Good news!!! December 4, Ron passed the 1 year mark...1 year since he has had an inpatient hospital stay! Heartfelt thanks go to Dr. A's wonderful care as he worked with us in so many ways to make this possible. Yes, he has had multiple outpatient procedures and has many ongoing issues, but no inpatient stays~Hallelujah!
God continues to stretch us and grow us in so many ways. Asking us to trust Him even when (or maybe especially when) He calls us to step out of our comfort zone.
So what's been going on? Ron's dehydration has gotten much better and he's been off of the IV boluses for 10 days now. He has not had the dizzy, light-headed feeling for about a week. Being off of his newest medication has helped in this regard, however, he has been much more tired, a little more quiet/introspective and sleeping quite a bit; some of the reasons he had been started on that medication to begin with. Unfortunately, his kidney function has ooched up again this week so they are working on tweaking the different levels of chloride, etc in his TPN to see if they can get things back in balance. He will continue to have labs drawn weekly to keep a close eye on things. Being on long-term TPN is always a delicate balancing act.
He continues to yak pretty much daily and often twice a day. Plans are in the works to have a motility study done, hopefully before the end of the year but they aren't sure if they want to do anything new until they can get his kidney function in a more "normal" range. The push to get this procedure done before the end of the year is because as of December 31; Presbyterian; or any other hospital within the Texas Health Resources network which includes all of Presbyterian hospitals, all Harris hospitals, as well as Arlington Memorial, and each of their outpatient and short stay facilities; will no longer be providers on our insurance . Evidently THR is in negotiations, but so far has not reached an agreement with, Blue Cross Blue Shield.
This is on top of the fact that as of November, our fabulous Dr. A is no longer a provider for Blue Cross Blue Shield either. In fact, all of Digestive Health Associates of Texas (DHAT)--which is each and every one of the gastroenterologists that has treated Ron in the last 3 years at both Presby and Harris HEB--are no longer accepted providers for BCBS. Contract negotiations are ongoing between DHAT and BCBS and have been since the beginning of summer. We have been told they do not foresee a solution for the next 6-9 months.
We've been told we are free to continue to use these doctors/facilities, however, we will have to pay at a much higher out-of-network level (along with meeting all deductibles up front).
Please be in prayer regarding this issue. Dr. A has been a lifesaver in that he has continued to provide treatment for Ron and it has all been through e-mail, text and phone calls, therefore avoiding payment of ANY sort. He is so incredibly diligent in his care of Ron; having done much research and talking with many colleagues across the country on Ron's unusual case . He has always made us feel as if Ron is his only patient; willing to take our calls, texts, etc. any time, day or night, including weekends...whether or not he was the doctor on call. God has certainly blessed.
The really sticky part comes when Ron needs to have a procedure done, like now. How do we know what to do? Is God calling us to seek out a new doctor and new hospital? Or is he going to provide the added funding needed to pay for the higher out-of-network expenses and have us stay with those who are intimately familiar with him literally inside and out?
It's times like this that I really struggle with hearing God's call. If this is His call--to leave behind all that is familiar-- am I brave enough, faithful enough to go. Do I have the kind of obedience Abram had when God called him to leave his country, his relatives and his father's house and go to the land He would show him? God called him to go, and he went...without knowing where he was going! (Gen 12:1). Or am I being overly dramatic here? Typically, choosing a new doctor is not THAT big of a deal; not big enough to be compared with leaving your country and relatives! But, leave behind three years worth of intensive, ongoing care-giving???
Oh, Father; help us to be obedient to whatever Your call may be. May we have the courage to walk by faith, not by our limited sight. That we may respond as Abram did as written in Gen 12:4 "So Abram departed as the Lord had instructed him..."
We covet your prayers, faithful ones!
Christie
“Some things are so important to God that they are worth interrupting the happiness and health of His children in order to accomplish them.”
~ Charles Stanley
We must believe what Christ has in store for us is worth our present pain.
Sunday, December 5, 2010
Saturday, November 13, 2010
Aye yi yi....
....my unique guy!!!!!
