much different than the one a few days ago, but the doctor was able to clear out some secretions and that appears to have helped some.

Deron's liver function tests are all improving; they are coming "close to high-normal." The "liver" doctor said that they have changed a "whole bunch" of medications over the past 7-10 days, and it appears to be working.

He continues to have some generalized abdominal pain, but he also has developed a "new" right lower abdominal pain Saturday night. At rest, this pain is 3 out of 10 pain, but when he moves in bed, it is a 7-8 out of 10. He was supposed to have an abdominal ultrasound at 8:00 p.m. tonight, but as I am writing this at 9:30 p.m., he still hasn't gone down for it yet. They will have to push kind of hard (with the ultrasound) on the area of the pain to get a good "picture," but he plan to take some IV pain medication just before he goes down.

They were able to switch Deron to the low-dose heparin protocol, but he is still having some difficulty with bleeding. He is "oozing" from his abdominal incision, and the nurses have to change the abdominal mid-line dressing about every 3 hours, and his hemoglobin has slowly dropped from 10.4 on Saturday (after getting one unit of blood) to 7.2 today. Then today, he got another two units of blood.

He will have dialysis again tomorrow, but they are going to make sure that dialysis starts later in the day so that he can have THERAPY! Yeah!

We keep "pressing on," and we thank each of you for persevering in prayer for us.

Psalm 18:1-3
I Love Thee, O LORD, my strength.
The Lord is my rock and my fortress and my deliverer,
My God, my rock, in whom I take refuge;
My shield and the horn of my salvation, my stronghold.
I call upon the LORD, who is worthy to be praised.
And I am saved from my enemies.

Rough Road to Recovery Continues

2009-10-18T21:34:00.007-05:00

Deron continues to have some difficulty with breathing today. He feels somewhat short of breath with 2 Liters of supplemental oxygen. Some of the shortness of breath appears to be because of fluid in his abdomen. He is also having some pain in his right abdomen and right shoulder. Deron had a CT scan today of his chest, abdomen, and pelvis to help the doctors see what is going on. These results are still pending.

With the bronchoscopy yesterday, the doctor found some thicker (and greenish-yellow) secretions, especially in the left lung. The doctor feels that there are more secretions in the left lung because of the way some of the tissue is healing in kind of a "heap" making the airway smaller, which makes it hard for Deron to clear secretions out. (See Tuesday's post.)

I went down to visit Deron today while my sister Julie stayed with the boys. The boys continue to have fevers and coughs. We will head back to my brother's house when the boys are feeling better and "fever-free." Please continue to pray for strength and health for all of us. Thank you!

Joey Visits!

2009-10-16T20:38:00.003-05:00

Joey came today to spend the week-end with Deron. We are so glad that he could come, especially because the boys have both become sick with colds and low-grade fevers. (Mark developed it first and he still has it, and now Max started with the low-grade fever today.) We came home to Willmar for a few days to help avoid giving anything to Scott, Janelle, and the girls.

Deron says he is feeling a little congested and having a tougher time breathing today. Because of this, the doctor is going to do a bronchoscopy tomorrow to check things out. Deron is also going to have an ultrasound tomorrow of both his shoulders, where those blood clots have been for about 2 months now. They increased Deron from the low-dose heparin (a blood thinner) protocol to the high-dose heparin protocol about 4 weeks ago, but the clots still haven't really changed. His last ultrasound for the blood clots was about 2 weeks ago. At that time, they hadn't gotten bigger, but they hadn't gotten smaller either.

One of the other reasons the doctor wants to check the clots is because Deron has been having some blood show up in his colostomy bag, and the doctor wants to decrease the heparin dose if the clots are smaller or remain unchanged to help reduce risk of bleeding elsewhere.

Deron had dialysis again today, and he got a unit of blood. He is continuing to work as hard as he can to get stronger. He remains steadfast in his faith of God's sovereignty.

Isaiah 43:2-3(a)
When you go through deep waters, I will be with you.
When you go through rivers of difficulty, you will not drown.
When you walk through the fire of oppression, you will not be burned up.
The flames will not consume you.
For I am the Lord, your God, the Holy One of Israel, your Savior.

First Day of Radiation

2009-10-15T20:01:00.002-05:00

Mom had her first day of radiation in Iowa City. Tomorrow we will start getting the treatment twice a day, six hours apart.

The doctor thought she might benefit from additional chemo down the road. He said she should definitely insist on chemo with little to no side effects.

Please keep praying for healing for her. She's been very nauseous the past few days.

Another Interesting Day

2009-10-13T21:03:00.019-05:00

Deron did have a bronchoscopy today (scope of the lungs). The right lung connection looks to be continuing to slowly heal. The left connection looks in a little bit tougher shape. [The positive sign for the left connection is that the black tissue (non-viable or dead tissue) appears to be gone, but it has been replaced by a "tough-looking" yellow tissue that is continuing to extend somewhat into the airway in kind of a "heap."]

The very unexpected finding of the bronchoscopy was that the doctor saw some bile in Deron's upper airways. The thought is that the bile and other stomach juices are traveling up his esophogus (especially when he is lying down) and then he is swallowing (aspirating) them without really knowing it. The plan for this is that the nurses will drain his stomach "residual" juices at least every 8 hours. All those acidic stomach juices are definitely not helping the lung connections to heal.

The MRI test yesterday for the liver, gall bladder, etc., did not find anything that would help them diagnosis why Deron's liver markers are continuing to rise. They continue to feel that the liver dysfunction is related to all the medications. They continue to talk about doing a liver biopsy, but they do not feel that it would change anything that they are doing to treat him so they are holding off for now.

Deron continues to have a lot of areas to work on to heal. These are few of the big ones: (1) the lung connections, (2) his midline abdominal incision from the surgery in August, (3) skin breakdown on his tailbone and a couple areas on his back, (4) the chest tube sites. There have been a total of 9-10 chest tubes that he has had over the course of this hospitalization. Dr. Patil pulled the last one tonight: the one was put in a few days ago for the fluid that had collected around the lungs. It had drained over 2 Liters of fluid over the past 6 days. Deron does continue to have a "mild amount" of fluid around both lungs, but this chest tube was not in the "right place" to drain the fluid so they wanted to get it out to reduce risk of infection. So for now he does not have any chest tubes, but they are not ruling out that he might need one (or more) again.

Deron continues to work hard at getting stronger. We are continuing to work toward recovery in any way that we can, and we continue to feel blessed by everyone's support. Thanks and let's keep praying! :)

Results Pending

2009-10-12T18:55:00.006-05:00

Sunday was a quiet day. Deron had respiratory therapy, OT, and PT. He sat on the edge of the bed for 10+ minutes with some assist. He has pain with sitting (even on his specialty air mattress) because one of his areas of skin breakdown is on his tailbone. But, his skin is healing and starting to look much better. His liver numbers are also looking a little better, but still elevated.

The MRI (for the liver and gall bladder ducts, etc) was supposed to be the first item of the morning, but instead, dialysis was first, and he didn't go down for the MRI until 5:00 p.m. The results are pending. (Hence, the title. :) So we will probably get those results tomorrow.

Also, Dr. Patil is planning to do a bronchoscopy tomorrow, and the results of that will tell us a lot about how Deron's left lung connection is healing. So I should have more news to post tomorrow, but I wanted to post at least something today.

Deron continues to have intermittent nausea, and he feels as though it is worse when he is on dialysis. Deron has not been tolerating the "goal" of how much fluid they want to take off during dialysis. Today the goal was 3 Kg, but he could only tolerate 2 Kg. They have talked about that Deron may need to have dialysis every day, but they are not sure about that yet.

He is continuing to get his nutrition through the tube feedings, and he doesn't want to eat or drink anything besides water. He feels that he has always had more abdominal pain and nausea after eating so he does not want to try it again. (Also, eating isn't enjoyable to him because his mouth is so dry that it is difficult to swallow.)

So today's summary is that we need to continue to work on getting Deron to feel better and to work on strengthening day by day, one step at a time. We don't know what tomorrow holds, but we know Who holds our tomorrows!

Mom to Have More Radiation

2009-10-10T18:00:00.003-05:00

Mom's doctor in Sioux Falls discussed her situation with the tumor board in Sioux Falls. They felt she could benefit from additional radiation. They think it should help with the symptoms at least for awhile. He set up an appointment with the head of the radiology department at the University of Iowa. (Mom's doctor was trained at U of I, and practiced there for years before moving to SD.)

So, this past week we met with the new doc and did additional imaging to get ready for the treatments to start next Thursday. They expect 7 weeks of treatments, and they may want to do the treatment twice a day, six hours apart. That is a bit inconvenient for us (we're an hour and a half away from U of I in Iowa City), but we are so happy and thankful for a chance, we are more than willing to do it.

They are careful to "manage expectations" with this treament. It should alleviate mom's symptoms, which are starting to be a bit troublesome, for awhile. The doctor said, "I never say there is no hope of complete recovery, because I've had patients whose tumors have disappeared." But he did think it realistic to hope for a shorter period of time.

So, I waited to post this until we had more details. We thank God for this chance. It could make a big difference in mom and Deron getting to spend time together.

We believe that God can make this tumor disappear. Please continue to pray with us that he will.

Inch by Inch

2009-10-10T15:53:00.007-05:00

Well, we are hopefully moving in a forward direction again. On Thursday, Deron had a chest tube again placed in the left lower back to help drain fluid from around the lungs. This tube has drained 1.5 Liters of fluid in the past two days. They hope that they can pull this chest tube in the next day or two. They feel that the fluid should not build up again like that if Deron stays on a regular dialysis schedule.

The blood infection has cleared! PTL! Even better, it does not appear that this fluid around the lung was infected. :) Praise the Lord! Deron got 2 units of blood yesterday, and his color looks much better, and his hemoglobin is now up to 10!

Deron is continuing to get dialysis every other day. They are taking off about 2 Liters of fluid each day as well as balancing his electroltytes when needed. Deron is continuing to work with therapy as much as he can. It is difficult to get therapy in on dialysis days, but we do our best.

