Forgive me for taking so long in getting this out...other than our email server being down a couple of days, I have no excuse!
We saw both Dr. M (hematologist/oncologist) and Dr. A (GI) last week.
Dr. M was pleased with Ron's blood levels staying consistent over the last month, so he's now going to have his anti-factor Xa (that's 10a) checked monthly. (Although, we got a call this week saying there was a major problem with his draw from when he was there and they wanted it rechecked ASAP. We should hear something back in the next couple of days; hopefully it was just a lab error). Good news is: Ron only has to see him every 3-4 months now...unless a problem shows up on routine lab results.
Dr. A was excited to add a couple of new medications with some definite goals in mind. With the number one goal being to get the yakking under control so Ron's esophagus can heal! And number two, to be able to return to more normal eating (without yakking).
One of the new meds is an old muscle relaxant (Baclofen) which has also shown to have the opposite effect on the GastroEsophageal Juncture (valve connecting the esophagus and the stomach) causing it to clamp down instead, thus keeping stuff from coming back up and hopefully reducing yakking. He is to take 1/2 dose 30 minutes before meals and at bedtime.
The second one is an over-the-counter antacid (Gaviscon) which has a seaweed base. This is taken after eating (whether it be a meal, snack, etc). The seaweed expands and acts as a barrier to keep food, bile, acid, etc from coming back up.
Ron says the Gaviscon is nasty to take. He feels like it's "growing" as he chews it...Yuck!
We were given a time table of two weeks...if it's going to work, we should see definite improvement within two weeks.
The first couple of days were really rough ones. As with most muscle relaxants, Baclofen can have a sedation effect; and it really knocked Ron on his tail! He was sleeping until noon, then getting up and sleeping in the recliner all afternoon. This combined with overall lethargy and stomach pain had him feeling quite puny. We ended up having to reduce the dose to 1/4.
Unfortunately, thus far, he has had no changes. Still yakking daily, along with major reflux. Yakking so violently last week, that he pulled a muscle; ugh! But hey, the muscle relaxant helped with that!
Tomorrow, Friday, we are to try to increase back up to 1/2 dose and see if his system can handle it. If not, they will have no choice but to discontinue this medication since it is obvious the 1/4 dose is doing nothing.
Please pray for an uneventful weekend for Ron, with no added side effects. We'd also love to see some clear improvement.
Much love,
Christie
A couple of Sunday's ago, our church was incredibly blessed to have Charles Billingsly lead us in worship. Below is one of the many songs that spoke to me.
Lord I Run to You
Lord I run to You
No one else will do
Lord in troubled time
I will run straight to You
Though my heart and flesh may fail
You're my ever present help
My tower of strength
My portion ever more
Lord I run to You
No one else will do
Lord You said we'd face
Trouble, pain and fear
But to be of good cheer
Be of good cheer
For You have overcome
Overcome the world
I lift my eyes up
To the mountains
Where does my help come from
It comes from You Lord
You are the Maker of heaven and earth
And there's nothing that's too hard for You
Thursday, August 5, 2010
Tuesday, July 27, 2010
Waiting on God's Best
Continuing my current ponderings as I read The Life God Blesses
Jim Cymbala states:
The challenge before us is to have faith in God, and the hardest part of faith is the waiting. ... To receive the blessing we need, we must believe and keep on believing, to wait and keep on waiting. We need to wait in prayer, wait with our Bibles open as we confess His promises, wait in joyful praise and worship of the God who will never forget our case, and wait as we continue serving others in His name.
We've come to realize Ron's medical issues have been going on for so long now; the seemingly endless waiting causing us to grow so weary, we no longer know what to pray. As we discussed and pondered, we were reminded that throughout the New Testament when people came to Jesus He would point blank ask them "what do you want from Me?"
Reflecting on His directness has caused us to step back and evaluate...what do we want from Him? Seems like an easy enough question:
- We want Ron to be healed.
- We want a "normal" life....one where we don't have to be tied to a schedule that revolves around home health, lab draws, doctor visits, PICC line maintenance, medication schedules and TPN management/administration.
- We want to put behind us the overwhelming financial burdens brought on by continued medical issues.
- We want our children to not have to worry about school loans they've had to take over due to our inability to help out.
The list of wants could go on and on!
There's nothing wrong with wanting these things. Hey, even Jesus wanted things to be easier.
"My Father! If it is possible, let this cup of suffering be taken away from me...." Matthew 26:39
And it's recorded in Luke 22:44 that:
"He was in such agony of spirit, that His sweat fell to the ground like great drops of blood"
before concluding in Matthew:
"Yet I want Your will not Mine"
As we examine this question, what do we truly want from Him, we find:
as hard as the last few years have been, (we would not wish those trials on anyone!) we can honestly say we wouldn't trade what we've learned, how we've grown, the blessing of experiencing God at work and the encouragement and provision we've received through His people, for anything!
C. S. Lewis so profoundly wrote:
"We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."
Ouch! We resemble that!
And still, we have the waiting...
Yet, just when it seems we can't take it any longer; God sends a glimmer of hope! We received an e-mail message from Dr. A (GI):
"I had a great discussion with one of the US experts on reflux disease regarding you and have great ideas to move forward with. I am very hopeful and excited about the new options."
Ron already had an appointment scheduled for tomorrow (Wednesday) with the hematologist/oncologist at Presby, so Dr. A said to come by to see him while there and he'd go over these exciting new options with us.
We are cautiously optimistic. We're trying not to get our hopes up too much, but we want to believe God does have a plan for Ron's complete healing. Could it even begin this week?
Please join us in praying. Oh, how we want Ron to be healed! But, above all else, pray that no matter how things turn out; we will continue to keep the faith. We will continue to believe His sovereign will is truly what is best for us, no matter how painful it may be at times. And that our desires, will fall in line with His will.
Oh, and please be patient with us in getting out an update...though we meet with Dr. A tomorrow, it's to go over a new plan of action; we most likely won't have any definitives for a while.
Much love!
"On You I wait all the day" Psalm 25:5
"Wait on the Lord; be of good courage and He shall strengthen your heart; wait, I say, on the Lord." Psalm 27:14
"I waited patiently for the Lord to help me, and He turned to me and heard my cry." Psalm 40:1 NLT
Sunday, July 25, 2010
Engraved on the palms of His hands
One of the books I've been reading this summer is The Life God Blesses by Jim Cymbala (pastor of the Brooklyn Tabernacle). Though it is a very small, short book; it is packed with wonderful nuggets of truth that speak volumes to my heart.
Many thoughts to share, but for now...chew on this selected (condensed) excerpt:
Throughout history men and women who trusted the Lord have had to learn the importance of "the last half hour"; one of the lessons we learn from Isaiah 49:8
"This is what the LORD says: 'In the time of my favor I will answer you, and in the day of salvation I will help you.' "
God affirms the fact that He will answer and will help His people. But notice the time of His help and answers: "In the time of my favor...and in the day of salvation." God has a designated time when His promise will be fulfilled and the prayer will be answered. It is a [time] He knows is best for the help to arrive and the deliverance to be accomplished. His answer is absolutely sure for those who trust Him, but it is not yet.
Herein lies the battle of faith - to hold on and keep believing God despite what our natural senses tell us. Our challenge is to wait in faith.
How many times have we battled this seeming contradiction? We pray with all our hearts and take our stand on His Word. But then...nothing, absolutely nothing seems to change. No miracle comes; no dramatic change occurs in our difficult situation. In fact, sometimes our circumstances seem to worsen!
God knows our tendency to give up during these seeming times of silence from heaven. "But Zion said, 'The LORD has forsaken me, the LORD has forgotten me' " (Isaiah 49:14).
Because the people of God back in Isaiah's day didn't see the fulfillment of the promise, they felt abandoned. "Where is God in all this?" they asked. "How can His promise be true? He must have forgotten or forsaken us..."
God, who is always grieved when His people fail to trust Him, responded immediately: "Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you! I have engraved you on the palms of My hands; your walls are ever before me." (v. 15-16)
We should shout with joy when we read, "I have engraved you on the palms of My hands."
No matter which difficulties we face or how badly life seems to be going, we must cling to God's unchanging promise "I will not forget you!" We need not be discouraged by what we see or distracted by how we feel emotionally; this truth is forever settled, "I will not forget you!"