We're spending another weekend pretty much home-bound. Ron again began experiencing symptoms of dehydration Wednesday. Despite another increase of fluid in TPN, his kidney function was back in the unacceptable zone; along with being dizzy/light headed. As of Friday, he was back on lactated ringers; which he had only been off of about 10 days. Yet we are so very thankful we are able to manage this at home. The IV is a bit of a nuisance since it must be infused as a gravity drip as opposed to going through a pump and being stored in a backpack like his TPN. And since he only has the single lumen PICC, this means he has his lovely IV pole to drag around with him for 4+ hours a day. Unfortunately, for now, he only has a small window of time each afternoon when he is not connected to either TPN or IV. Ella and Mila are fascinated with the wheels on the IV pole and Mila has especially become aware of the IV line coming out of Papa's arm. Neither of them have attempted to pull on it but are becoming curious about it.
In consultation with Dr. A, we've gone over and over what has changed in the last 6 weeks to cause this to repeatedly be happening. The only variable we can come up with is the introduction of a new medication around that time. This medication has never shown in clinical trials to act as a diuretic, but in Ron's case that seems to be what is taking place. It's causing his body to not hold on to the fluid it needs, leading him to become dehydrated. This medication was discontinued as of Thursday and he will have blood drawn again on Monday. Typically, the kidney function looks good while on the daily IV bolus; it's about a week later that the downward spiral begins.
Your prayers are coveted as we seek a resolution to this latest craziness!
Much love,
Christie
"As for me, I look to the Lord for His help. I wait confidently for God to save me, and my God will certainly hear me." Micah 7:7 NLT
We're spending another weekend pretty much home-bound. Ron again began experiencing symptoms of dehydration Wednesday. Despite another increase of fluid in TPN, his kidney function was back in the unacceptable zone; along with being dizzy/light headed. As of Friday, he was back on lactated ringers; which he had only been off of about 10 days. Yet we are so very thankful we are able to manage this at home. The IV is a bit of a nuisance since it must be infused as a gravity drip as opposed to going through a pump and being stored in a backpack like his TPN. And since he only has the single lumen PICC, this means he has his lovely IV pole to drag around with him for 4+ hours a day. Unfortunately, for now, he only has a small window of time each afternoon when he is not connected to either TPN or IV. Ella and Mila are fascinated with the wheels on the IV pole and Mila has especially become aware of the IV line coming out of Papa's arm. Neither of them have attempted to pull on it but are becoming curious about it.
In consultation with Dr. A, we've gone over and over what has changed in the last 6 weeks to cause this to repeatedly be happening. The only variable we can come up with is the introduction of a new medication around that time. This medication has never shown in clinical trials to act as a diuretic, but in Ron's case that seems to be what is taking place. It's causing his body to not hold on to the fluid it needs, leading him to become dehydrated. This medication was discontinued as of Thursday and he will have blood drawn again on Monday. Typically, the kidney function looks good while on the daily IV bolus; it's about a week later that the downward spiral begins.
Your prayers are coveted as we seek a resolution to this latest craziness!
Much love,
Christie
"As for me, I look to the Lord for His help. I wait confidently for God to save me, and my God will certainly hear me." Micah 7:7 NLT
Sunday, November 7, 2010
What a ride!
Oh My Word! These last few weeks have been crazy! I've wanted to send out an update but Ron's kept me so busy, I feel I'm meeting myself coming and going!
You all know about Ron's battle with dehydration the first to mid part of October. Well, two weeks later he started exhibiting symptoms again. This time the dehydration was worse and definitely affecting his kidney function, leaving us once again in the battle to keep him out of the hospital. Dr. A further increased the fluid level in his TPN and this time placed him on IV lactated ringers for 7 days.
Nurse Nordell prepping IV!
Poor guy, on top of feeling puny when he's dehydrated; he's also pretty much home-bound. We have to be more aware of his fluid intake and output, keep things fairly low key and he is not allowed to drive or leave the house alone (even for a walk).