The liver markers remain elevated. They feel that changing some of the medications, and the dialysis has helped the liver but they still want to find out if there is another more specific cause. They are talking about doing a MRI to check the liver and gall bladder ducts, etc. They might do this on Monday.

Max and Mark visited Deron with me yesterday. They mainly played with the helium balloons that we had bought Deron last week. Deron had fun just watching them run around in his room, and, of course, I was trying to have them not run and not make so much noise. We shut the door to Deron's room, and no one came to talk to us to "keep it down."

Psalm 40:1-5

I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the muck and mire. He set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the LORD. Blessed is the man who makes the LORD his trust, who does not look to the proud, to those wo turn aside to false gods. Many, O LORD my God, are the wonders you have done. The things you have planned for us no one can recount to you; were I to speak and tell of them, they would be too many to declare!

Continuing to "Fight the Good Fight"

2009-10-07T18:17:00.009-05:00

Deron continues his uphill battle for health. He had a bronchoscopy yesterday, and the left lung connection continues to have a significant hole, and the surrounding tissue does not look overly healthy. (He still has some black, dying tissue around it.) The placement of the dialysis catheter and PICC line was delayed yesterday until the evening due to other's needing emergency procedures in interventional radiology so he did not have dialysis yesterday as planned because it got too late. He is having dialysis this evening, and he will likely have it every day for the next 4 days. (That is the plan for now according to the renal doctors.)

His white blood cell count has increased significantly within the last 3 days to the point where they suspect he has another infection, but so far the cultures have been negative. He had a CT of the chest, abdomen, and pelvis today to help find out what is going on. His liver markers continue to be very high, and they still do not know the exact cause of this. They have done two abdominal ultrasounds without significant findings. They have cut back on the doses of many medications, and they have discontinued many medications to help give the liver and kidneys a break but there is yet to be a significant breakthrough.

Please continue to pray that God would show his healing power in Deron's and Sharon's bodies and situations. All the medical professionals would have to take notice of God's divine intervention and it would be a true testimony that would give God glory. Amen!

I Timothy 6:11b-12 (ESV)
Pursue righteousness, godliness, faith, love, steadfastness, gentleness. Fight the good fight of the faith. Take hold of the eternal life to which you were called and about which you made the good confession in the presence of many witnesses.

Philippians 3:12-14
Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.

Continuing to "Press On"

2009-10-05T17:33:00.012-05:00

Deron had a nice visit with his family: Sharon, Dawn, Joey, and Megan. They came on Saturday around 12:00 noon. Deron was in the "dialysis dungeon." (That is my little nickname for it because it is in the basement of the old hospital building.) Deron ended up being in dialysis for 9 hours on Saturday from 10:00 a.m. to 7:00 p.m. The dialysis line which they placed in his left thigh on Friday was not working, so the doctors had to come to dialysis and replace it, and then they had to start the "run" again. He ended up being the in dungeon until night-time. We could not all be down there with him because there was not enough room (also privacy and infection control issues.) Sharon and Dawn stayed with him in the "dungeon" most of the day. We made the best of the situation. Sharon, Joey, and Megan stayed overnight in the apartment, and Dawn stayed in the hospital room with Deron. They left on Sunday a little after 1:00 p.m. They hope to be able to visit more in the future.

Deron will have a more permanent dialysis line placed tomorrow in "interventional radiology" (likely in his neck). They will also place a PICC line. They had to pull all the lines last week because of the blood infection, they did not want bacteria to cling to one of the lines, and then start to grow there, but the infection now pretty much cleared. Praise the Lord!

Deron has a very big day tomorrow. He will have a bronchoscopy tomorrow to check many items of concern: (1) the non-healing lung connection on the left, (2) the level and amount of secretions especially since he has been coughing up some blood for a few days now, (3) if there is still air around the lung (that should not be there) that has actually been somewhat collapsing the lung, and (4) if there is still fluid in and around the lungs (that should not be there).

Then he will have the procedures in interventional radiology for the dialysis line placement and the PICC line placement. And then he will have dialysis. There will probably not be any time for therapy tomorrow.

Deron did have occupational therapy this morning, and he sat on the edge of the bed for 20-25 minutes and washed his face, brushed his teeth, and completed some arm exercises. He had physical therapy this afternoon: he completed leg exercises in bed, and he also sat in a chair for 20 minutes. (He continues to have skin breakdown on his tailbone so he could not tolerate sitting longer than that today.)

He continues to be somewhat yellow-ish (jaundice). His liver numbers continue to be very high. (ALT 109, AST 198, triglycerides 1515, bilirubin 8, alkaline phosphatase 864). They still do not know exactly what is causing it. As astronomical as these numbers sound, they actually have gotten a little better.) They might need to do a liver biopsy, but he is at high risk for bleeding (with a biopsy) because of the high doses of heparin that he is getting due to the blood clots in his arms. Even with his yellow-ish tinge, there were several people today that said he looked much better than early last week.

The doctor had stopped the tube feedings last week for a while because of the liver difficulties, and Deron became hungry and less nauseous, but they started the tube feeding again yesterday, and the nausea has returned. He does not want to eat anything.

Please continue to pray for Deron to keep pressing on: to have strength to presevere, and to presevere to gain strength! Yesterday, Deron and I had a conversation with a nursing assistant originally from Kenya (his name is Silver). He says he has been searching for a "good church." He said he had tried seventh-day advent, etc. We talked about the fact that as long as the church preaches "Jesus" then it is a "good church." We didn't get to talk as long as we wanted to him because he was working, but he said that he has noticed that Deron has been a good example in his faith. Amen to that!

Philipians 3:12-14
Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.

Hebrews 4:14-16
Therefore, since we have a great high priest who has gone through the heavens, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet was without sin. Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

Family is Fantastic!

2009-10-02T23:08:00.003-05:00

Deron had a temporary dialysis line placed yesterday in his left thigh. He was sedated for that procedure, and then he went to dialysis for a "4-hour run" with a goal of taking off 4 kilograms or approximately 9 lbs. so the kidney struggle continues. Also, all of Deron's liver tests are very elevated. The doctors continue to work on finding the cause of this. Deron may need to undergo a liver biopsy within a day or two if they do not find the cause. We will keep you posted.

Sharon, Dawn, Joey, and Megan are coming to visit Deron today. We are so excited! They plan to stay in the apartment overnight and then head back to Iowa on Sunday. (I plan to then let the apartment go to another transplant family as we have not been staying there since we started staying with Scott and Janelle. (Any cards or mail can be sent to the hospital or to Scott and Janelle's house. See addresses below.)

We want to say a HUGE thank-you to Janelle, Scott, Emily, Madison, and Julie for their wonderful work in taking care of Max and Mark while I visit Deron. The boys have started to like "Emily and Madison's" house better than ours because it is "more fun." My entire family has been hugely supportive for us in this time. (And the Johnson clan have been a great support network for Sharon, and in doing so, they have also supported us.)

We want to thank each of you for your support and prayers during this time.

U of M Medical Center-Fairview
500 Harvard St.
Minneapolis, MN 55455

Jan Arnold
c/o Scott Gustafson
2497 154th Lane NW
Andover, MN 55304

(I plan to have the mail forwarded from the apartment to Scott and Janelle's so don't worry if you just sent something to the apartment. Thanks!)

More up's and down's

2009-10-01T21:34:00.007-05:00

It appears the antibiotics have started to work against his (sepsis) blood infection. Deron looked a lot better today than he has in over a week. He is a little yellow (jaundice) from his liver enzymes being "out of whack." They don't know exactly what is causing the liver problems yet. They did a liver ultrasound today, but did not find anything specific. His kidney function continues to be almost zero. They expect him to be dialysis dependent for quite some time (probably for the length of his life).

Yesterday, I asked the doctor about Deron's chances for recovery. He said he would give him a 10-40% chance to be able to get out of the hospital. (I needed some time to process that, and that's why I couldn't blog yesterday.) But, as I said, Deron looked much better today: his voice was much stronger than it has been; he was wide awake and not so sleepy. He sat on the side of the bed for 20 minutes with min assist of 2 people (on a specialty air mattress so it was even more of a work-out). He also sat up in a chair for about an hour. I was very encouraged with all of that.

However, today, Deron asked the doctor about his chances for recovery, and the doctor gave Deron the same percentages (10-40%). He said that he was "very concerned" about Deron, but that it doesn't mean that Deron can't get better. He said that because (1) Deron has been developing one problem on top of another (2) so many organ systems are now involved, and (3) because the bacteria that caused this infection is multi-drug resistant, he feels that even if Deron does get out of the hospital, the likelihood of developing re-infection is very high. (They feel the source of this infection is the multi-drug resistant bacteria that was already in his lungs and airways prior to transplant that has traveled through the opening in the lung connections and into the bloodstream.)

However, the percentages don't really matter. And along those same lines, it doesn't really matter all that much what the doctors say (or do), for we know that God is in ultimate control of every aspect of Deron's health, and that whatever God wills, will be done. If God wanted to, he could heal Deron instantaneously, but if He chooses to do it more slowly, He will give us the strength and grace to deal with that.

Psalm 146: 1-6
Praise the LORD! Praise the LORD, O my soul! I will praise the LORD while I live; I will sing praises to my God while I have my being. Do not trust in princes, in mortal man, in whom there is no salvation. His spirit departs, he returns to the earth. In that very day his thoughts perish. How blessed is he whose help is the God of Jacob, whose hope is in the LORD his God, who made heaven and earth, the sea and all that is in them--the Lord, who remains faithful forever.

Hope continues

2009-09-29T19:43:00.004-05:00

Today, the medical team found out that Deron has two additional types of bacteria in his blood. The first bacteria that we found out about on Saturday was found to be treatable with a different antibiotic that he hasn't been on lately. The team is "growing" these other bacteria to see what antibiotics these bacteria might be treatable with. (It might take another day or two to find out.) Deron has many multi-drug resistant organisms already in his body so we hope that these other bacteria will be found to be sensitive to (and not resistant to) a specific antibiotic.