More on this to come... :-)
Saturday, July 24, 2010
Remembering Papa
It's been a very busy, exhausting week (both physically and emotionally). A time of honoring Papa's home-going with both sadness and joy. The majority of the CAN clan members were able to gather, share and reminisce. Grandma did pretty well. She was confused at times, but on the whole understood what was going on.
Tuesday's visitation/remembrance was a sweet time with family and friends. The funeral home made a very nice DVD, from photos we had provided of Papa, which played throughout the time we were there. These photos were a reminder that no matter what was going on, you could always count on Papa to flash that great smile when called upon! He could be in the grumpiest mood and yet could turn on a that smile for the camera!
Wednesday's military burial was beautiful; including a pleasant breeze under the shade of the pavilion. I'm so proud of my hubby! I wish all of you could have been there to hear him eulogize his dad.
He began with Colossians 3:5 -
"For though I am absent from you in body, I am present with you in spirit and delight to see how orderly you are and how firm your faith in Christ is."
A very fitting verse that epitomizes what Papa would hope for each of his family members; to be orderly and to be firm in their faith.
And then he read Psalm 23 and shared his thoughts (with special emphasis on verse 4):
"even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me"
It was incredibly moving to hear him share his experience with this particular subject. He related how during one of his "dying spells", as he lay at death's door, how evident it was that he was not alone. He had an incredible peace in knowing God was with him; there was no fear, no anxiety...only peace. Having this knowledge gave him much comfort in knowing Papa was able to experience this same peace as he was ushered home.
Laurie's husband Tony shared as well, challenging us to carry on what Papa had begun. Two of Papa's most used phrases were "carry on" and "take care of it". And we do, Papa, pledge to "carry on" the character and values you instilled. We will "take care of it"...our families, our friends, our jobs, our faith and all that God has called us to; and do our best to uphold the legacy you have entrusted to each of us.
And then Ken led us in singing Amazing Grace.
It is isn't it? God's grace is so amazing! Sometimes we get bogged down by the busy-ness of this world and it takes a life-changing event to remind us of just how amazing God's grace really is.
Thank you for sharing in our time of grief, even if you were not able to be with us physically. Your words of sympathy and encouragement in cards, e-mails, texts, etc., have been so thoughtful. I apologize for not returning messages and phone calls, hope to remedy that soon.
Tuesday's visitation/remembrance was a sweet time with family and friends. The funeral home made a very nice DVD, from photos we had provided of Papa, which played throughout the time we were there. These photos were a reminder that no matter what was going on, you could always count on Papa to flash that great smile when called upon! He could be in the grumpiest mood and yet could turn on a that smile for the camera!
Wednesday's military burial was beautiful; including a pleasant breeze under the shade of the pavilion. I'm so proud of my hubby! I wish all of you could have been there to hear him eulogize his dad.
He began with Colossians 3:5 -
"For though I am absent from you in body, I am present with you in spirit and delight to see how orderly you are and how firm your faith in Christ is."
A very fitting verse that epitomizes what Papa would hope for each of his family members; to be orderly and to be firm in their faith.
And then he read Psalm 23 and shared his thoughts (with special emphasis on verse 4):
"even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me"
It was incredibly moving to hear him share his experience with this particular subject. He related how during one of his "dying spells", as he lay at death's door, how evident it was that he was not alone. He had an incredible peace in knowing God was with him; there was no fear, no anxiety...only peace. Having this knowledge gave him much comfort in knowing Papa was able to experience this same peace as he was ushered home.
Laurie's husband Tony shared as well, challenging us to carry on what Papa had begun. Two of Papa's most used phrases were "carry on" and "take care of it". And we do, Papa, pledge to "carry on" the character and values you instilled. We will "take care of it"...our families, our friends, our jobs, our faith and all that God has called us to; and do our best to uphold the legacy you have entrusted to each of us.
And then Ken led us in singing Amazing Grace.
It is isn't it? God's grace is so amazing! Sometimes we get bogged down by the busy-ness of this world and it takes a life-changing event to remind us of just how amazing God's grace really is.
Thank you for sharing in our time of grief, even if you were not able to be with us physically. Your words of sympathy and encouragement in cards, e-mails, texts, etc., have been so thoughtful. I apologize for not returning messages and phone calls, hope to remedy that soon.
Sunday, July 18, 2010
Charles Arthur "Papa" Nordell
Good morning!
I've been trying to get this out since Friday but it's been difficult, both physically and emotionally.
Thursday night at 10:15 we received a call from Ron's brother, Ken, informing us their dad (Papa) had been found unresponsive with very low oxygen rate and was being taken by ambulance to Baylor All-Saints. We headed there immediately...such pros at this that we beat the ambulance there!
It was evident Papa was in very bad shape. Unfortunately, his DNR paperwork had not been sent with him and they immediately intubated him and put an external pacemaker on him. After an hour and a half, we were informed the doctor wanted to meet with us in the family conference room. Fortunately, Ken, Shar, Laurie and Tony all arrived just as the doctor was coming to meet with us.
We were told Papa was heavily sedated to keep him from fighting the ventilator, as well as all of the other treatments taking place. He had pneumonia, he was not able to maintain an adequate heart rate and/or blood pressure without the intervention of meds and he looked to be in septic shock. They were also doing a CT scan to see if he had a stroke or a brain bleed of some sort. The doctor was informed he had DNR paperwork in effect. Being that he was on full life support, his wishes had definitely been violated.
We contacted Kathie and Leonard and were all in agreement this is NOT what Papa would want. We chose to keep him on life support until family could arrive. Once he was settled in CardioVascular ICU we headed home (4:30 AM) to get a couple hours of sleep.
Ken & Shar arrived early enough to meet with the doctor who informed them he was definitely in septic shock as well as acute renal failure on top of the other issues, however he had been taken off the pacemaker before transporting to CVICU and his heart had been maintaining on it's own throughout the night. They did begin to wean him off of sedation and he was aware and responsive to questions...squeezing hands and nodding to yes/no questions. Ryan arrived and was able to communicate with him as well. The rest of the family was scheduled to arrive around 9:30.
At 8:45, we received a call from Ryan telling us Papa had gone into complete heart failure.
Typical of Papa, he determined to do things his way and continued to have automatic reflexive breathing (even though there was no heart or brain activity!). What a blessing for the family to arrive and see Papa as though he were sleeping, complete with snoring. He drew his last breath at 10:45. There was no pain, no prolonged suffering...he peacefully went to sleep, surrounded by his loved ones. We were so thankful he went this way, without us having to take him off life support; what a comfort to us.
We all went together to talk to Mom (Grandma). We weren't sure how she would respond but she did very well considering. She was a little confused at first, thinking we were talking about her Dad (she has dementia) but after going over things again, she understood.
The siblings and spouses met at the funeral home Saturday morning and had a very easy (although very lengthy!) time making arrangements for Papa. Everyone was in agreement as to what Papa would have wanted. What a privilege to go through Papa's Bible and choose some things that were obviously meaningful to him. He was a man of few words; however he was consistent in his thoughts and beliefs whether they were popular or not!
We then took the opportunity while everyone was around to clear out Papa's room and disperse his belongings.
Papa could be a stubborn old coot, but his family was EVERYTHING to him and he leaves behind a wonderful legacy, as well as a very large family. He dubbed his family the CAN (Charles Arthur Nordell) clan!
wife, Ruth...they would have celebrated their 65th anniversary August 1.
first born:
Kathie, husband: Terry, of Whitehouse and children:
Jason, wife: Christie, children: Max & Taylor of Abilene
Josh of Tyler
Kristin, husband: John, kids: Kayla and Carson of Houston
Michael, wife: Rachael, daughter: Esther in transit to mission work in Brazil
Ken, wife: Shar; of Jacksboro and daughter:
Nikki of Lubbock
Leonard, wife: Nancy of El Paso and children:
Davis, wife: Ashley of Albuquerque
Lianna, husband: Blake of Tucson
Laurie, husband, Tony of Mesquite and children:
Jeremy, wife: Julie, children: Jonah, Hudson and Malorie Kate of Austin
Whitney, husband: Jorden of McKinney
Zach of Austin
and the baby:
Ron, wife: Christie of North Richland Hills and children:
Ryan, wife Stacee and daughters: Mila and Ella of Fort Worth
Aaron of Addison
Siblings (Papa was the second oldest of 5):
Louise, husband, Gordon (Louise passed away this same afternoon after a lengthy illness)
Mildred, husband, Glen
Yvonne
Dean, wife: Char
Couple of things found in Papa's Bible:
"Let all things be done decently and in order"
I Corinthians 14:40
This verse fits Papa perfectly!