Unfortunately, he got a little worse before he got better with a real scare Monday when his weekend labs came back much worse requiring STAT labs done Monday after work. Upon returning from the lab, I mowed the yard, repacked my hospital bag and took a shower anticipating a call telling us to head to Presby. Praise God, Dr. A's 7:30 PM call was to tell us the fluids had finally kicked in and his lab results were markedly better.
Though things were a little crazy, we were able to enjoy a fun weekend with out of town family. It was especially nice for Ron to have so many sporting events going on to keep him occupied and have his brothers here to share it with him since he really couldn't get out.
But what's really made it bearable, has been the time his sweet girls have come over to entertain him! Mila and Ella are almost 9 months old and growing like crazy!!! Ella is full out crawling and can get anywhere she wants in a hurry! Mila is scooching and is a champ at getting into a sitting position totally unassisted, and they are both pulling up on everything! They are SO MUCH FUN! And absolutely adorable, as well!
Big girls! E, left; M, right
M in walker, E crawling underneath
So cute it's scary! E, left; M, right
Mila unhappy about sharing HER Papa!
Good news throughout all of this is that when he went for his scheduled check up with his hematologist/oncologist; his coagulation level continues to remain stable. Thank you, Father!!!!
So there ya have it!
Christie
"My prayer is not that You take them out of the world but that You protect them from the evil one." John 17:15
You all know about Ron's battle with dehydration the first to mid part of October. Well, two weeks later he started exhibiting symptoms again. This time the dehydration was worse and definitely affecting his kidney function, leaving us once again in the battle to keep him out of the hospital. Dr. A further increased the fluid level in his TPN and this time placed him on IV lactated ringers for 7 days.
Nurse Nordell prepping IV!
Poor guy, on top of feeling puny when he's dehydrated; he's also pretty much home-bound. We have to be more aware of his fluid intake and output, keep things fairly low key and he is not allowed to drive or leave the house alone (even for a walk).
Unfortunately, he got a little worse before he got better with a real scare Monday when his weekend labs came back much worse requiring STAT labs done Monday after work. Upon returning from the lab, I mowed the yard, repacked my hospital bag and took a shower anticipating a call telling us to head to Presby. Praise God, Dr. A's 7:30 PM call was to tell us the fluids had finally kicked in and his lab results were markedly better.
Though things were a little crazy, we were able to enjoy a fun weekend with out of town family. It was especially nice for Ron to have so many sporting events going on to keep him occupied and have his brothers here to share it with him since he really couldn't get out.
But what's really made it bearable, has been the time his sweet girls have come over to entertain him! Mila and Ella are almost 9 months old and growing like crazy!!! Ella is full out crawling and can get anywhere she wants in a hurry! Mila is scooching and is a champ at getting into a sitting position totally unassisted, and they are both pulling up on everything! They are SO MUCH FUN! And absolutely adorable, as well!
Big girls! E, left; M, right
M in walker, E crawling underneath
So cute it's scary! E, left; M, right
Mila unhappy about sharing HER Papa!
Good news throughout all of this is that when he went for his scheduled check up with his hematologist/oncologist; his coagulation level continues to remain stable. Thank you, Father!!!!
So there ya have it!
Christie
"My prayer is not that You take them out of the world but that You protect them from the evil one." John 17:15
Thursday, November 4, 2010
Remembering - Pray FERVENTLY, Believing!
Sunday, November 4, 2007 is forever etched on our hearts. This was the title to our e-mail update sent out November 5. We've come a long way, yet still so far to go.
If you'd like to reflect on God's faithfulness with us, read the following link:
http://nordellnotes.blogspot.com/2007/11/pray-ferventlybelieving.html
And check out this great music video that really speaks to me (or if you'd rather, the words are below)
http://www.youtube.com/watch?v=mfWAG-bnttQ&feature=related
BEFORE THE MORNING LYRICS - JOSH WILSON
Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?
Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see
Chorus:
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming
so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good for those who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming
so hold on, you got to wait for the light
press on, just fight the good fight
because the pain that you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah
Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming
com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning
If you'd like to reflect on God's faithfulness with us, read the following link:
http://nordellnotes.blogspot.com/2007/11/pray-ferventlybelieving.html
And check out this great music video that really speaks to me (or if you'd rather, the words are below)
http://www.youtube.com/watch?v=mfWAG-bnttQ&feature=related
BEFORE THE MORNING LYRICS - JOSH WILSON
Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?
Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see
Chorus:
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming
so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good for those who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming
so hold on, you got to wait for the light
press on, just fight the good fight
because the pain that you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah
Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming
Would you dare, would you dare, to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming
com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning
Tuesday, October 12, 2010
We made it!
Thank you for your prayers; we made it through the weekend with no emergency trips to Presby!
Monday's labs show Ron is definitely dehydrated. Today, we had lactated ringers (IV solution that supplies water and electorlytes) and pole delivered to the house. I immediately received phone instructions on how to administer and we got him set up to run fluids through over a four hour period. We'lll do this each afternoon for the next three days. Praise God, he says he can already tell a little difference after just one liter.
Please pray for our sweet daughter-in-love, Stacee, and her family. Ryan, Stacee and the girls have been in Flordia for the last week visiting her mom, Diana, and step-dad, Jack. They were due to fly home this morning but late last night Jack began experiencing intense chest pain; long story short they found he had a torn aorta. They performed emergency surgery, however, he went into cardiac arrest and died this morning. This was very unexpected and, as you can imagine, has left everyone in shock.
I'm so thankful Stacee was there and had these last few days with Jack. Please pray especially for Stacee's mom, Jack's older daughter, as well as his grandchildren and great-grandchild. This is an especially hard blow in that Jack's son had died unexpectantly in a drowning accident about 6 weeks ago. Stacee's family is having a difficult time understanding why God would do something like this. And for Stacee as she continues to boldly share her comfort and peace in Christ during this difficult time.
Monday's labs show Ron is definitely dehydrated. Today, we had lactated ringers (IV solution that supplies water and electorlytes) and pole delivered to the house. I immediately received phone instructions on how to administer and we got him set up to run fluids through over a four hour period. We'lll do this each afternoon for the next three days. Praise God, he says he can already tell a little difference after just one liter.
Please pray for our sweet daughter-in-love, Stacee, and her family. Ryan, Stacee and the girls have been in Flordia for the last week visiting her mom, Diana, and step-dad, Jack. They were due to fly home this morning but late last night Jack began experiencing intense chest pain; long story short they found he had a torn aorta. They performed emergency surgery, however, he went into cardiac arrest and died this morning. This was very unexpected and, as you can imagine, has left everyone in shock.
I'm so thankful Stacee was there and had these last few days with Jack. Please pray especially for Stacee's mom, Jack's older daughter, as well as his grandchildren and great-grandchild. This is an especially hard blow in that Jack's son had died unexpectantly in a drowning accident about 6 weeks ago. Stacee's family is having a difficult time understanding why God would do something like this. And for Stacee as she continues to boldly share her comfort and peace in Christ during this difficult time.
Sunday, October 10, 2010
And so the journey began...
Three years ago yesterday (10-9-07), our journey began with a "simple" gall bladder surgery. Though the path is often treacherous and we can't see around the next bend, we rest in knowing God goes before us and prepares the way. He sees far beyond what we can see and we can trust both our earthly and eternal future to Him.
Where we are now:
We've been battling all weekend to keep Ron out of the hospital. He's teetering on the edge of dehydration, which in most cases can be addressed with increased intake of fluids, but in Ron's case is much more complicated. Due to his continued digestive issues, we have to cautiously address this in small increments because the more he takes in, the more prone he is to throw up which leads to further dehydration; causing a vicious cycle. And because he is on IV nutrition (TPN), receiving all of his nutrients, minerals, vitamins, electrolytes, etc. in a very controlled, artificial manner, we must also be very careful as to what he does take in as well as the amount....most of us need increased electrolytes, sodium and potassium when dehydrated; he does as well, but in his case, too much increase in these can tip the delicate balance and bring on severe complications.
Praise God for our fabulous Dr. A who has been in contact with us throughout the weekend (even though he is not on call this weekend...yes, he is THE BEST!) We've been able to nurse him along, avoiding a frustrating weekend in the hospital. We'll see what tomorrow holds.