He continues to run an intermittent low-grade fever. He frequently alternates between fever and chills. He continues to be very tired. He has had dialysis every day for the last seven days (which is enough to wear a person out), but add to that everything else that has been going on, it is bound to make a person wiped out.

Please pray that Deron would be able to fight this infection (sepsis), and pray that all of his body systems would heal quickly and completely. We both truly appreciate all the prayers that have been "aimed" heavenward in our behalf.

Psalm 23
The LORD is my shepherd; I shall not want. He makes me lie down in green pastures. He leads me beside still waters. He restores my soul. He leads me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows. Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the LORD forever.

Quick Update

2009-09-29T00:17:00.004-05:00

Deron moved out of the ICU last night back to the "intermediate care unit." His vital signs are doing well. He is on 2 Liters of continuous O2 (via nasal cannula), and he maintains his saturations at 98-100%. His blood pressure and heartrate are also doing well. (The doctor plans to do a bronchoscopy to check out the lungs and the connections later in the week.)

He is having less pain as he has gotten rid of a lot of the extra fluid. He had continuous dialysis from 8-9 lbs of fluid daily through IV medications, tube feedings, etc. so the dialysis also helps manage that daily fluid intake because his kidneys are not able to keep up. (He is only making about 50 cc's of urine a day, and they want about 50 cc's an hour.) He had regular dialysis Saturday, Sunday, and today. They usually try to take off 8-9 lbs daily during the regular dialysis. They are trying to work toward dialysis every other day, but his kidneys are not yet ready to handle that. He is also having some liver dysfunction. All the medications that he has to take are likely contributing to the kidney and liver difficulties.

As I said, overall, his pain is better; but he still has intermittent abdominal pain and nausea with dry heaves, and he still is extremely sensitive when anyone or anything touches one of his open skin sores. These should start to heal better now that his skin is not so taut, and because he is getting better nutrition (through the feeding tube). He can eat, but he still hasn't wanted to. He has had a few ounces of apple juice over the last few days, otherwise, he has had only water by mouth.

Deron sat on the edge of the bed this afternoon with PT for about 4 minutes with minimal assistance. He was kind of lightheaded and dizzy while sitting as he hasn't sat up like that for about 2 weeks. Tomorrow, we are hoping he can get up to sit in a chair for awhile (using a mechanical lift). So I feel like we are slowly working back to the strength he had 2 weeks ago.

Please pray for preseverance for Deron as he is having trouble seeing that he is making progress. It feels like whenever we take one step forward, we take three-fourths (3/4) of a step back. Deron is really tired of being stuck in bed in the hospital. We want to thank you all again for your prayers.

Mom In IA

2009-09-27T17:20:00.002-05:00

Mom came to Iowa today with Joey, Megan and me. We went to SD yesterday to pick her up after her sisters left on Saturday.

We've gone for a walk already around the block. It's a pretty autumn day. It's so nice to have her here for awhile. We are going to pack in as much fun into the days ahead as we can. When she gets a little stronger, we want to go see Deron. It's just a bit too much right now.

Hope

2009-09-26T21:20:00.007-05:00

But this I call to mind, and therefore I have hope: The steadfast love of the LORD never ceases; His mercies never come to an end; they are new every morning, great is Your faithfulness. "The LORD is my portion," says my soul,"therefore I will hope in Him." The LORD is good to those who wait for Him, to the soul who seeks Him. Lamentations 3:21-25

Deron finished the continous dialysis yesterday afternoon. The doctors were happy with the results. They took off about 20 lbs of fluid total over the 3 days. The doctors knew he would need to have regular dialysis every other day for a while following the continous dialysis; and in fact, he had regular dialysis today, and they took off another 4 lbs. of fluid. His skin looks much better because the fluid is gone, but he still has many skin sores (and sore areas) that need to heal.

Deron was very restless today. He seemed as though he could not get comfortable. He wanted me to help him "get out of this place." I mentioned before that he has not really sat up in a chair or at the edge of the bed for about 2 weeks. They have been working on him tolerating sitting upright in bed. When he does sit up straighter in bed, I can see all his postural muscles working (quivering and shaking) to hold himself up even when he has his back resting against the bed. The muscles that we usually take for granted to hold us up have become extremely weak again.

They also found out that Deron has an infection in his bloodstream (or sepsis) caused by a different bacteria that he hasn't had during this hospitalization. They did find that this bacteria is sensitive to an antibiotic that he hasn't been on for a while, which is good because many of his bacteria are multi-drug resistant. So that brings the total number of antibiotics that he is on to seven (7).

His white blood cells have increased from 500-600 (for the last 4 days) to 1700 yesterday and 4000 today, but he is still having symptoms of this blood infection such as a time of confusion this afternoon, but that is better now. As this new antibiotic has time to work, many of the symptoms of the infection should get better. The doctor had planned to move Deron this afternooon to the "intermediate care unit" or the step-down unit where he was last week, but when he started to have some confusion, they decided to keep him in the ICU at least overnight. The plan is for him to transfer back to the intermediate unit tomorrow, Lord willing.

So where is our hope? Our hope is in the LORD.

Behold, the eye of the LORD is on those who fear him, on those who hope in his steadfast love, that he may deliver their soul from death and keep them alive in famine. Our soul waits for the LORD; he is our help and our shield. For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O LORD, be upon us, even as we hope in you. Psalm 33:18-22 (ESV)

Thanks to the Arnold Prayer Team for continuing intercede to God for us.

Sleep vs. Rest

2009-09-24T20:33:00.004-05:00

Deron has been on continuous dialysis for about 48 hours. They have taken off about 20 lbs of fluid. His skin is starting to look better so that should help with healing his incisions, sores, etc.

He was so tired today. He would fall asleep mid-sentence with his eyes open. They think it might be the dialysis that is making him so tired. He doesn't look like himself today. I hope it is the dialysis.

Deron's white blood cells continue be very low (600). And he has been running a low-grade fever for about the past 24 hours.

Even though he is sleeping a lot, I don't know how much "rest" he is actually getting. His sleep is interrupted so often, and I know he is so tired of always being in bed. (It's hard to sleep sometimes when you are tired and ill, when you can't get up and move.) He hasn't been able to tolerate sitting in a chair for about two weeks; first it was due to the abdominal pain, and now it is due to his blood pressure and fatigue. His blood pressure is still running low (80's/40's). It's no wonder he is tired when his body is working so hard to heal every organ system.

I'm expanding "Prayer Team Arnold" to include Deron, Sharon, and Dawn. Please continue to hold them up in prayer. Thank you.

Isaiah 26:3-4
You keep him in perfect peace
whose mind is stayed on you,
because he trusts in you.
Trust in the LORD forever,
for the LORD GOD is an everlasting rock.

Not Good News

2009-09-24T12:04:00.001-05:00

Mom's results show she has a tumor growing in the back of her head. It is fast growing. They can't do anything about it.

What a day!

2009-09-22T22:58:00.008-05:00

It has been another roller-coaster day. We had another "small" detour, and I think (hope) we are "chugging" back up again.

I have to start with a HUGE thank you to all our friends and co-workers at Rice Memorial Hospital. The lab and the rehab departments worked together (and pulled in many other departments as well) to put together a huge bake sale/craft sale and silent auction benefit for us. The outpouring of generosity is overwhelming to us. We cannot put into words how much it means to us to know that people care that much. (And we were glad to find out that the "laboratory" people and the "rehab" people can get along. Just kidding. :)

Now the down curve (or detour): They moved Deron back to the ICU. His kidneys were not tolerating regular dialysis. They wanted to work on taking off fluid, but his blood pressures were dropping too low. (80's/50's). They moved him to the ICU for closer monitoring, and to be able to do continuous dialysis.

His white blood cells have dropped again today, and they are now at 600 (extremely low). They started giving him a drug yesterday to stimulate his production of white blood cells, but the doctors said it will take about a week to really start working.

They feel like they are getting the metabolic acidosis under control. The CT scan he had yesterday shows that he has some fluid both in his lungs and in the space between his lungs and the chest wall. This has been making him feel somewhat short of breath. The doctors hope that by being able to take fluid off (slowly), all of his body systems will start to work better, but it will take time. He also still has an occlusive clot that it blocking 4 main veins in his left arm, and a "not-quite-as-big" clot in his right arm. These remain unchanged for the past several weeks.

As I said before, I hope we are "chugging" back up again to full recovery. We always feel strengthened when we think about all the people that are praying for us, and we feel a big boost today from the generosity of our friends and "family" at Rice.

Still serious

2009-09-21T19:48:00.005-05:00

Today was another busy day for Deron. He had dialysis, a bronchoscopy, a CT scan, and an ultrasound of his arms (to assess the blood clots). He also got 2 units of blood because his hemoglobin had dropped to 7.2

He still has a lot going on with all of his organ systems, and he still is in a very serious condition. The bronchoscopy shows that the lung connections remain relatively unchanged. The right lung connection looks okay, but there is still black (dying) tissue over the left lung connection. The doctors feel that one of the reasons that he is having difficulty healing is that he didn't really have much nutrition this past week. They have started the tube feedings again, and he is tolerating that okay, but he still hasn't wanted to eat anything.

He continues to be very sleepy possibly due to some of the pain meds. But also, the doctors just informed me today that his white blood cells are 800 (extremely low) and that he is in metabolic acidosis (a very serious condition). I know the doctors are doing everything they can to help Deron heal. He just has a lot going on in every organ system, and everything is so inter-related.

We know that God is in ultimate control of Deron's healing and recovery, and it will happen according to God's plan and in His timing.

Psalm 31:15a "My times are in Your hands."

Jeremiah 17: 12-14 "But we worship at your throne — eternal, high, and glorious! O Lord, the hope of Israel, all who turn away from you will be disgraced. They will be buried in the dust of the earth, for they have abandoned the Lord, the fountain of living water. O Lord, if you heal me, I will be truly healed; if you save me, I will be truly saved. My praises are for you alone!"