Papa had written this in his Bible:
Christian:
CHRIST- is all
I- I
A-am
N-nothing
We love you Papa! You are greatly missed!
We Will Remember!!!
FORT WORTH -- Charles Arthur Nordell, 90, passed away on Friday, July 16, 2010.
Service: 10:15 a.m. Wednesday in Dallas-Fort Worth National Cemetery. Visitation: 1 to 3 p.m. Tuesday at Laurel Land Funeral Home of Fort Worth.
Chuck was born Dec. 4, 1919, in Greeley, Colo., to Arthur and Irene Nordell. He married Ruth Love on Aug. 1, 1945, in New Jersey. He served as a Major in the U.S. Army during World War II. He retired as a Civil Engineer with Texaco.
Survivors: He is survived by his loving wife of 64 years, Ruth Nordell; children, Kathie Koch and husband, Terry, Ken Nordell and wife, Shar, Leonard Nordell and wife, Nancy, Laurie Apel and husband, Tony, Ron Nordell and wife, Christie; 20 grandchildren and spouses; 10 great-grandchildren; one brother; and three sisters.
I've been trying to get this out since Friday but it's been difficult, both physically and emotionally.
Thursday night at 10:15 we received a call from Ron's brother, Ken, informing us their dad (Papa) had been found unresponsive with very low oxygen rate and was being taken by ambulance to Baylor All-Saints. We headed there immediately...such pros at this that we beat the ambulance there!
It was evident Papa was in very bad shape. Unfortunately, his DNR paperwork had not been sent with him and they immediately intubated him and put an external pacemaker on him. After an hour and a half, we were informed the doctor wanted to meet with us in the family conference room. Fortunately, Ken, Shar, Laurie and Tony all arrived just as the doctor was coming to meet with us.
We were told Papa was heavily sedated to keep him from fighting the ventilator, as well as all of the other treatments taking place. He had pneumonia, he was not able to maintain an adequate heart rate and/or blood pressure without the intervention of meds and he looked to be in septic shock. They were also doing a CT scan to see if he had a stroke or a brain bleed of some sort. The doctor was informed he had DNR paperwork in effect. Being that he was on full life support, his wishes had definitely been violated.
We contacted Kathie and Leonard and were all in agreement this is NOT what Papa would want. We chose to keep him on life support until family could arrive. Once he was settled in CardioVascular ICU we headed home (4:30 AM) to get a couple hours of sleep.
Ken & Shar arrived early enough to meet with the doctor who informed them he was definitely in septic shock as well as acute renal failure on top of the other issues, however he had been taken off the pacemaker before transporting to CVICU and his heart had been maintaining on it's own throughout the night. They did begin to wean him off of sedation and he was aware and responsive to questions...squeezing hands and nodding to yes/no questions. Ryan arrived and was able to communicate with him as well. The rest of the family was scheduled to arrive around 9:30.
At 8:45, we received a call from Ryan telling us Papa had gone into complete heart failure.
Typical of Papa, he determined to do things his way and continued to have automatic reflexive breathing (even though there was no heart or brain activity!). What a blessing for the family to arrive and see Papa as though he were sleeping, complete with snoring. He drew his last breath at 10:45. There was no pain, no prolonged suffering...he peacefully went to sleep, surrounded by his loved ones. We were so thankful he went this way, without us having to take him off life support; what a comfort to us.
We all went together to talk to Mom (Grandma). We weren't sure how she would respond but she did very well considering. She was a little confused at first, thinking we were talking about her Dad (she has dementia) but after going over things again, she understood.
The siblings and spouses met at the funeral home Saturday morning and had a very easy (although very lengthy!) time making arrangements for Papa. Everyone was in agreement as to what Papa would have wanted. What a privilege to go through Papa's Bible and choose some things that were obviously meaningful to him. He was a man of few words; however he was consistent in his thoughts and beliefs whether they were popular or not!
We then took the opportunity while everyone was around to clear out Papa's room and disperse his belongings.
Papa could be a stubborn old coot, but his family was EVERYTHING to him and he leaves behind a wonderful legacy, as well as a very large family. He dubbed his family the CAN (Charles Arthur Nordell) clan!
wife, Ruth...they would have celebrated their 65th anniversary August 1.
first born:
Kathie, husband: Terry, of Whitehouse and children:
Jason, wife: Christie, children: Max & Taylor of Abilene
Josh of Tyler
Kristin, husband: John, kids: Kayla and Carson of Houston
Michael, wife: Rachael, daughter: Esther in transit to mission work in Brazil
Ken, wife: Shar; of Jacksboro and daughter:
Nikki of Lubbock
Leonard, wife: Nancy of El Paso and children:
Davis, wife: Ashley of Albuquerque
Lianna, husband: Blake of Tucson
Laurie, husband, Tony of Mesquite and children:
Jeremy, wife: Julie, children: Jonah, Hudson and Malorie Kate of Austin
Whitney, husband: Jorden of McKinney
Zach of Austin
and the baby:
Ron, wife: Christie of North Richland Hills and children:
Ryan, wife Stacee and daughters: Mila and Ella of Fort Worth
Aaron of Addison
Siblings (Papa was the second oldest of 5):
Louise, husband, Gordon (Louise passed away this same afternoon after a lengthy illness)
Mildred, husband, Glen
Yvonne
Dean, wife: Char
Couple of things found in Papa's Bible:
"Let all things be done decently and in order"
I Corinthians 14:40
This verse fits Papa perfectly!
Papa had written this in his Bible:
Christian:
CHRIST- is all
I- I
A-am
N-nothing
We love you Papa! You are greatly missed!
We Will Remember!!!
FORT WORTH -- Charles Arthur Nordell, 90, passed away on Friday, July 16, 2010.
Service: 10:15 a.m. Wednesday in Dallas-Fort Worth National Cemetery. Visitation: 1 to 3 p.m. Tuesday at Laurel Land Funeral Home of Fort Worth.
Chuck was born Dec. 4, 1919, in Greeley, Colo., to Arthur and Irene Nordell. He married Ruth Love on Aug. 1, 1945, in New Jersey. He served as a Major in the U.S. Army during World War II. He retired as a Civil Engineer with Texaco.
Survivors: He is survived by his loving wife of 64 years, Ruth Nordell; children, Kathie Koch and husband, Terry, Ken Nordell and wife, Shar, Leonard Nordell and wife, Nancy, Laurie Apel and husband, Tony, Ron Nordell and wife, Christie; 20 grandchildren and spouses; 10 great-grandchildren; one brother; and three sisters.
Tuesday, July 13, 2010
Results are in...
Sorry we're just now getting out an update, we were waiting for official report from Dr. A who was waiting on pathology reports. May be more information than you want to know, but some wanted details and I only wanted to do one mass e-mail.
Findings from endoscopy and colonoscopy:
1. Severe erosive esophagitis from the upper esophagus to the lower esophagus – no evidence of fungal infection or viral infection. Biopsies consistent with severe esophagitis related to reflux of gastric acid. (Dr. A remarked his esophagus is worse than on last study and looks like raw hamburger meat...YIKES!)
2. Significant amount of retained fluid in the stomach consistent with gastroparesis (paralyzed stomach or poor gastric motility)
3. Moderately sized hiatal hernia – allows more reflux from stomach into esophagus
4. Small ulcer in stomach with nearby polyp. Biopsies reveal acute and chronic gastritis – inflammation of the gastric lining without evidence of bacterial or viral infection.
5. The pylorus (valve between stomach and duodenum) thickness as noted on Upper GI, was likely related to nearby ulcer.
6. The small intestine lining look healthy with normal looking villi (finger like projections). The beginning of the duodenum as it leaves the stomach had an abnormal configuration due to previous surgery and scars but not significantly blocked.
7. The small intestine appeared to move but there was reflux of digestive juices from dilated portions of the small bowel. Biopsies from the small intestine were normal without evidence of infection or inflammation
8. Altered folds in the colon on the left side of the abdomen, likely related to scars, possibly from previous drains in that area while transverse section has sharp angles (zig zag effect) making more prone to blockage.