Our pastor has been doing an awesome series titled "Why Church?" Why is it important to be a part of a growing, Christ-focused community of believers. He invited us to do a video interview sharing our story of God's faithfulness to His people and the joy we can have in Him in all circumstances of life. And let me just tell you, never take for granted the privilege of being a part of such a church; as well as the ability to go to church each week. We have spent so much time over the last three years unable to receive instruction from our Godly leaders, unable to worship and fellowship with our church family; yet they have been so faithful to hold us up, encourage us, and even support us financially. Thank you NRHBC family!
Back to this weekend:
I truly believe we have been under attack by the enemy who hates when God's people shares His greatness; His faithfulness with others. We've had more than just Ron's medical event thrown at us this weekend.
We received a call from Ron's mom's doctor informing us they believe her health is declining and suggesting the family meet with a social worker to initiate hospice services. Though Ron had been with her last Friday, he really felt the need to go see her despite his current medical state...not a huge deal in that it's less than a 1/2 hour away, however, this little venture served to push him to the edge.
Saturday brought on electrical issues...seems our 30 year old electrical system spontaneously fried the main breaker causing us to be without electricity for a while. Our electrician came out on Saturday and it will require more work on Monday. We're praying things will be resolved quickly, however due to the fact our system is so old and a type that is no longer legal to install; the particular type of replacement we need may be hard to come by.
Despite all these little annoyances; we praise God we are home and not in the hospital.
Please join us in praying for:
definitive direction as to how to treat Ron's current medical status
peace for the family as decisions are made regarding Mom Nordell's care
a quick (and inexpensive) resolution to our electrical issue
but mostly...that we will walk in a manner worthy of His call, so that our journey will be used to His glory!
Was reading last night in Acts 16. Verse 25 reminded me that we are to choose to praise God regardless of our circumstances. If Paul and Silas could praise and sing hymns to God after having been beaten and while confined in prison with their feet fastened in stocks, we can certainly choose to praise Him in our storms. This is our desire!
Much love,
Christie
Where we are now:
We've been battling all weekend to keep Ron out of the hospital. He's teetering on the edge of dehydration, which in most cases can be addressed with increased intake of fluids, but in Ron's case is much more complicated. Due to his continued digestive issues, we have to cautiously address this in small increments because the more he takes in, the more prone he is to throw up which leads to further dehydration; causing a vicious cycle. And because he is on IV nutrition (TPN), receiving all of his nutrients, minerals, vitamins, electrolytes, etc. in a very controlled, artificial manner, we must also be very careful as to what he does take in as well as the amount....most of us need increased electrolytes, sodium and potassium when dehydrated; he does as well, but in his case, too much increase in these can tip the delicate balance and bring on severe complications.
Praise God for our fabulous Dr. A who has been in contact with us throughout the weekend (even though he is not on call this weekend...yes, he is THE BEST!) We've been able to nurse him along, avoiding a frustrating weekend in the hospital. We'll see what tomorrow holds.
Our pastor has been doing an awesome series titled "Why Church?" Why is it important to be a part of a growing, Christ-focused community of believers. He invited us to do a video interview sharing our story of God's faithfulness to His people and the joy we can have in Him in all circumstances of life. And let me just tell you, never take for granted the privilege of being a part of such a church; as well as the ability to go to church each week. We have spent so much time over the last three years unable to receive instruction from our Godly leaders, unable to worship and fellowship with our church family; yet they have been so faithful to hold us up, encourage us, and even support us financially. Thank you NRHBC family!
Back to this weekend:
I truly believe we have been under attack by the enemy who hates when God's people shares His greatness; His faithfulness with others. We've had more than just Ron's medical event thrown at us this weekend.
We received a call from Ron's mom's doctor informing us they believe her health is declining and suggesting the family meet with a social worker to initiate hospice services. Though Ron had been with her last Friday, he really felt the need to go see her despite his current medical state...not a huge deal in that it's less than a 1/2 hour away, however, this little venture served to push him to the edge.