Mom's CT Scan Tomorrow

2009-09-21T11:51:00.002-05:00

Mom has a CT scan tomorrow morning in Brookings. She will see her original sinus surgeon on Thursday. I'm not sure if we will know the results before Thursday or not.

Please pray that there is no cancer left.

Faith and Perseverance

2009-09-20T16:00:00.006-05:00

These have always been some of my favorite verses.
I feel they are true now more than ever before.

Hebrews 11: 1 and 12:1-3

Now faith is being sure of what we hope for and certain of what we do not see.

Therefore, since we are surrounded by so great a cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race that is marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy that was set before Him, endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider Him who endured such opposition from sinful men so that you will not grow weary and lose heart.

Deron has had a relatively quiet week-end. He had a "date" last night with interventional radiology (from about 6-8 p.m.). They placed an access line for dialysis in his right neck. He was sedated for this procedure. Then he had dialysis in his room (until about midnight). They took off about 4.5 lbs of fluid. He will have dialysis again on Monday.

Most of other organ systems appear to be holding steady. They have started the tube feedings again, and he can eat, but he hasn't wanted to. He is still taking pain medication and still having intermittent abdominal pain. He still also has quite a lot of pain when the nurses have to change the dressings (that are over his many tubes and skin sores) or when anyone moves his limbs to help repositioning him. He has been very sleepy especially today. It might be because of the pain medications. I'm glad that he seems to be getting some rest.

He has lost a lot of strength. Last week, he was sitting on the edge of the bed for up to 30 minutes and exercising. Now he has only been able to tolerate sitting on the edge the bed for about 30 seconds due to pain and fatigue. But I have faith that we will get there again.

Isaiah 40: 31 But those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will they run and not grow weary, they will walk and not faint.

The week of tests

2009-09-18T16:12:00.008-05:00

The week of tests: did we pass? (I hope it is all in the past.)

Deron did have a partial colonscopy today. They weren't sure if they were going to be able to do it. At 8:00 p.m. last night, he still hadn't passed any of his "prep juice" into his colostomy bag, and they found out it was actually backing up into his stomach. The nurse drained a lot of fluid out of his stomach last night, and then called the doctor, who ordered an abdominal X-ray. They found that he still had contrast in his bowel from 4-5 days ago. They were then talking about having to hook him up to suction to stimulate his bowels. YIKES! Then PRAISE the LORD! Some of the "prep juice" started to pass through, not a lot, but enough to be able to do the scope.

I was able to watch Deron's colonoscopy today. (I know, Exciting!) They did not find any active bleeding. They feel that Deron is having "intestinal spasms" and that he has very slow movement of the GI tract. So that is good that they did not find anything. They are going to add a anti-spasm pill and miralax to Deron's already-several-pages-long list of medications so hopefully that will work to control the pain.

Other Tests and Results: Deron also had an echocardiogram (ultrasound of the heart) and that was good. The ultrasound from yesterday shows that the clots still remain stable. They are probably not getting better because the have had to stop the heparin several times due to his procedures. His liver function has improved slightly, but the kidneys are getting a little worse, and they might have to start dialysis again.

Overall, I feel like we have had a week full of tests, and that we have lost quite a bit of ground on the strengthening. I'm glad that they did not find anything wrong, but it's too bad it took so long to rule everything out.

One positive thing that happened today is that Deron got to move to a bigger room. He now has a double room to himself, (and it will stay that way because he is in isolation). He was in such a cramped space before that I often had to get out of my chair to let the nurses come to the other side of the bed. Hopefully, more space will help him not feel so "penned in." It has been two months today since the transplant, and it has been about one month since his abdominal surgery.

Hopefully, we are all done with detours, and we can find a straight path out of here and back home. We thank everyone for their support, especially prayer support.

Testing Still Continues

2009-09-17T12:51:00.008-05:00

The doctors still do not know what is causing Deron's abdominal pain. They did an upper GI scope yesterday because Deron's abdominal symptoms and pain had seemed more like upper GI symptoms. They did not find anything out of the ordinary.

So they were planning to do a colonoscopy today. They started the prep for a colonoscopy last night. They gave him 1000 cc's of the "prep" stuff (through his stomach tube), but this morning he hadn't yet had anything into his colonostomy bag so things are moving really slowly for some reason. They are giving him more "prep" stuff today, and they plan to do it tomorrow.

This last abdominal CT did not show any air in his abdomen so that is good, but it makes it all the more of a mystery. The bottom line is that he doesn't feel good, and he hasn't been able to do much activity or therapy this week. Deron hasn't had much of anything to eat all week, and they also had to stop the tube feedings, of course. He has only sat on the edge of the bed twice (this week) for much shorter periods of time (less than 5 minutes) and he hasn't sat up in the chair at all. He is very much fatigued and getting weaker.

Other Tests: The ultrasound of his clots (on Monday) showed that they were stable (not better, not worse) and they did an ultrasound of the arms again today. (We do not yet have those results.) The ultrasound on Tuesday was actually of his gall bladder and that was normal. The CT scan of his chest on Tuesday showed that some fluid remains between the lung and the chest wall (pleural effusion), but the chest tube that was placed a few weeks ago has really helped, and it is still helping to drain the area although the rate of this drainage has slowed down.

And I previously "blogged" about the bronchoscopy. The doctor feels that the right lung connection is healing slowly. He says he isn't sure about the left lung connection; we will just have to "watch it," and "wait and see". Deron is immunosuppressed and on steroids; both of these slow the healing process.

The extra fluid in his body still remains a problem. (The rest of this paragraph is not for those with weak stomachs.) They have to monitor certain drug levels like heparin and prograf (an anti-rejection drug) through a "venous puncture" (and they have to do these blood tests several times a day). First, they always have a really hard time finding a vein and then after he has had a needle stick, the fluid "oozes" out of him like a leaky faucet. He has had so much fluid leaking that it is contributing to skin breakdown.

I tell you all this because I want to give you a true picture of what is going on. We truly appreciate everyone's prayers. Thank You!

1 Peter 1: 3-7 (The Message Bible)
What a God we have! And how fortunate we are to have him, this Father of our Master Jesus! Because Jesus was raised from the dead, we've been given a brand-new life and have everything to live for, including a future in heaven—and the future starts now! God is keeping careful watch over us and the future. The Day is coming when you'll have it all—life healed and whole.

I know how great this makes you feel, even though you have to put up with every kind of aggravation in the meantime. Pure gold put in the fire comes out of it proved pure; genuine faith put through this suffering comes out proved genuine. When Jesus wraps this all up, it's your faith, not your gold, that God will have on display as evidence of his victory.

Testing Continues

2009-09-15T23:18:00.009-05:00

We don't yet know the full results of the all the tests. He had three main tests today: (1) CT scan of his chest and abdomen, (2) an ultrasound of his arms to monitor the clots, and (3) a bronchoscopy (scope of the lungs) mainly to look at the lung connections. The unofficial report of the CT scan and the ultrasound are that nothing has changed significantly.

I was able to observe the bronchoscopy again today. I was disappointed. The right lung connection still looks "angry and ugly," and the left lung connection looks slightly worse. It was a different doctor who did the scope today so he could only compare it to pictures of the previous scopes. He didn't say much except that we will have to continue to "watch and monitor" it.

Deron is scheduled for a scope of the upper GI tract (upper endoscopy) tomorrow morning to help assess where his abdominal pain is coming from. The doctors did increase his pain medication so that Deron is more comfortable tonight so that is good.

James 1:2-3 My Brethren, count it all joy when you fall into various trials. Knowing that the testing of your faith produces endurance. (NIV)

Psalm 29:11 The LORD will give strength to His people; the LORD will bless His people with peace. (NIV)

Testing, testing. . . 1, 2, 3

2009-09-15T12:36:00.004-05:00

They are in the process of running a bunch of tests on Deron. They are planning to do a bronchoscopy this afternoon. They are also probably going to do a stomach scope tomorrow. I will let you know when I know something. Thanks again to the Arnold Team for the prayer power.

Update

2009-09-14T16:10:00.006-05:00

Deron continues to have significant abdominal pain. He is one tough guy! I know most people would rate this pain as a constant "10" out of "10," but he rates it as an intermittent 7-8 out of "10" in case the pain becomes more intense. He has been in near agony most of the day.

The doctors feel that this pain is due to his GI tract slowing down/stopping. Deron does have several contributing factors to this type of complication: (1) the disease of cystic fibrosis itself, (2) multiple surgeries, (3) the inability to get up and move around much, and (4) some of current medications. They changed around some of his medications, and started him on a few different medications. Deron seems comfortable as I am writing this, but the pain does come in "waves."

The clots also continue to be a concern. Both of his arms have become very puffy. They did an ultrasound today to look at the clots, and the unofficial report is that they are basically unchanged (i.e. not better, not worse).

We continue to know that God is sovereign in all circumstances, that He is the Great Physician, that He is not surprised by any of these complications, and that Deron's recovery and progress will unfold in the way that He ordains it to be. We truly appreciate your prayers.

Nahum 1:7 The Lord is good, a stronghold in the day of trouble; and He cares for those who trust in Him.

Prayer Requests

2009-09-13T15:30:00.010-05:00

"Do not be anxious about anything,
but in everything, by prayer and petition,
with thanksgiving, present your requests to God.
And the peace of God, which transcends all understanding,
will guard your hearts and your minds in Christ Jesus."
Philippians 4:6-8 (NIV)

1. Deron has been having intermittent abdominal pain for a couple days. He was becoming increasingly uncomfortable this afternoon and evening. We were concerned as to what would be causing it, but the doctors had already been to see him today (Sunday), and it did not seem urgent enough yet to call anyone. He just called me, and the nurse had just discovered as she tried to put a medication through the stomach tube, that his stomach has not been emptying. (She tried to put a medication in, and instead she got over 300 cc's out.)