9. Dilated superficial veins in the colon in the right side of the abdomen related to extensive previous surgeries and scarring that altered the route of blood return from the colon to the inferior vena cava. Nothing to do about but be aware; due to blood thinner therapy, if any rectal bleeding occurs seek medical attention immediately.
10. Small polyp in the ascending colon in the right side of the abdomen. This polyp was a tubular adenoma. Not cancerous but if left in, could develop into cancer in 5-10 years. Therefore, need repeat routine colonoscopy in 5 years.
Plan:
1. Continue Nexium twice daily for acid suppression
2. Trying to get answers about using Misoprostol to help protect the stomach and assist with GI motility; greatest concern is the effect on kidney function. In other people, it would be less of a concern, but with only one kidney, concerns for possible detrimental effects are raised. One nephrologist said no concern, another said don’t use, another said he had never thought about it. Not reassuring, so still polling colleagues
3. Continue Metoclopramide for now but increase dosing to more frequent use to increase GI motility and hopefully lessen reflux/vomiting.
4. Another option is Erythromycin. An old antibiotic that would make everybody nauseous, now use it at lower doses to spur stomach motility. Inexpensive but dosed like metoclopramide – 4x/day.
On a better note; we've kept quite busy the last couple of weeks with lots of time spent with family. We had a great 4th of July spent at the lake. Since Ron had to be off the blood thinner for 5 days preceding EGD/Colonoscopy, he was able to really enjoy his time there. He rode the jet ski and played a little water volleyball. It was so good to see him have fun! It totally wore him out for several days, but he says it was well worth it. Unfortunately, he started back on the blood thinner Wednesday so play time is over.
Last weekend we enjoyed more fun with family in town. We were so excited to get tickets to the Friday night Ranger game (yippee for $10 ticket nights...complete with fireworks!) but with all the rain we had, the game was delayed until 9:30 PM. We took advantage of the delay by inviting the family to our house for homemade ice cream and a hilarious time playing MadGab. We did go out to watch the game in it's entirity (until 1:30 AM) only to find they cancelled the fireworks, announcing it after the game was over!
Saturday, the guys golfed and the girls enjoyed spending the day with our sweet Mila and Ella while Stacee and Ryan both worked. Ron was able to sleep in a little and then meet up with the guys for lunch while I grocery shopped and caught up on some household items before all joining up for dinner and an evening visit with Mom and Dad Nordell.
It's always good to have the family around, something we've too often taken for granted over the years. We are incredibly blessed to have such supportive, encouraging family members and the opportunity to see the majority of them throughout the last month has indeed been a treat.
Alot of information to take in. Ron was disappointed they didn't find something that they could "fix". Please continue to pray for wise discernment as to treatment; as well as complete healing, along with patience and hope as we wait!
Much love, Christie
"He is a wise man who does not grieve for the things which he has not but rejoices for those which he has." Epictetus
"Godliness with contentment is great gain." I Timothy 6:6
"But I trust in Your unfailing love; my heart rejoices in Your salvation. I will sing to the Lord, for He has been good to me." Psalm 13:5-6
Findings from endoscopy and colonoscopy:
1. Severe erosive esophagitis from the upper esophagus to the lower esophagus – no evidence of fungal infection or viral infection. Biopsies consistent with severe esophagitis related to reflux of gastric acid. (Dr. A remarked his esophagus is worse than on last study and looks like raw hamburger meat...YIKES!)
2. Significant amount of retained fluid in the stomach consistent with gastroparesis (paralyzed stomach or poor gastric motility)
3. Moderately sized hiatal hernia – allows more reflux from stomach into esophagus
4. Small ulcer in stomach with nearby polyp. Biopsies reveal acute and chronic gastritis – inflammation of the gastric lining without evidence of bacterial or viral infection.
5. The pylorus (valve between stomach and duodenum) thickness as noted on Upper GI, was likely related to nearby ulcer.
6. The small intestine lining look healthy with normal looking villi (finger like projections). The beginning of the duodenum as it leaves the stomach had an abnormal configuration due to previous surgery and scars but not significantly blocked.
7. The small intestine appeared to move but there was reflux of digestive juices from dilated portions of the small bowel. Biopsies from the small intestine were normal without evidence of infection or inflammation
8. Altered folds in the colon on the left side of the abdomen, likely related to scars, possibly from previous drains in that area while transverse section has sharp angles (zig zag effect) making more prone to blockage.
9. Dilated superficial veins in the colon in the right side of the abdomen related to extensive previous surgeries and scarring that altered the route of blood return from the colon to the inferior vena cava. Nothing to do about but be aware; due to blood thinner therapy, if any rectal bleeding occurs seek medical attention immediately.
10. Small polyp in the ascending colon in the right side of the abdomen. This polyp was a tubular adenoma. Not cancerous but if left in, could develop into cancer in 5-10 years. Therefore, need repeat routine colonoscopy in 5 years.
Plan:
1. Continue Nexium twice daily for acid suppression
2. Trying to get answers about using Misoprostol to help protect the stomach and assist with GI motility; greatest concern is the effect on kidney function. In other people, it would be less of a concern, but with only one kidney, concerns for possible detrimental effects are raised. One nephrologist said no concern, another said don’t use, another said he had never thought about it. Not reassuring, so still polling colleagues
3. Continue Metoclopramide for now but increase dosing to more frequent use to increase GI motility and hopefully lessen reflux/vomiting.
4. Another option is Erythromycin. An old antibiotic that would make everybody nauseous, now use it at lower doses to spur stomach motility. Inexpensive but dosed like metoclopramide – 4x/day.
On a better note; we've kept quite busy the last couple of weeks with lots of time spent with family. We had a great 4th of July spent at the lake. Since Ron had to be off the blood thinner for 5 days preceding EGD/Colonoscopy, he was able to really enjoy his time there. He rode the jet ski and played a little water volleyball. It was so good to see him have fun! It totally wore him out for several days, but he says it was well worth it. Unfortunately, he started back on the blood thinner Wednesday so play time is over.
Last weekend we enjoyed more fun with family in town. We were so excited to get tickets to the Friday night Ranger game (yippee for $10 ticket nights...complete with fireworks!) but with all the rain we had, the game was delayed until 9:30 PM. We took advantage of the delay by inviting the family to our house for homemade ice cream and a hilarious time playing MadGab. We did go out to watch the game in it's entirity (until 1:30 AM) only to find they cancelled the fireworks, announcing it after the game was over!
Saturday, the guys golfed and the girls enjoyed spending the day with our sweet Mila and Ella while Stacee and Ryan both worked. Ron was able to sleep in a little and then meet up with the guys for lunch while I grocery shopped and caught up on some household items before all joining up for dinner and an evening visit with Mom and Dad Nordell.
It's always good to have the family around, something we've too often taken for granted over the years. We are incredibly blessed to have such supportive, encouraging family members and the opportunity to see the majority of them throughout the last month has indeed been a treat.
Alot of information to take in. Ron was disappointed they didn't find something that they could "fix". Please continue to pray for wise discernment as to treatment; as well as complete healing, along with patience and hope as we wait!
Much love, Christie
"He is a wise man who does not grieve for the things which he has not but rejoices for those which he has." Epictetus
"Godliness with contentment is great gain." I Timothy 6:6
"But I trust in Your unfailing love; my heart rejoices in Your salvation. I will sing to the Lord, for He has been good to me." Psalm 13:5-6
Friday, July 2, 2010
Starting July off with a B*A*N*G!
I can't believe it's already July...summer seems to be quickly slipping away.
Tummy time! Mila, left; Ella, right
We've stayed busy with weekly trips to Dallas for various appointments/procedures but have also enjoyed time spent with our sweet girls as we help out so Stacee can work some; definitely the highlight of each week! They are at such a fun age...smiling, rolling over, "talking" and really becoming interactive with people and their environment; as well as "blowing bubbles" and drooling like crazy!
Little Miss Sunshine, Mila!
They typically sleep 10 hours a night and still need to be fed every 3+ hours during the day; then play some and then nap about 45 mins between each feed. They are doing fabulous, especially considering their adjusted age! At their last appt they weighed in at: Mila 12 lbs, and Ella 12 lb 3 oz. and are 23 1/2 inches and 24 inches. Stacee and Ryan are doing a great job with them; they are healthy, happy, easy, babies.