Saturday brought on electrical issues...seems our 30 year old electrical system spontaneously fried the main breaker causing us to be without electricity for a while. Our electrician came out on Saturday and it will require more work on Monday. We're praying things will be resolved quickly, however due to the fact our system is so old and a type that is no longer legal to install; the particular type of replacement we need may be hard to come by.
Despite all these little annoyances; we praise God we are home and not in the hospital.
Please join us in praying for:
definitive direction as to how to treat Ron's current medical status
peace for the family as decisions are made regarding Mom Nordell's care
a quick (and inexpensive) resolution to our electrical issue
but mostly...that we will walk in a manner worthy of His call, so that our journey will be used to His glory!
Was reading last night in Acts 16. Verse 25 reminded me that we are to choose to praise God regardless of our circumstances. If Paul and Silas could praise and sing hymns to God after having been beaten and while confined in prison with their feet fastened in stocks, we can certainly choose to praise Him in our storms. This is our desire!
Much love,
Christie
Sunday, September 26, 2010
Time to Regroup
Where to begin?
You know the old saying "don't judge a book by it's cover". Well, that fits Ron well. Outwardly, he looks good, however if you look inside, you'd know how awful it really is the majority of the time. And how depressing it is to deal with this day after day after day!
The last couple of months have been quite the roller coaster...the highs of promising new ideas and the lows of hopes being dashed.
My sweet hubby has had some especially "dark days". I am so proud of my guy....it takes alot for him to come out and say, look things aren't going well and I'm really struggling here. He's not a complainer; and if you ask how he's doing he will typically say ok. The disappointment of hopeful changes, along with the increased mental fatigue from resuming classes, resulted in even more physical fatigue which really did a number on him. After much prayer and conferring with doctor, decision was made to step back and regroup.
You know how you feel when you have the worst flu ever...you can hardly function, you feel like you're in a mental fog, unable to focus on anything, you have no appetite and are just bone weary...well that's what he's been experiencing. And with the exceptional fatigue he's experiencing, he's definitely been regressing...feeling weak and rundown; no appetite, stomach churning along with nausea all day every day
He admits his number one priority needs to be on getting healthy but has been at a loss as to know how to go about this. After much prayer and conferring with doctor, they agreed it would be best if he dropped his classes this semester.
Right now, the overriding concern is his lack of sleep. Poor guy deals with so much reflux he gets no rest because he wakes up all night long choking. He can't take any kind of a sleep aid as this would dampen the automatic reflex to protect his airway (gagging/choking, then bolting to an upright position to keep things from coming up). If this reflex were to be dampened, he would aspirate with the potential of developing pneumonia or even literally suffocating due to blocked airway. Remember, due to a myriad of surgeries, procedures, etc. the flap between the esophagus and the stomach that should close to keep backflow from occurring is permanently open for him.
As of last Thursday, Ron has discontinued the latest medication and has backed off on eating (other than the fabulous fajitas at an anniversary celebration for some good friends today!) to see if he can get a little bit of a break. Although the new medication has helped a little, he may yak daily for 4-5 days and then have a break for a couple of days; the side effects have been troublesome.
So, there ya have it....may be more information than you'd like; but please use it as intended; to know how to specifically pray.
I've been listening to Beth Moore recently as she has been speaking on Isaiah 32:2 :
"Each man will be like a shelter from the wind and a refuge from the storm, like streams of water in the desert and the shadow of a great rock in a thirsty land"
And my thoughts turn to each of you. Thank you for loving us; as well as your willingness to stand in the gap and be a refuge to us during this stormy time of life.
Much love,
Christie
You know the old saying "don't judge a book by it's cover". Well, that fits Ron well. Outwardly, he looks good, however if you look inside, you'd know how awful it really is the majority of the time. And how depressing it is to deal with this day after day after day!
The last couple of months have been quite the roller coaster...the highs of promising new ideas and the lows of hopes being dashed.