The nurse then did call the GI doctor on call. When I hung up with Deron, he said he didn't know what they might do about it at this point. Deron called me back after he had talked to the GI doctor, who said that, at this point, they would "sit on it." I asked Deron if they thought that "sitting" on his stomach would help it start moving?!? (Deron did laugh. :)

That's truly what the doctor said meaning they would "watch" it. It wouldn't be so funny if it wasn't true, and we have to keep our sense of humor in all of this.) Please pray about that things would "start moving" and that his pain would lessen/subside. Thank you.

2. Please also pray that the clots (in both of his arms that have been growing larger), will safely resolve. He was on the "low-dose heparin protocol," and they did increase him to the "high-dose heparin protocol" on Saturday. But they also put PT and OT on hold for 48 hours (Sat and Sun) because of the clots so we fell a little behind on strengthening again. (With his consent, I did help Deron complete some leg exercises yesterday, but he did not feel up to it today with his pain.)

3. Please also continue to pray for the lung connections to heal, for the kidneys to increase function, for continued strengthening, for increased energy, and for his overall progress and recovery. We do know that people are praying, and we do want to thank you!

"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say to the Lord, "He is my refuge and fortress, my God, in whom I trust." Psalm 91:1-2 (NIV)

Trust in the Lord = Impossible to Fail

2009-09-11T23:23:00.007-05:00

Jeremiah 17: 7-8 But blessed is the man who trusts in the LORD, whose confidence is in him. He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.

Hebrews 4:14-16 Therefore, since we have a great high priest who has gone through the heavens, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are--yet was without sin. Let us then approach the throne of grace with confidence so that we may receive mercy and find grace to help us in our time of need.

We continue to thank for you for faithful prayer. Deron continues to keep up the good faith and the good fight, but it is tempting to get discouraged, at times, for the progress continues to be painfully slow. Deron continues to have many times a day where he is in significant pain for different reasons, and it is hard (esp. for me) to watch him have to endure so much.

Deron has been a little "groggy" the last few mornings. They are not sure if it is a medication side-effect or what it is from. It could be lack of good sleep. (Hint: continued prayer request)

Deron had several CT scans again today (chest, abdomen), and we do not know the all the results yet. One thing we do know: That the significant clots that were noted in both arms on the tests on 8/28 have grown slightly larger. Please pray for these clots to safely become smaller rather than a portion of one (or more of the) clots breaking free and then traveling in the blood stream to the lungs (i.e. pulmonary embolism, very scary). We will find out more about these tests tomorrow.

His kidneys and lungs are "hanging in there". They have not had to restart dialysis, and they are planning to do the bronchoscopies (or lung scopes) less frequently (about once a week), which is good (less risk of infection), but it is hard (for me) to wait to see how the connections are healing.

Deron had his first taste of Chinese take-out food today. :) It was good, but his taste buds have been affected by all the medications, and so it was not quite as good as he had hoped. There were two fortune cookies, and I had to laugh at the "fortunes:" (1) Act as if it is impossible to fail; and (2) A new adventure will bring lots of memories. Those are what prompted those verses today: (1) We know that with God leading us, it is impossible to fail, and (2) we know that this medical "adventure" that we are on will bring lots of memories of God's faithfulness and of many people "standing in the gap" for us. Thank you!

Psalm 34:8 Taste and see that the Lord is good; blessed is the man who takes refuge in him.

Last Day of Chemo

2009-09-10T13:17:00.003-05:00

This is the last day of mom's chemo - hopefully forever. Her oncologist was very surprised and impressed with her...he said her body was "very resilient" and he wasn't expecting her to do so well.

She has an appointment for a CT scan on Sept. 22. Her sister Linda will be in Brookings that week. Please keep praying.

Still "Pressing On"

2009-09-09T15:32:00.009-05:00

Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly, we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18 (NIV)

Please continue to pray for perseverance and patience for Deron. There has been definite and significant progress (during the last 55 days), and we know that it is because of the many prayers. We are grateful to all of you, and we give the ultimate thanks and praise to God. Deron has also told me it feels like it will still be a very long road-- with continued hurdles-- to "normalcy." It is sometimes overwhelming, and the days continue to seem long even though there is always something going on in his room (with the nurses, therapists, doctors, etc.)

Deron did have a bronchoscopy yesterday, and the lung connections looked "about the same." The right connection is still slightly soft but appears to be slowly continuing to heal, and the left connections still has some black (dying, unhealthy) tissue over it, but it is not worse. Last night, he had a "small" procedure where the fixed the connection of the feeding tube with interventional radiology. The end of the one of the tubes "had drifted" a little, but they apparently got it stitched in the right place now. Deron said it was somewhat painful, and he continues to feel a little sore in that area of his stomach.

With occupational therapy, Deron has been working on completing arm exercises while sitting on the edge of the bed (with someone behind him just in case he would lose his balance). With physical therapy, Deron is working on leg exercises and also working on using a slide board to "slide" himself over to a wheelchair while in a seated position. He still needs the help of 2-3 people to accomplish this, but he is getting stronger. And then he usually sits in the wheelchair for about an hour. They also occasionally work on "standing" with Deron needing the help of 3 people to accomplish a "near-standing" position for about 20 or so seconds.

Due to his continued need for steroids as part of the anti-rejection regimen, Deron still needs to have his blood sugar checked several times (3-4x) a day, and they give him insulin shots as necessary. (It still seems constant even though it has slowed down quite a bit from the blood sugar checks every 1-2 hours in the ICU.) His kidney function came back at 17% (slightly above 10%) so he hasn't needed dialysis for a while. They will continue to treat him with lasix and other medications as needed to control his electrolytes. Due to swelling and fragile skin, he experiences pain almost anytime anyone touches him. He feels like he is bruised all over. He also has some skin breakdown due to his fragile skin. I'm proud of Deron and how he is handling all of this. And we know that (through your prayers) the Holy Spirit is giving both Deron and I extra strength to persevere through this time. Thank you.

Romans 8: 26,28 (NIV)
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And we know that in all things, God works for the good of those who love Him who have been called according to his purpose.

Steady On

2009-09-06T12:09:00.004-05:00

Deron is having a "quiet" holiday week-end. The surgeons continue to keep an eye on Deron's abdomen and they seem less worried that Deron will need to go to surgery. The pulmonologists (or lung doctors) seem satisfied with his status at this point, and they will continue to do the scopes as needed. Deron continues to work on strengthening as able. Thanks for all the prayers.

Here in time

2009-09-05T14:31:00.007-05:00

Hello all.

I'm back, so to speak. It has been 50+ days since I've felt good enough to post, but my thoughts are ever with you.

I really appreciate all your prayers and thoughts. This will not be a long post as I can really only
use one hand to type (the other has a pulse oximeter attached to it and it's numb and edematous.

Many, many horrible and wonderful things to report, but they will have to wait for now.

Doing a Little Better

2009-09-04T22:50:00.010-05:00

Deron had another bronchoscopy today: The left connection looks a little bit better. There is still some black, dying tissue on the left lung connection, but it does look a little better than last time. Hopefully (and prayerfully), that layer will peel off and there will be healthy tissue underneath. The right connection also looks a little better. The tissue still looks fragile, but the holes are closing in!
They have been doing frequent abdominal CT scans with contrast (at high pressure and in different areas of the abdomen) to help them determine where this air in the abdomen is coming from. They do not yet have a definite answer. The surgeons are trying to keep a close watch on this air that was found in the abdomen because if there something wrong, they say Deron will get very ill very quickly, but they do not want to take him to surgery until they find out what the source of this unwanted air would be.
Deron is very swollen again throughout his legs, arms, and hands. He can't close either hand into a fist because they are so swollen, and his whole body is very sensitive to touch because of this swelling. They haven't done dialysis in a while, but they have been giving him some IV lasix to help with the fluid. They did a very specialized blood test to try to determine his kidney function, and they had to "send it out" to be read. We are still waiting for those results, and then they will decide about dialysis based on this test.
Deron hadn't been able to eat for a while and they had stopped the tube feeding as well because of all of the tests that they have been doing, so he was glad when he could have some supper tonight.
All-in-all, I feel Deron is getting good care. Deron slept a little better last night so that is an answer to prayer. And he continues to get a little stronger each day with therapy.

Psalm 28:7,8 (NASB)

The LORD is my strength and my shield;
My heart trusts in Him, and I am helped;
Therefore my heart exults,
And with my song I shall thank Him.
The LORD is their strength,
And He is a saving defense to His anointed.

Thanks to everyone on Team Arnold for their prayers!

Angry and Ugly

2009-09-02T18:49:00.002-05:00

Those are the terms the doctor used today to describe Deron's lung's left connection to the airway after a bronchoscopy. This is worse than it was the last time they scoped it. They saw some black tissue which they really didn't like. They took a CT scan, and it showed that things were not good, but not as bad as what they could be.

In addition, they still don't know what is causing air in his abdomen, but they are not yet planning surgery.

They plan to watch both situations carefully. Jan will add more details later. She has had a very long day.

Another "Minor" Procedure

2009-09-01T23:10:00.003-05:00

Well, a short time after Deron got back to his room from the abdominal scope, we found out he was going to have a "manipulation" for the gastic/feeding tube. It was ordered for ASAP, but the interventional radiologists were busy with emergency cases, and so Deron will probably undergo this procedure late tonight. And they are also planning another bronchoscopy early tomorrow morning. Please pray that Deron can get some sleep.

Deron Back in His Room

2009-09-01T20:00:00.003-05:00

God answered some fervent prayers...Deron did not have the exploratory surgery that seemed so certain. The doctors scoped him and thought the air may have been due to his feeding tube. They put some dye in him that will make it easier to see what is happening. They will do CT scans everyday to check. Hopefully, no further surgery will be necessary.

Oh, and I think I misunderstood Jan. I don't think the air is in the colon, they were afraid it was leaking out of the colon. I guess we all understand that we are supposed to have air in our colon ; )

The air that shouldn't be there is under the diaphram.