Ella ready to hit the pool!
We've been blessed in so many ways the last few weeks. Several people randomly sent us financial gifts at a most difficult time; allowing us to not only pay off the new a/c compressor, but also put a little back into our savings. Why does it always amaze us to experience God's faithful provision? He promises to "supply all [our] needs according to His riches in Christ Jesus"; why do we struggle to trust Him in this? Forgive us, Father, help us in our unbelief.
Even more amazing to us, is that people would take it upon themselves to step out and bless us monetarily, as well as through acts of services. A special thanks to each of you for your generosity and a shout out to a special someone who gave of his vacation time to do some much-needed tree trimming for us. You're a blessing, brother!
On to Ron:
Between regulating the blood thinner therapy, implementing a low potassium diet (which has successfully gotten potassium level back within normal range) and tweaking meds to see if we can get increased yakking under control, Ron's not felt real terrific. Poor guy, the new med he was switched to made him even more sick for about 4 days until it was discontinued.
Dr A decided it was time do an Upper GI to take a new look at things, so Thursday morning we battled the traffic to be at Presby by 8AM, ugh! The results show definite reflux with significant esophagitis (inflammation of the esophagus)-nothing new there; but with as much medication as he's on, the hope is it would be better controlled. Unfortunately, all the yakking he does exacerbates this chronic condition.
The results also show the valve between the stomach and small intestine seems thicker than expected but looks to be functioning properly. Thankfully, there is no evidence of blockage or narrowing. Dr. A wants him to have an EGD-- Esophagogastroduodenoscopy (scope of esophagus, stomach, duodenum) to evaluate these abnormalities; as well as a colonoscopy--yeah, we've reached that age! Fortunately, they are able to do them together, so he's scheduled for Tuesday, July 6, at Presbyterian.
Ron must be off the Lovenox (blood thinner) for a few days before these are performed, which actually works out to his benefit. For the 4th we are going to the lake and since he'll be off the Lovenox, he has been approved to ride the jet ski...as long as he doesn't do anything crazy...basically only allowed to cruise around the lake, but he's super-excited about this opportunity at normalcy!
Please pray as Ron has these procedures done next week. It would be so good to find something definitive that could be "fixed"; this daily yakking is not only frustrating for him and extremely wearing on him, but also has some potentially nasty long term effects.
As you celebrate the freedoms our country enjoys, I challenge you to be especially mindful of the freedom we have at Christ's expense.
"If the Son has set you free, you are free indeed" John 8:36
Much love,
Christie
Notes from random devotional readings:
"For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness, I will create rivers in the dry wasteland."
Isaiah 43:19 NLT
"For the Lord your God is living among you. He is a mighty Savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs."
Zephaniah 3:17 NLT
God gets the most glory in the life surrendered to Him, though it's hard for a self-sufficient person to submit. He does the most work in our helplessness.
Father, help me to see my weaknesses as a place where You can demonstrate your strength. God, I'm asking you to do something new and miraculous!
"But He said to me, "My grace is sufficient for you"
2 Cor 12:9
Trusting God to do something new and miraculous! I know He is faithful and always provides everything we need...not necessarily in the way we would hope, yet better than what we could imagine!
Mila, pink; Ella, red
Tummy time! Mila, left; Ella, right
We've stayed busy with weekly trips to Dallas for various appointments/procedures but have also enjoyed time spent with our sweet girls as we help out so Stacee can work some; definitely the highlight of each week! They are at such a fun age...smiling, rolling over, "talking" and really becoming interactive with people and their environment; as well as "blowing bubbles" and drooling like crazy!
Little Miss Sunshine, Mila!
They typically sleep 10 hours a night and still need to be fed every 3+ hours during the day; then play some and then nap about 45 mins between each feed. They are doing fabulous, especially considering their adjusted age! At their last appt they weighed in at: Mila 12 lbs, and Ella 12 lb 3 oz. and are 23 1/2 inches and 24 inches. Stacee and Ryan are doing a great job with them; they are healthy, happy, easy, babies.
Ella ready to hit the pool!
We've been blessed in so many ways the last few weeks. Several people randomly sent us financial gifts at a most difficult time; allowing us to not only pay off the new a/c compressor, but also put a little back into our savings. Why does it always amaze us to experience God's faithful provision? He promises to "supply all [our] needs according to His riches in Christ Jesus"; why do we struggle to trust Him in this? Forgive us, Father, help us in our unbelief.
Even more amazing to us, is that people would take it upon themselves to step out and bless us monetarily, as well as through acts of services. A special thanks to each of you for your generosity and a shout out to a special someone who gave of his vacation time to do some much-needed tree trimming for us. You're a blessing, brother!
On to Ron:
Between regulating the blood thinner therapy, implementing a low potassium diet (which has successfully gotten potassium level back within normal range) and tweaking meds to see if we can get increased yakking under control, Ron's not felt real terrific. Poor guy, the new med he was switched to made him even more sick for about 4 days until it was discontinued.
Dr A decided it was time do an Upper GI to take a new look at things, so Thursday morning we battled the traffic to be at Presby by 8AM, ugh! The results show definite reflux with significant esophagitis (inflammation of the esophagus)-nothing new there; but with as much medication as he's on, the hope is it would be better controlled. Unfortunately, all the yakking he does exacerbates this chronic condition.
The results also show the valve between the stomach and small intestine seems thicker than expected but looks to be functioning properly. Thankfully, there is no evidence of blockage or narrowing. Dr. A wants him to have an EGD-- Esophagogastroduodenoscopy (scope of esophagus, stomach, duodenum) to evaluate these abnormalities; as well as a colonoscopy--yeah, we've reached that age! Fortunately, they are able to do them together, so he's scheduled for Tuesday, July 6, at Presbyterian.
Ron must be off the Lovenox (blood thinner) for a few days before these are performed, which actually works out to his benefit. For the 4th we are going to the lake and since he'll be off the Lovenox, he has been approved to ride the jet ski...as long as he doesn't do anything crazy...basically only allowed to cruise around the lake, but he's super-excited about this opportunity at normalcy!
Please pray as Ron has these procedures done next week. It would be so good to find something definitive that could be "fixed"; this daily yakking is not only frustrating for him and extremely wearing on him, but also has some potentially nasty long term effects.
As you celebrate the freedoms our country enjoys, I challenge you to be especially mindful of the freedom we have at Christ's expense.
"If the Son has set you free, you are free indeed" John 8:36
Much love,
Christie
Notes from random devotional readings:
"For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness, I will create rivers in the dry wasteland."
Isaiah 43:19 NLT
"For the Lord your God is living among you. He is a mighty Savior. He will take delight in you with gladness. With His love, He will calm all your fears. He will rejoice over you with joyful songs."
Zephaniah 3:17 NLT
God gets the most glory in the life surrendered to Him, though it's hard for a self-sufficient person to submit. He does the most work in our helplessness.
Father, help me to see my weaknesses as a place where You can demonstrate your strength. God, I'm asking you to do something new and miraculous!
"But He said to me, "My grace is sufficient for you"
2 Cor 12:9
Trusting God to do something new and miraculous! I know He is faithful and always provides everything we need...not necessarily in the way we would hope, yet better than what we could imagine!
Mila, pink; Ella, red
Sunday, June 20, 2010
We Will Remember
Each year, as Father's Day draws near, I find myself reliving both the pain and the joy brought about 9 years ago. Though we found ourselves in the midst of every parent's worst nightmare; we also found ourselves experiencing God's love and faithfulness, His mercy and grace in a way we would have never known had this circumstance not taken place.
Sometimes I think others believe I live too much in the past. I confess, I often find myself thinking about "momentous events" that have taken place in years gone by. And there are particular days that especially cause my heart and mind to reminisce. However, I don't think this is unhealthy.
God reminds us in Deuteronomy 4: 9 NLT
"Watch out! Be very careful never to forget what you have seen the Lord do for you. Do not let these things escape from your mind as long as you live! And be sure to pass them on to your children and grandchildren."
We are called not only to remember all that He has done but to faithfully pass on from one generation to the next a lifelong reverence for God and His sovereignty. My prayer is that as I look back, I will be reminded of all that God has done in our lives; and remember that He can be trusted for today...as well as for our future. Just as He showed Himself more than sufficient in the past, He will do it again!