Praises and Prayer Requests

2009-09-01T19:49:00.010-05:00

We are so thankful that the surgeon felt he got a good enough look in the abdomen with the scope, and that he did not have "open Deron up" for exploratory surgery. As Dawn said, they are going to keep watch on this by doing daily CT scans so hopefully nothing else turns up.

We are also very happy that Deron is continuing to get stronger each day, and he stood for about 20 seconds for 3 times today (with assist of 2-3 people) so 20 seconds longer than yesterday!

Prayer Requests:
1. Please continue to pray for Deron to be able to rest and sleep well as we all know it is so important for healing. Deron slept very poorly last night.

2. Please pray for continued healing of all Deron's organ systems: abdominal/GI tract, lungs, kidneys, musculature, etc.

3. Please also pray for Max and Mark. It is getting long for them to not be able to be at home. I am so thankful that they can stay with Janelle, Scott, Emily, and Madison, and then I can see them each day, but the last couple times I have left to go to the hospital, Janelle and the girls have had to hold the boys because they were crying and running after me. Janelle and the girls are great, and they have a lot of fun there, but they just don't want me to go.

Deron in Surgery for Air in Colon

2009-09-01T17:52:00.002-05:00

Jan just called and said that they took Deron in to surgery to try to find out the cause of some air in his colon. This appears to be similar to what happened a couple of weeks ago, which they fixed with surgery, but ended in a hefty setback for Deron's recovery. Jan said they would do a scope first, but thought they would end up in exploratory surgery.

Things are "Looking Up"

2009-08-31T23:38:00.009-05:00

Psalm 121
I lift up my eyes to the hills.
From where does my help come?
My help comes from the LORD,
who made heaven and earth.
He will not let your foot be moved;
He who keeps you will not slumber.
Behold, he who keeps Israel
will neither slumber nor sleep.
The LORD is your keeper;
the LORD is your shade on your right hand.
The sun shall not strike you by day,
nor the moon by night.
The LORD will keep you from all evil;
he will keep your life.
The LORD will keep
your going out and your coming in
from this time forth and forevermore.

Things are starting to "look up" again, and we know it is because we keep looking to God for strength and because we have so many people holding us up in prayer. Thank you!

1. Deron has been sleeping better. 2. He has been able to enjoy eating a little bit more. 3. The ultrasound for the legs was negative for clots. 4. They were able to start a blood thinner which should help with the clots in the arms and right neck. 5. The new chest tube (which was placed in the left mid-back) has been very effective in draining the fluid off of the left lung.
6. And the big news is of course THERAPY:

Deron was able to tolerate sitting on the edge of the bed for 30 minutes with only minimal assist of one person while reaching and completing tasks, etc.

Deron's legs are still very weak, but he also stood for 20 seconds TWICE with the help of three people: one person to block each knee from buckling, and the third person (me) to help "bring up the rear." :) I was so excited!

They are holding on dialysis for a little while longer to see if they can get by with medications to help regulate fluid and electrolytes. They are probably going to do another bronchoscopy on Wednesday. We want to say a huge "THANK YOU" to the "Prayer Team Deron Arnold."

"Opportunity" for Great Joy

2009-08-29T23:08:00.004-05:00

James 1:2 Dear brothers and sisters, when trouble comes consider it an opportunity for great joy. Deron has had a tough couple of days for several reasons.

1. He continues to be in constant discomfort or pain.

It is nearly impossible to find a comfortable position with all the tubes that he has.
He feels short of breath often.
He has had a side effect of itchiness from one (or two) of his medications: important medications that they do not want to discontinue so they have prescribed IV benadryl and/or anti-itch cream, but these do not seem to help significantly.

2. He continues to have a lot of difficulty getting any sleep even when using (several) sleeping medications.

3. On Friday, we got some surprising and not-so-good news:

The "connection" of the left lung is not healing as well as we thought. It is folding in, which is making the airway narrow. The plan is that when the tissue seems strong enough to withstand the pressure, they will likely need to place a "balloon" down the airway to widen it out. (And the doctor said that they would probably need to do that several times.)

There has been some fluid in the left chest cavity on the outside of the lung--where it should not be--and it has been increasing so they would need to place a chest tube.

He has several blood clots in his right arm, several in his left arm, and one on the end of his dialysis line. These clots are not fully occluding the blood vessels so they are going to watch them. He hasn't been able to take any blood thinners for a while because his clotting factors (platelets) have been low. The platelet count has finally started to come up, and they think he should be able to restart a blood thinner on Monday.

Now onto today- Saturday: Deron had the chest tube inserted today. It was not extremely painful, but definitely uncomfortable. What made it so uncomfortable was that he had to lie in a position that made him short of breath and that compressed his stomach which was full from the constant tube feedings. Shortly after he got back to the room following the chest tube placement, he vomited twice, and he seemed like he just wanted to jump out of his skin. I spent 3 hours at his bedside trying to help him find a comfortable position (i.e. head of the bed up/down, covers on/fan off vs. covers off/fan on, etc) , but we never did find a comfortable position. He did receive pain medication and two anti-nausea meds through his IV, but they just seemed to "take the edge off."

When he finally did get settled down, he had to go to dialysis. He spent almost 5 hours in dialysis, and then he got back to his room around 7:30 p.m., and he wanted to eat supper but the kitchen was closed so I "cooked" him supper by warming up chicken noodle soup, and grabbing him some saltine crackers, cheerios, milk, coffee, and pudding, but before he even had the chance to eat anything, the transport people came to take him down for an ultrasound of his legs (to check for clots) and so he got back to his room about 8:30 and then I re-heated his soup, and helped him eat it while the nurse was busy re-connecting all his lines, getting his meds, etc.

(He needs some help eating sometimes because it is hard for him to tolerate sitting up straight enough in bed to allow him to swallow safely to reduce the risk of the food going into the lungs. And when the challenge to find a comfortable position combines with the weakness, decreased endurance, and shakiness (which is a side effect of the anti-rejection drugs), he appreciates help with especially soup, etc.)

The good news is that the chest tube has already drained a significant amount of fluid.
Also the "Good News" is that all of these situations are going to produce patience and endurance in our faith (James 1 and I Peter 1).

I asked Deron if he had anything he wanted to share with all of you. He said, "Being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ." Philippians 1:6

Changing of the Guard

2009-08-29T20:05:00.003-05:00

Megan and I drove back to IA today. Mom's sister Barb and her husband Rick came to Brookings to stay for the coming week. Mom's cousin Mary is coming from New York to stay for the week of Sept. 6th. Then Mom's sister Linda comes from Michigan for the next two weeks. That is the extent of her scheduled treatment. She'll have another PET scan after that.

Mom is eating really well. She wanted Pizza Hut pizza and breadsticks about every other day, and Megan and I had no problem with that. She also had (at her request) chicken pot pie 5 days running. She also eats a lot of nuts, cereal, well buttered toast and some really healthy juice. She is really a trooper. Please keep praying that no more cancer be present.

Teamwork!

2009-08-27T23:21:00.005-05:00

Deron had another bronchoscopy today. The pulmonary doctor had wanted to try wait until Friday; but this morning, Deron had some thick secretions that they could not get out with coughing or suction. Deron continues to have a lot of secretions as he is not able to be very mobile yet, and these secretions are more dangerous in his case as he had so many multi-resistant bacteria in his airways prior to getting the transplant. With the bronchoscopy, they could see that the "connections" were about the same, and they were able to clear out/clean up quite a few secretions, so that was good. The CT results from yesterday: the abdominal CT did not show anything out of the ordinary, and the chest CT continues to show some mild swelling on the outside of the lungs.
Deron is getting a little frustrated with the fact that he hears that he should do "this" or "that" to keep his lungs clear from one respiratory therapist or doctor, and then he can hear the exact opposite from the next respiratory therapist or doctor. But the good news is that we don't have to put our hopes in any of those doctor "teams," but rather we put our hope in the "Great Physician." And not only that, but we have "Team Deron Arnold" supporting us and pleading for us to the Trinity. Thank you and may God bless! :)

Tube Count

2009-08-26T22:14:00.008-05:00

Deron continues to have busy days with all the doctor teams, the wound/ostomy nurse for the colostomy, OT, PT, respiratory therapy, and speech therapy, etc. The big news continues to be eating. He had some apple sauce for "lunch", and he had his first "meal" tonight with supper: milk, juice, pudding, broth, and jello. He has been talking about eating for a while, but he did not have much of an appetite today. He continues to get good nutrition through his feeding tube so he can take the eating at his own pace.

I have been giving daily updates, but I don't always comment on everything that is going on. To give a better picture, I am going to do a "tube count:" 1. Trach with trach-dome (supplemental oxygen); 2 & 3. Dialysis lines (one in the artery, one in the vein in his right neck); 4,5,6. Triple IV line to the right arm (PICC line); 7,8,9. Triple IV line to the left chest (Subclavian); 10 & 11. Two chest tubes (one on each side); 12. Feeding tube (g-j tube); 13. Urinary catheter; and 14. Colostomy bag. He also has had a "draining wound" at the right lower abdomen that continues to be a bit of a mystery, but they have had to put a "bag" there to catch the drainage. Between his mid-line abdominal surgical incision, his transplant incision, constant EKG leads, oximetry probe, and the above mentioned "tubes," he doesn't seem to have any "untapped body parts" to put any more devices, but I should be careful because he did have 20+ tubes to start with. :)

Deron had a chest and abdominal CT scan today, but we don't know the results of that yet. The abdominal portion was a routine follow-up CT, and Deron requested the chest CT at the same time to help decide when they can pull the chest tubes. He continues to be very active in his care, and I think that is great. They are going to start doing the bronchoscopies every 5-7 days (to reduce infection risk) so the next one will likely be on Friday. And as Dawn already posted, a big highlight of today for Deron was that he talked to his mom and sister.

It's funny that almost everyone -- doctor, nurse, therapist, etc. -- comments on how Deron's room is constantly busy, and everyone also always comments on how hard he works. Deron continues to get very good care in this intermediate care or "step-down" unit, and we are glad it means continued steps forward to recovery. Please continue to also pray for peaceful sleep and rest for Deron. We can't say enough to thank everyone for their prayers for us. May God Bless You!

Phone Call

2009-08-26T17:48:00.001-05:00

Mom and I just got a call from Deron!! It was great hearing his voice. The last time we talked he told us he was going in for the transplant. It's been a long time. We didn't talk long, but it really gave us a boost.

Keep Up the Good Work!

2009-08-25T22:06:00.005-05:00

Deron continues to have very busy days. He is in the "intermediate care unit" of the hospital (6B). I was glad to find out that the nurses only have 2-3 patients because even though Deron is getting stronger every day, he continues to need a lot of care.

He sat on the edge of the bed today for about 12 minutes, which is a great improvement since this is only the second time he has practiced sitting on the edge of the bed since his abdominal surgery.

Deron had dialysis today. When he was in the ICU, they brought the dialysis machines to him, but today he took a trip (in his bed) to the dialysis unit, which is in the "old hospital" building. (Quite a trek.) Pastor Mike and Dennis Clark came to visit us while Deron was in dialysis, and we had a fun and interesting visit (as always). They thought he looked so much stronger than the last time they visited. They really enjoyed hearing Deron talk, and Deron got in just about as many jokes as Pastor Mike this time. :) Pastor Mike encouraged us with Psalm 33, and he also passed on a special message from a special prayer warrior from 1 Peter.

We truly want to thank all the prayer warriors who are "doing battle" for us. We feel truly blessed with all the prayer coverage that we have received, but we also want to say, "Go, Team, Go! Keep up the Good Work!"

P.S. We have changed our child care arrangements slightly: Max and Mark have been staying with my brother, Scott, and sister-in-law, Janelle, and their two girls, Emily (11) and Madison (8). We greatly appreciate that the boys can stay with Janelle during the day and that I can see the boys every night. It takes me about an hour to get from their house to the hospital and vice versa so I am spending more time traveling (and have less time for keeping everyone up to date). Please also pray for the boys continued adjustment to this situation and for safety with my travel. Thank you!

10 Years

2009-08-25T08:39:00.000-05:00

Gene Arnold

1943-1999

Ten years ago today, Dad went to be with the Lord. He died in the evening, right around 6:30.

C.S. Lewis wrote in A Grief Observed that he didn't have any good pictures of his deceased wife. I was thinking the same thing as I searched for this one today. I like this one, but it doesn't do him justice. He had just finished chemo, and the doctors were about to find that his cancer had spread. This was taken at my wedding. Deron and Jan's wedding was two weeks after this.

Moving on Up

2009-08-24T19:37:00.006-05:00

Deron had a bronchoscopy today, and it continues to show good healing in both "connections" and the surgical clip remains in the same place. We were worried before they looked down there with the scope because Deron had had some blood during one of the times that they suctioned him earlier in the morning but there were no signs of trauma to the airway. YEAH!

Deron had a very busy day again. Besides the bronchoscopy and the various "teams", he had wound nurse, physical therapy, occupational therapy, respiratory therapy (4 times), and speech therapy. The big news was speech therapy: Deron can officially have ice chips and sips of water. He was SOOO excited. The big worry it that if the eats too much too soon and the swallowing muscles cannot keep up to get the "food-stuff" into the esophagus, then it will go into the windpipe and into lungs. So he has to take things slowly, but he had a HUGE ICE FEAST today. Hopefully tomorrow onto apple juice, etc.

He is also planning to move rooms. He is moving from the 4th floor unit E to the 6th floor Unit B. We sincerely thank you for all the prayers.

More Praise!

2009-08-23T14:39:00.009-05:00

Deron continues to do very well on trach-dome, and they are talking about getting rid of the ventilator completely, and he will just use trach-dome (which gives him supplemental oxygen through the trach) during the day, and he can use a bi-pap at night.

He has gotten strong enough to start using a "speaking valve." It is so nice to hear his voice again! He does not wear it all the time, because when it is on, he does not get quite as much supplemental oxygen, but he is strong enough to be able to use it for short periods of time, and he has enjoyed having a "voice" in his care again. Praise The Lord!

He is asking about eating, and they are also talking about letting him try clear liquids in a day or two. They are also talking about moving him to the medical floor within a day or two! A big step: out of the ICU! Praise The Lord!

He is working hard and getting stronger in his arms and trunk muscles. His legs are still pretty weak, and he hasn't tried standing again yet. Also, he will need to continue on dialysis for a while as his kidneys still need the assistance, but they remain hopeful that his kidney function will eventually return.

Psalm 117: 1. Praise the Lord, all you nations. Praise Him, all you people of the earth. 2. For He loves us with unfailing love; the Lord's faithfulness endures for ever. Praise the Lord!

Thanks to the "Arnold Prayer Team"

2009-08-21T15:51:00.012-05:00

Praise the Lord!

Deron's continues to work on "trach-dome," which is one step closer to being off the ventilator. YEAH! (Remember "trach dome" is when there is no supporting pressure to the lungs only supplemental oxygen.) He is doing well with it, and he completed both his OT and PT sessions on "trach-dome" today.

They did another bronchoscopy today, and it went well. It shows continued healing of both the left and right airways. The surgical clip is in the same place, and it did not appear to be moving around as much as it did on the last scope. YEAH!

We are very happy and give praise to God for these very good signs, and we know they are the answers to many prayers.

Continued Concerns/Prayer Requests:
1. Sleep. Please continue to pray for Deron to receive restful sleep despite so many interruptions in the hospital.
2. Pain. Please continue to pray that Deron's pain would be minimal (to none).
3. Deron kidney function is very low. They think it is less than 5%. It still may have a chance to recover, but they don't know. (Only God knows.)
4. His muscle mass and muscle strength continues to be low. They figured out his muscle mass to be less than 20% of his pre-transplant muscle mass. He is strengthening, but he has lost so much muscle mass that the strength comes slowly.
5. Please also continue to pray for the lungs and abdomen to continue to heal as they have been. Thanks so much!

We greatly appreciate all the prayers! "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us - whatever we ask - we know that we have what we asked of him" (1 John 5:14-15).

Another Busy Day for Team Arnold

2009-08-20T21:12:00.005-05:00

Pastor Brad and Melissa Hopman stopped by today. (Thanks for the nice visit.) They got to see the medical ICU "team" in action. :) There is the head of the team, Dr. Arndt, and 6 other doctors-in-training that all put on their "uniform" of blue gloves and yellow isolation gowns to come in to see Deron. They didn't have too much to say today.

1. They said that we would just have to watch the surgical clip. They said if it did make it's way through "the connection" and make a hole, they "thought" it would eventually heal, and they would just have to suction the clip out. (Sounds easy, right?)

2. They said he could try "trach-dome" today. "Trach-dome" is when they put supplemental oxygen straight into his tracheostomy or "trach." This is one step closer to breathing on his own because it does not provide any supplemental pressure to hold the lungs open. He started it about 7:00 pm tonight, and he was tolerating it very well. They wanted him to start with at least 30-60 minutes, but at last count, he was going for a personal goal of 3 hours. GO, DERON, GO!

Another bronchoscopy awaits tomorrow. Hopefully, Deron can sleep well tonight since he didn't sleep all that well last night. Thanks again for all the prayers! We know we "can do all things through Christ who strengthens (us)." (Phil. 4: 13)

Team Deron Arnold

2009-08-19T21:37:00.009-05:00

Yesterday, Deron did "pressure support" from 9 a.m. to 7 p.m. He also sat up in the chair twice for about 1.5-2 hours each, had 4 respiratory therapy sessions, one official PT session, one official OT session, and two "unofficial" therapy sessions.
They also re-started the tube feedings again rather than just having him get his nutrition through IV. Deron was a "rock-star" yesterday according to his nurse, which is appropriate since it was his birthday.

This week there has been a new "team," in charge of Deron's care: the "medical ICU team." We are not as familiar with these doctors. This team did the bronchoscopy today to look at the lungs and clean out secretions. The bronchoscopy continues to show healing on the right and the left "soft spots." Today, there was a new development in that there was a surgical clip visible across from the "soft spot" on the right. The "medical ICU team" did not know exactly what to think about this. They were going to talk to the "transplant surgery team." I asked the assistant surgeon (fellow) to come to talk with us about it tonight because we hadn't heard anything. It was the first he had heard of it (in Deron's case). He said that they use those clips around the "connections" to help keep the arteries open. He said that it was not overly surprising that one would show up on the "scope" because he felt the airway are weak and soft all the way around. He did not feel that it was a "problem," but rather a "symptom of the problem." I asked him if the clip could make a "hole" since it looked like it was making it's way through the airway sideways. He said he would look at the pictures. So we are not quite sure what to make about that except that we know we should pray about it. :)

Besides the bronchosopy, today was also very busy. Deron did pressure support again for most of the day (except during the bronchoscopy due to the sedation that is required for that procedure). He had PT, OT, and respiratory therapy sessions. He sat on the edge of the bed for the first time since his abdominal surgery. This was difficult due to the abdominal incision pain, weakness, and also because the beds are very high and slippery so he only tolerated this for less than a minute, but that is an okay start. Deron's arms and hands are getting much stronger, but his legs are still quite weak.

He is keeping a good attitude and working hard to make progress in all the areas that he can control. I think we should make our own team: we will call it "Team Deron Arnold," and I think that everyone who is following along and praying for us on this journey is on the team. Thank you!

Chemo Day 2

2009-08-19T19:32:00.003-05:00

I remember spending a lot of time alone when I was little. I have a natural tendancy that way, and it was encouraged by Mom and Deron spending 2-3 hours a day in treatments and 1/2 hour jogging. One time when they were jogging and I was about 3, I decided it was a good time to go and get the scissors and do some cutting. I discovered I loved the way the scissors sounded when they were cutting through my hair. I did quite a job by the time Dad found out what I was doing.