"Our children will hear about the wonders of the Lord. His righteous acts will be told to
those yet unborn. They will hear about everything He has done" Psalm 22:30-31 NLT
"O my people, listen to my teaching. Open your ears to what I am saying...I will teach you hidden lessons from our past - stories we have heard and know, stories our ancestors handed down to us. We will not hide these truths from our children but will tell the next generation about the glorious deeds of the Lord. We will tell of His power and the mighty miracles He did....He commanded our ancestors to teach them to their children, so the next generation might know them -- even the children not yet born -- that they in turn might teach their children. So each generation can set its hope anew on God, remembering His glorious miracles and obeying His commands."
Psalm 78: 1-7 NLT
This Father's Day, as I find myself once again remembering the many miracles God has worked in and through not just Aaron, but the entire situation; I also find myself grieving for the family of EF. Our prayer throughout this tragic ordeal was that God would receive glory in and through everyone involved. EF pled guilty to Driving Under the Influence and Assault with a Deadly Weapon. He accepted a plea bargain of 6 years in prison with the possibility of parole after 3 (for good behavior). It has now been 8 years, and EF is still incarcerated. We receive word from the Parole Board every 6 months when he is up for review, and each time he has been denied. It grieves my heart that instead of allowing himself to be drawn to Christ, it seems EF has taken a different path.
Please join us in praying for EF and his family. We can't imagine the pain they must feel as each new holiday passes. We still believe God can work a miracle here, if given the chance.
Also, join us in praising God for His infinite grace...not only is our sweet Aaron alive, but a testimony to God's miraculous healing power!
(By the way, If you have no idea what I am talking about, e-mail me and I'll share Aaron's story with you)
This song has been playing in my head all week and seems to speak our thoughts perfectly!
We Will Remember
Tommy Walker
http://www.youtube.com/watch?v=JoqV2ucPsaI
We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness
You’re our creator, our life sustainer
Deliverer, our comfort, our joy
Throughout the ages You’ve been our shelter
Our peace in the midst of the storm
With signs and wonders You’ve shown Your power
With precious blood You showed us Your grace
You’ve been our helper, our liberator
The giver of life with no end
We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness
When we walk through life’s darkest valleys
We will look back at all You have done
And we will shout, our God is good
And He is the faithful One
Bridge
Hallelujah, hallelujah
To the one from whom all blessings flow
Hallelujah, hallelujah
To the one whose glory has been shown
We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness
I still remember the day You saved me
The day I heard You call out my name
You said You loved me and would never leave me
And I’ve never been the same
We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness
Sometimes I think others believe I live too much in the past. I confess, I often find myself thinking about "momentous events" that have taken place in years gone by. And there are particular days that especially cause my heart and mind to reminisce. However, I don't think this is unhealthy.
God reminds us in Deuteronomy 4: 9 NLT
"Watch out! Be very careful never to forget what you have seen the Lord do for you. Do not let these things escape from your mind as long as you live! And be sure to pass them on to your children and grandchildren."
We are called not only to remember all that He has done but to faithfully pass on from one generation to the next a lifelong reverence for God and His sovereignty. My prayer is that as I look back, I will be reminded of all that God has done in our lives; and remember that He can be trusted for today...as well as for our future. Just as He showed Himself more than sufficient in the past, He will do it again!
"Our children will hear about the wonders of the Lord. His righteous acts will be told to
those yet unborn. They will hear about everything He has done" Psalm 22:30-31 NLT
"O my people, listen to my teaching. Open your ears to what I am saying...I will teach you hidden lessons from our past - stories we have heard and know, stories our ancestors handed down to us. We will not hide these truths from our children but will tell the next generation about the glorious deeds of the Lord. We will tell of His power and the mighty miracles He did....He commanded our ancestors to teach them to their children, so the next generation might know them -- even the children not yet born -- that they in turn might teach their children. So each generation can set its hope anew on God, remembering His glorious miracles and obeying His commands."
Psalm 78: 1-7 NLT
This Father's Day, as I find myself once again remembering the many miracles God has worked in and through not just Aaron, but the entire situation; I also find myself grieving for the family of EF. Our prayer throughout this tragic ordeal was that God would receive glory in and through everyone involved. EF pled guilty to Driving Under the Influence and Assault with a Deadly Weapon. He accepted a plea bargain of 6 years in prison with the possibility of parole after 3 (for good behavior). It has now been 8 years, and EF is still incarcerated. We receive word from the Parole Board every 6 months when he is up for review, and each time he has been denied. It grieves my heart that instead of allowing himself to be drawn to Christ, it seems EF has taken a different path.
Please join us in praying for EF and his family. We can't imagine the pain they must feel as each new holiday passes. We still believe God can work a miracle here, if given the chance.
Also, join us in praising God for His infinite grace...not only is our sweet Aaron alive, but a testimony to God's miraculous healing power!
(By the way, If you have no idea what I am talking about, e-mail me and I'll share Aaron's story with you)
This song has been playing in my head all week and seems to speak our thoughts perfectly!
We Will Remember
Tommy Walker
http://www.youtube.com/watch?v=JoqV2ucPsaI
We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness
You’re our creator, our life sustainer
Deliverer, our comfort, our joy
Throughout the ages You’ve been our shelter
Our peace in the midst of the storm
With signs and wonders You’ve shown Your power
With precious blood You showed us Your grace
You’ve been our helper, our liberator
The giver of life with no end
We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness
When we walk through life’s darkest valleys
We will look back at all You have done
And we will shout, our God is good
And He is the faithful One
Bridge
Hallelujah, hallelujah
To the one from whom all blessings flow
Hallelujah, hallelujah
To the one whose glory has been shown
We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness
I still remember the day You saved me
The day I heard You call out my name
You said You loved me and would never leave me
And I’ve never been the same
We will remember, we will remember
We will remember the works of Your hands
We will stop and give you praise
For great is Thy faithfulness
Saturday, June 12, 2010
When Everything Falls Apart
Sorry I'm just now getting around to updating; I've had a sinus infection that kept me down the first part of the week and have been playing catch up ever since.
Ron's appointment with the hematologist/oncologist brought no surprises. Dr. M started him on daily Lovenox (anticoagulant/blood thinner) through his PICC line. It's a little scary since no one (at least they know of) has ever had Lovenox administered this way; so he's starting on a very low dose and has had two blood draws already this week to establish a baseline and to monitor specific (antifactor 10a) level. Because the doctor is also an oncologist they have their own pharmacy, lab, infusion clinic (for chemo) and yet, they've never had this scenario. My sweet husband, always the guinea pig. It's a challenge to be learning these things along with the specialist doctor. The pharmacist even had to research the best way to administer the Lovenox and teach me how to do it.
The major concern is bleeding. The two times they tried Ron on Lovenox (when they had to be injected into his belly), he always had bleeds (hematomas). In these cases, they were visible. Now that the Lovenox is administered through his PICC there are no obvious sites to watch; which means if he were to have bleeding, it would be internally. We're hoping that the previous bleeds, when receiving the injections, were due to the multiple sticks under the skin not because of the Lovenox in and of itself.
The Lovenox therapy is a preventative measure to guard against future blood clots. This does not bust up the existing blood clots; they should resolve over time (usually +/-6 months). When asked why he develops blood clots we were told once you have a blood clot; for some reason, your body tends to develop more.
Dr M also said he doesn't believe that the blood clots are what's causing the edema, but are just a small part of the puzzle.
We're still adjusting to the low potassium diet thing; which has been difficult, mainly because I haven't felt well so haven't taken the time to sit down and figure out recipes to go with these new restrictions therefore, I haven't been cooking much. My major project for this week is to come up with a plan of action. Not that he eats that much, but the things he typically did eat, are (mostly) no longer an option. No big deal, just a matter of adjustment.
So, there ya have it...our week in a nutshell!