Today I cut my mom's hair. It is all gone. We knew it would happen sometime. Today was the day.

Everyone says it will grow back, and it will, if the cancer doesn't overtake her body. Please keep praying for all aspects of our existance. Today was a tough day.

Chemo Round 2

2009-08-18T21:15:00.004-05:00

Mom had her first day of her second round of chemo today. It took all day in Sioux Falls, but her infusions on Wednesday and Thursday in Brookings will be much shorter.

Her oncologist thought she was tolerating the first dose from three weeks ago very well.

Please keep praying that this wipes out any remaining cancer cells...it sure is wiping out a lot of other cells. Had to get a new hat today. But we don't care if she does lose her hair if it can get rid of the cancer - or just if it could be "controllable" - if there is such a thing ; )

Happy Birthday Daddy Deron!

2009-08-18T14:52:00.003-05:00

We had a little party this morning in Deron's hospital room. The boys brought cards, balloons, and presents. The boys "helped" Deron open his presents, and we sang "Happy Birthday." He enjoyed looking at all the cards that everyone has sent. Thank you!

Deron completed a long pressure support trial this morning, and he did well with that. He had respiratory therapy, occupational therapy, and an "unofficial" PT session this morning, too. They are going to start doing the bronchoscopy every other day to reduce the risk of infection, etc. He continues to get stronger, slowly. Thanks to everyone for the "card shower."

Happy 38th Deron!

2009-08-18T06:41:00.002-05:00

This was right around Deron's 4th Birthday. This was also right around when Deron was diagnosed with CF. Lung transplants weren't even possible then.

Prayer Power!

2009-08-17T19:13:00.008-05:00

I am excited to be able to tell you that your prayers are working! The lung "connections" looked quite a bit better today! There has been an area of unhealthy tissue on both the left and right connections. The right one developed first; and it has been bigger and deeper, like a "hole." Today, during the bronchoscopy, the area on the right looked mostly pink and healthy, and the left looks as though there is also healthy tissue under the "soft spot."

His kidneys are starting to work, but he is swollen (up 20 lbs) so they did dialysis again today. He continues to have significant pain with all movements: exercises, rolling, sitting, etc. Deron completed his first pressure support trial today since his two-day surgery ordeal last Thursday to Friday. He is going to have to build up his muscle strength again for breathing and mobility. He continues to work hard, and we know that we are experiencing an extra measure of strength and grace in this time because of "prayer power."

Happy Pre-Birthday

2009-08-17T12:47:00.006-05:00

When Deron and I were little, he always wanted to extend his birthday celebration. One day was not enough. In addition to his actual birthday on Aug. 18th, we were also invited to celebrate his pre-birthday (the 17th) and his post-birthday (the 19th). He would lead us in a round of "Happy Pre-Birthday" (to the tune of the regular "Happy Birthday") himself. He also suggested extra presents, but that never caught on.

I wish I could be there to sing it to him today.

Some of you may want to send a card for his real birthday. Considering how late I am in posting this, you may actually want to send it for his post-birthday.

You can send mail to:

Deron Arnold

920 Delaware St. S.E.

Room 2008

Minneapolis, MN 55414

"Quiet" Day

2009-08-16T22:05:00.007-05:00

There is constant activity in Deron's room with the nurses, respiratory therapists, and OT/PT, etc., but it was "quiet" in that there were no major changes today. Deron had another bronchoscopy early this morning: Dr. Billings cleaned out quite a lot of secretions, but no major changes in the "connections." Deron did not need dialysis today so he has not had it since Friday night, and that seems good. He did get one unit of blood this evening since his hemoglobin was down to 7.7.

He participated in OT and PT sessions today, but his endurance runs out after about 10-15 minutes of activity. I gave him several additional therapy sessions of 10-15 minutes each throughout the day, but I feel like we have taken some backward steps due to the abdominal surgery: (1) his arm and leg muscles have lost strength due to the two days of inactivity, and (2) it is so much more painful to complete activities such as repositioning or rolling, etc. because of the abdominal incision. He continues to work hard, and I know we will start going forward again. We know forward progression goes hand-in-hand with prayer. We are claiming God's promises: "God is our Refuge and Strength, a very present help in trouble. Therefore, we will not fear, though the earth should change, and though the mountains slip into the sea (Ps. 46:1, 2). "Bless the Lord, O My Soul, and forget none of his benefits; who pardons all your inquities; and who heals all your diseases." (Ps. 103: 2, 3)

Thanks for all of the fun cards (get well and birthday) that have been sent this way. We are encouraged to know so many people are praying for and thinking of us.

More prayers = more power!

2009-08-15T22:23:00.007-05:00

Deron's bronchoscopies continue: He had one yesterday evening and this morning. No major changes in the lung "connections."

Even though Deron's abdominal incision is very "fresh" and even though Deron did not get much sleep last night, he got up to the chair today via the ceiling lift. He keeps working hard despite the bumpy road and "detours" we have had. I can tell he lost some muscle strength (esp. in his legs) over the last two days. And it will be painful to start working on unsupported sitting (edge of bed) again esp. since they left the abdominal incision open (so that any drainage will not collect in his abdomen and cause more infection). We would appreciate prayers that his abdomen, lungs, and muscles would heal well, and that the pain would be well controlled/minimal.

Communication remains somewhat difficult. As anyone who has had a conversation with Deron (or read his blog) can testify to: he is quite unique in how he sees the world and in the way that he phrases things. He has unique mannerisms and phrasing that I like to call "Deron-isms." So when we can only read his lips, it is sometimes difficult to guess what he is saying. He can write fairly well, but he has to be in a good sitting position to be able to write. I know it is frustrating for him to have to slow down, repeat himself, etc. so we would appreciate prayers for that as well.

The Rice Lab made a special delivery (through Pat Mikkelson) this evening: a BIG, colorful poster with lots of good wishes and some "Deron-isms." Thanks, guys! We really appreciate it! I also convinced Deron to open one of his birthday cards a few days early (from the Willmar E Free church staff). It is a BIG card that plays music. (It plays "Who let the dogs out" and it was signed from the whole "mutt-ley" crew. We want to thank you for signing it on the back. j/k :)

All-in-all, it was an okay day. We continue to feel God walking with us every step of the way, and we feel the support of all of you "at our backs." We appreciate all the prayers for we know that more prayers = more power!

Hopefully only Onward and Upward from Here!

2009-08-14T15:41:00.005-05:00

Deron just got out of surgery and back to his ICU room. The surgical team felt that everything went well. They placed another gastic tube and also a colostomy bag; both of which should be temporary, because they feel that his GI tract should heal with time. The surgeon said that all of the other tissue in the abdomen looked healthy. They feel that the antibiotics that he is on should treat his infection. Deron is going to be surprised when he wakes up and realizes that he "slept" through another whole day.

They haven't completed today's bronchoscopy yet today. I hope that this "procedure" does not bring any unexpected surprises (unless they are positive ones). I will keep "posting" because we are SO GRATEFUL for all of the PRAYERS!

Never a Dull Moment

2009-08-13T17:00:00.005-05:00

Deron started the day with pressure support for 2 hours. He continues to tolerate lower numbers (less support from the ventilator) so that is good. Dunitz did another bronchoscopy today: the secretions were slightly less and the "holes" do look the same on the "connection" on the right lung. There is also an area that looks soft (with infection) on the "connection" of the left lung, but so far that one is intact.

They decided today at 3:30 pm (based on a CT from this a.m. and the upper endoscopy yesterday) that Deron needed to go down to surgery to repair the gastric (stomach) tube that was placed with a scope procedure. It wasn't "tight," and it was leaking air into the abdominal cavity. They did an open procedure in order to take out the current tube, close the hole, and then also place another gastic tube. They had an unexpected discovery: they found an open area in the colon. The surgeon said that this was apparently due to infection that has broken through a relatively small area of the intestinal wall. The surgeon took out that part of the intestine, but he said he could not close it today because it would not heal. He is taking Deron back to surgery tomorrow and will place a colostomy bag (hopefully temporary). It will be another area for his body to work to heal. They are keeping Deron sedated until tomorrow so he doesn't know about this yet. Please pray for surgery to go well, and please continue to pray for healing. Thanks.

Step-by-step

2009-08-12T11:52:00.009-05:00

Deron looks good today. Deron was on pressure support for over about 3 hours this morning, and he did well with that. He even remained on "pressure support" during therapy. Deron wanted to try "take a few short steps," but we settled for sitting on the edge of the bed again today. He needed a little more assistance today (min-mod assist of 2 people) and he only tolerated about 8 minutes, but I'm so glad he continues to have the motivation and "drive" to keep working on everything.

I watched the bronchoscopy again today. The two holes continue to move toward each other. The surgeon and Dunitz both agree that the holes look like they are going to meet. Hopefully the outer wall of the airway will stay intact.

They tried a new IV antibiotic last night (after the reaction of the inhaled antibiotic subsided), and Deron tolerated that well. They were hoping for inhaled antibiotics, but Deron's airways are obviously too reactive. He had a similar reaction (bronchospasms, coughing, shortness of breath) with each inhaled antibiotic.

Other tidbits from today: (1) Dr. Dunitz changed the settings on the ventilator slightly, and said that Deron is getting closer to breathing on his own. He can "pull good volumes" but needs to continue to work on his endurance with the respiratory muscles. He will have another pressure support trial later today after his upper endoscopy and dialysis. (2) They are doing an upper endoscopy to see if there was damage to the stomach when the g-tube was put in as there continues to be air and that area of blood in the abdominal cavity. (3) Tomorrow they will do another bronchoscopy as they continue to clear out significant secretions each day, and they are also going to do a flexible sigmoidoscopy tomorrow as Deron continues to have inflammation in the colon, too.

They know how to keep him busy. I joked with Deron that I was going to go shopping since he was going to be so heavily sedated this afternoon, but I think I am just going to take a nap.