Christie
"Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33 New Living Translation
"Be strong and courageous. Do not be afraid or terrified...for the LORD your God goes with you; He will never leave you nor forsake you." Deuteronomy 31:6
Great song below
Everything Falls by Fee
http://www.youtube.com/watch?v=ZvjJ9TYA8cE&feature=related
You said You'd never leave or forsake me
When You said, this life is gonna shake me
And You said the world is gonna bring trouble on my soul
This I know
When everything falls apart your arms hold me together
When everything falls apart you're the only hope for this heart
When everything falls apart and my strength is gone
I find you mighty and strong, You keep holding on
You keep holding on
When I see the darkness all around me
When I see that tragedy has found me
I still believe your faithful arms will never let me go
And still I know
When everything falls apart your arms hold me together
When everything falls apart you're the only hope for this heart
When everything falls apart and my strength is gone
I find you mighty and strong, You keep holding on
You keep holding on
Sorrow will last for the night
But hope is rising with the sun, it's rising with the sun
There will be storms in this life
But I know You will overcome, you have overcome
When everything falls apart your arms hold me together
When everything falls apart you're the only hope for this heart
When everything falls apart and my strength is gone
I find you mighty and strong, You keep holding on
You keep holding on
Ron's appointment with the hematologist/oncologist brought no surprises. Dr. M started him on daily Lovenox (anticoagulant/blood thinner) through his PICC line. It's a little scary since no one (at least they know of) has ever had Lovenox administered this way; so he's starting on a very low dose and has had two blood draws already this week to establish a baseline and to monitor specific (antifactor 10a) level. Because the doctor is also an oncologist they have their own pharmacy, lab, infusion clinic (for chemo) and yet, they've never had this scenario. My sweet husband, always the guinea pig. It's a challenge to be learning these things along with the specialist doctor. The pharmacist even had to research the best way to administer the Lovenox and teach me how to do it.
The major concern is bleeding. The two times they tried Ron on Lovenox (when they had to be injected into his belly), he always had bleeds (hematomas). In these cases, they were visible. Now that the Lovenox is administered through his PICC there are no obvious sites to watch; which means if he were to have bleeding, it would be internally. We're hoping that the previous bleeds, when receiving the injections, were due to the multiple sticks under the skin not because of the Lovenox in and of itself.
The Lovenox therapy is a preventative measure to guard against future blood clots. This does not bust up the existing blood clots; they should resolve over time (usually +/-6 months). When asked why he develops blood clots we were told once you have a blood clot; for some reason, your body tends to develop more.
Dr M also said he doesn't believe that the blood clots are what's causing the edema, but are just a small part of the puzzle.
We're still adjusting to the low potassium diet thing; which has been difficult, mainly because I haven't felt well so haven't taken the time to sit down and figure out recipes to go with these new restrictions therefore, I haven't been cooking much. My major project for this week is to come up with a plan of action. Not that he eats that much, but the things he typically did eat, are (mostly) no longer an option. No big deal, just a matter of adjustment.
So, there ya have it...our week in a nutshell!
Christie
"Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33 New Living Translation
"Be strong and courageous. Do not be afraid or terrified...for the LORD your God goes with you; He will never leave you nor forsake you." Deuteronomy 31:6
Great song below
Everything Falls by Fee
http://www.youtube.com/watch?v=ZvjJ9TYA8cE&feature=related
You said You'd never leave or forsake me
When You said, this life is gonna shake me
And You said the world is gonna bring trouble on my soul
This I know
When everything falls apart your arms hold me together
When everything falls apart you're the only hope for this heart
When everything falls apart and my strength is gone
I find you mighty and strong, You keep holding on
You keep holding on
When I see the darkness all around me
When I see that tragedy has found me
I still believe your faithful arms will never let me go
And still I know
When everything falls apart your arms hold me together
When everything falls apart you're the only hope for this heart
When everything falls apart and my strength is gone
I find you mighty and strong, You keep holding on
You keep holding on
Sorrow will last for the night
But hope is rising with the sun, it's rising with the sun
There will be storms in this life
But I know You will overcome, you have overcome
When everything falls apart your arms hold me together
When everything falls apart you're the only hope for this heart
When everything falls apart and my strength is gone
I find you mighty and strong, You keep holding on
You keep holding on
Monday, June 7, 2010
Helpless
I've put off writing this update because...well, because truth be told, I'm prideful. And I'm tired of feeling so needy. And I'm weary of this messy season of life we're in.
Yes, I confess, I'm in bondage to PRIDE. I prefer to see myself as a confident, independent woman who can handle life on my own, thank you very much. I can paste a smile on my face with the best of them, and say the right words "I'm good, how are you?"...for a while; then the tiniest of cracks causes the facade to completely crumble.
Now, there's nothing wrong with confidence and independence, but, honestly, there's denial involved in thinking I can do it all on my own.
Rick Warren in The Purpose Driven Life states "I need you, you need me; we need each other". I totally agree with him; but you see, I never thought we'd be dealing with a life-long illness. It's not so bad to have to accept help for a short amount of time, but incredibly humbling when it's long term. Reality is, WE CAN'T do this without you--your financial assistance, your physical help, your emotional support and especially, your spiritual encouragement through prayer.
I KNOW God has called us to be transparent; to share the good and bad, highs and lows of life with you; to publicly put feet to our faith. But, oh, it's hard when it seems to be unending lows. It's hard to think that people open their e-mail and think, good grief...it's Christie again spouting her gloom and doom. However, when we keep what's going on to ourselves, you don't know how to pray for us. So, as I set aside my pride, and let you in on what's going on; I do so with a humble heart.
Ron had abdominal ultrasound and Doppler of lower extremities about 10 days ago. And yes, they found blood clots; some old (and bigger) and some new. We meet with the hematologist/oncologist this Tuesday to come up with a game plan. We know it will involve blood thinners but not sure how it will be administered. Lovenox injections are not an option - he tends to develop hematomas. Oral blood thinners are not an option - due to his digestive issues including the tethering of bowel, his body would not assimilate this medication in a manner that would be safe or beneficial. Heparin injections into his PICC caused potassium and glucose issues (which was a contributor to his episode of unconsciousness Thanksgiving), so that is not an option, either.
I'd be lying to say this doesn't make us anxious. And yes, we know we're to be anxious for nothing and, yes, we know we're not to worry about tomorrow, but we're having a hard time fleshing this out at the moment. No, we're not losing our faith; though some days are harder than others; we know God has a plan...we may not like it or understand it, we may feel battered and bruised but we KNOW our circumstances don't change who God is!
"I will never forget this awful time,
as I grieve over my loss.
Yet I still dare to hope
when I remember this:
The faithful love of the Lord never ends!
His mercies never cease.
Great is His faithfulness;
His mercies begin afresh each morning.
I say to myself, “The Lord is my inheritance;
therefore, I will hope in Him!”
Lamentations 3:20-24 New Living Translation
I had also mentioned in our last update Ron's issues with his blood work over the last couple of months. This is an ongoing problem with last week requiring blood draws on two different days (requiring multiple sticks since PICC wouldn't draw and they had a hard time getting a usable vein); due to high potassium and chloride numbers. Usually TPN can be tweaked to help with little issues that crop up, problem is...he's not receiving any potassium in his TPN so now we're dealing with figuring out how to modify his diet to hopefully bring these numbers down. How do you modify a diet, when the guy hardly eats anything as it is?
Potassium is an electrolyte. Elevated potassium can cause a multitude of issues including arrhythmia, dehydration, muscle weakness, lethargy. You can have elevated potassium if your kidneys (or in Ron's case, kidney) are not filtering properly. And in Ron's case, it's hard to distinguish symptoms since he daily deals with muscle weakness and lethargy and is always in a delicate state of hydration. So far, he has not exhibited any symptoms related to the heart.
As we've tried to adjust his diet, we've found just about everything he exists on is on the high potassium list: protein drinks, Gatorade, instant breakfast, peanut butter, milk. And it seems ironic that all the stuff that's "good" for you...whole grains, fresh veggies and fruits, even fish!...are all things that are high in potassium. UGH!
I'm so very thankful it's summer time so I'm able to be home to deal with these issues. Not exactly how I had hoped to spend my time off, but you do what you have to do, right?
On top of Ron's issues, I've been fighting some kind of a bug with stomach issues, horrendous headache and body aches for the last couple of days but am so glad we went to church anyways this morning. Our associate pastor's sermon "Amazing Grace: My Chains are Gone" really spoke to me about living in bondage..my bondage happens to be to pride...imagine that! And this bondage keeps me from experiencing all that God has for me. We also sang a new worship song, Helpless (lyrics below) that was very appropriate for what we've been going through lately. Thanks, Danny and Wayne.
And I must say, God continues to amaze us. We struggle to live from paycheck to paycheck each month without having ANY room in our budget for unexpected expenses, along with our savings dwindling oh so quickly. We've been fretting over how in the world we're going to pay off Ron's hospital bills and now $1300 for the compressor it took to repair our air conditioner. What a surprise to receive a very unexpected anniversary gift from a couple who on more than one occasion felt impressed to send us a monetary gift (without knowing the financial struggles we were facing at the moment!) Thanks so much for your obedience to bless us in this way! Your faithfulness will help pay for our brand spankin' new compressor!! Oh, how I love a fully functioning air conditioner in the Texas heat!
This is probably filled with alot of rambling but as I've always said, this is more for my benefit than yours! Writing out my thoughts and feelings are my much-needed therapy!
Know that although we've been going through a rough patch; we choose to find joy in life: our nightly board game after dinner, a peaceful summer evening watching the sunset at the lake, the sweet coos and smiles from our precious grandbabies, evening bike rides, time with family just hanging out...we are blessed in so many ways; and never take that for granted.
I'll try to update again after we meet with hematologist/oncologist Tuesday. Please pray for definitive answers to our questions about anti-coagulation (blood thinning) therapy. And pray for us, as we seek to honor God as we walk this path He has laid out for us.
Much love, Christie
Wish I had an audio to go with this but...hope this speaks to your heart as it did mine.
Helpless
I wasn't created to live this life alone;
Made for Your glory, I am not my own.
Lord, Your strength is made perfect in me,
So I'll boast in the weakness I see.
I am helpless, helpless,
And my heart is crying out for You.
Jesus, without Your presence,
There is nothing I can do;
I'm helpless without You.
Lord, in myself I am not enough.
I need Your Spirit; fill me with Your love.
All I am and all that I do
Means nothing at all without You.
I am helpless, helpless,
And my heart is crying out for You.
Jesus, without Your presence,
There is nothing I can do;
I'm helpless without You.
Yes, I confess, I'm in bondage to PRIDE. I prefer to see myself as a confident, independent woman who can handle life on my own, thank you very much. I can paste a smile on my face with the best of them, and say the right words "I'm good, how are you?"...for a while; then the tiniest of cracks causes the facade to completely crumble.
Now, there's nothing wrong with confidence and independence, but, honestly, there's denial involved in thinking I can do it all on my own.
Rick Warren in The Purpose Driven Life states "I need you, you need me; we need each other". I totally agree with him; but you see, I never thought we'd be dealing with a life-long illness. It's not so bad to have to accept help for a short amount of time, but incredibly humbling when it's long term. Reality is, WE CAN'T do this without you--your financial assistance, your physical help, your emotional support and especially, your spiritual encouragement through prayer.
I KNOW God has called us to be transparent; to share the good and bad, highs and lows of life with you; to publicly put feet to our faith. But, oh, it's hard when it seems to be unending lows. It's hard to think that people open their e-mail and think, good grief...it's Christie again spouting her gloom and doom. However, when we keep what's going on to ourselves, you don't know how to pray for us. So, as I set aside my pride, and let you in on what's going on; I do so with a humble heart.
Ron had abdominal ultrasound and Doppler of lower extremities about 10 days ago. And yes, they found blood clots; some old (and bigger) and some new. We meet with the hematologist/oncologist this Tuesday to come up with a game plan. We know it will involve blood thinners but not sure how it will be administered. Lovenox injections are not an option - he tends to develop hematomas. Oral blood thinners are not an option - due to his digestive issues including the tethering of bowel, his body would not assimilate this medication in a manner that would be safe or beneficial. Heparin injections into his PICC caused potassium and glucose issues (which was a contributor to his episode of unconsciousness Thanksgiving), so that is not an option, either.
I'd be lying to say this doesn't make us anxious. And yes, we know we're to be anxious for nothing and, yes, we know we're not to worry about tomorrow, but we're having a hard time fleshing this out at the moment. No, we're not losing our faith; though some days are harder than others; we know God has a plan...we may not like it or understand it, we may feel battered and bruised but we KNOW our circumstances don't change who God is!
"I will never forget this awful time,
as I grieve over my loss.
Yet I still dare to hope
when I remember this:
The faithful love of the Lord never ends!
His mercies never cease.
Great is His faithfulness;
His mercies begin afresh each morning.
I say to myself, “The Lord is my inheritance;
therefore, I will hope in Him!”
Lamentations 3:20-24 New Living Translation
I had also mentioned in our last update Ron's issues with his blood work over the last couple of months. This is an ongoing problem with last week requiring blood draws on two different days (requiring multiple sticks since PICC wouldn't draw and they had a hard time getting a usable vein); due to high potassium and chloride numbers. Usually TPN can be tweaked to help with little issues that crop up, problem is...he's not receiving any potassium in his TPN so now we're dealing with figuring out how to modify his diet to hopefully bring these numbers down. How do you modify a diet, when the guy hardly eats anything as it is?
Potassium is an electrolyte. Elevated potassium can cause a multitude of issues including arrhythmia, dehydration, muscle weakness, lethargy. You can have elevated potassium if your kidneys (or in Ron's case, kidney) are not filtering properly. And in Ron's case, it's hard to distinguish symptoms since he daily deals with muscle weakness and lethargy and is always in a delicate state of hydration. So far, he has not exhibited any symptoms related to the heart.
As we've tried to adjust his diet, we've found just about everything he exists on is on the high potassium list: protein drinks, Gatorade, instant breakfast, peanut butter, milk. And it seems ironic that all the stuff that's "good" for you...whole grains, fresh veggies and fruits, even fish!...are all things that are high in potassium. UGH!
I'm so very thankful it's summer time so I'm able to be home to deal with these issues. Not exactly how I had hoped to spend my time off, but you do what you have to do, right?
On top of Ron's issues, I've been fighting some kind of a bug with stomach issues, horrendous headache and body aches for the last couple of days but am so glad we went to church anyways this morning. Our associate pastor's sermon "Amazing Grace: My Chains are Gone" really spoke to me about living in bondage..my bondage happens to be to pride...imagine that! And this bondage keeps me from experiencing all that God has for me. We also sang a new worship song, Helpless (lyrics below) that was very appropriate for what we've been going through lately. Thanks, Danny and Wayne.
And I must say, God continues to amaze us. We struggle to live from paycheck to paycheck each month without having ANY room in our budget for unexpected expenses, along with our savings dwindling oh so quickly. We've been fretting over how in the world we're going to pay off Ron's hospital bills and now $1300 for the compressor it took to repair our air conditioner. What a surprise to receive a very unexpected anniversary gift from a couple who on more than one occasion felt impressed to send us a monetary gift (without knowing the financial struggles we were facing at the moment!) Thanks so much for your obedience to bless us in this way! Your faithfulness will help pay for our brand spankin' new compressor!! Oh, how I love a fully functioning air conditioner in the Texas heat!
This is probably filled with alot of rambling but as I've always said, this is more for my benefit than yours! Writing out my thoughts and feelings are my much-needed therapy!
Know that although we've been going through a rough patch; we choose to find joy in life: our nightly board game after dinner, a peaceful summer evening watching the sunset at the lake, the sweet coos and smiles from our precious grandbabies, evening bike rides, time with family just hanging out...we are blessed in so many ways; and never take that for granted.
I'll try to update again after we meet with hematologist/oncologist Tuesday. Please pray for definitive answers to our questions about anti-coagulation (blood thinning) therapy. And pray for us, as we seek to honor God as we walk this path He has laid out for us.
Much love, Christie
Wish I had an audio to go with this but...hope this speaks to your heart as it did mine.
Helpless
I wasn't created to live this life alone;
Made for Your glory, I am not my own.
Lord, Your strength is made perfect in me,
So I'll boast in the weakness I see.
I am helpless, helpless,
And my heart is crying out for You.
Jesus, without Your presence,
There is nothing I can do;
I'm helpless without You.
Lord, in myself I am not enough.
I need Your Spirit; fill me with Your love.
All I am and all that I do
Means nothing at all without You.
I am helpless, helpless,
And my heart is crying out for You.
Jesus, without Your presence,
There is nothing I can do;
I'm helpless without You.
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