My sweet hubby has had some especially "dark days". I am so proud of my guy....it takes alot for him to come out and say, look things aren't going well and I'm really struggling here. He's not a complainer; and if you ask how he's doing he will typically say ok. The disappointment of hopeful changes, along with the increased mental fatigue from resuming classes, resulted in even more physical fatigue which really did a number on him. After much prayer and conferring with doctor, decision was made to step back and regroup.
You know how you feel when you have the worst flu ever...you can hardly function, you feel like you're in a mental fog, unable to focus on anything, you have no appetite and are just bone weary...well that's what he's been experiencing. And with the exceptional fatigue he's experiencing, he's definitely been regressing...feeling weak and rundown; no appetite, stomach churning along with nausea all day every day
He admits his number one priority needs to be on getting healthy but has been at a loss as to know how to go about this. After much prayer and conferring with doctor, they agreed it would be best if he dropped his classes this semester.
Right now, the overriding concern is his lack of sleep. Poor guy deals with so much reflux he gets no rest because he wakes up all night long choking. He can't take any kind of a sleep aid as this would dampen the automatic reflex to protect his airway (gagging/choking, then bolting to an upright position to keep things from coming up). If this reflex were to be dampened, he would aspirate with the potential of developing pneumonia or even literally suffocating due to blocked airway. Remember, due to a myriad of surgeries, procedures, etc. the flap between the esophagus and the stomach that should close to keep backflow from occurring is permanently open for him.
As of last Thursday, Ron has discontinued the latest medication and has backed off on eating (other than the fabulous fajitas at an anniversary celebration for some good friends today!) to see if he can get a little bit of a break. Although the new medication has helped a little, he may yak daily for 4-5 days and then have a break for a couple of days; the side effects have been troublesome.
So, there ya have it....may be more information than you'd like; but please use it as intended; to know how to specifically pray.
I've been listening to Beth Moore recently as she has been speaking on Isaiah 32:2 :
"Each man will be like a shelter from the wind and a refuge from the storm, like streams of water in the desert and the shadow of a great rock in a thirsty land"
And my thoughts turn to each of you. Thank you for loving us; as well as your willingness to stand in the gap and be a refuge to us during this stormy time of life.
Much love,
Christie
Monday, September 6, 2010
Long time no update...
...I know; but since I've started back to school (August 16) I feel I meet myself coming and going.
Ron's classes began last Monday. He is taking Algebra and English Lit and already the work is consuming a great deal of his time. It's been difficult for both of us to get back into the swing of things; actually, I'm not quite sure we're there yet!
Praise God for this three-day weekend! I took full advantage of the cooler weather to get some much-needed yard work done including trimming the shrubs; seeing this in type doesn't sound like much, but I tell ya, it was a beating! My right arm still feels like it's vibrating from the hedge trimmer and I have sore muscles in places that I never knew muscles existed! I was quite the taskmaster and even made Ron get out and help pick up the trimmings...poor guy, it wore him out!
But the highlight of the holiday was getting to spend time with our sweet girls. Oh, how we miss being with them on a regular basis!
On to the news I know you all really want...how is Ron doing? Well, we're excited to say his blood levels are staying consistent on the IV Lovenox and were just told last week that he can now go to anti-factor Xa checks every 6 weeks, yippee!!!! Even though he still has to have blood draws every 2 weeks to keep an eye on all other levels for TPN purposes; this is an encouraging step.
The new medication he began Aug 11 has helped some; he has gone a couple of different times for 5 days without yakking. WOO HOO!!! Unfortunately, this is usually followed by a spell of 3 or 4 days in a row of daily yakking. Very frustrating to him seeing as how there are no variables on the days he does or doesn't yak. It wouldn't be quite so discouraging if we could put a finger on what makes the difference. The trade off is the side effects from the medication. It leaves him feeling weaker, more lethargic than usual. We continue to remain hopeful and will take any good day we get.
We're constantly asked what we need...really, can't think of anything other than your continued prayer support and encouragement.
Specific things to pray for:
- longer stretches of time with no yakking; this is the only way his esophagus will heal
- increased strength and stamina
- consistent, dedicated time in prayer and Bible study; as life gets busy, this becomes the first thing to be neglected
- for my attitude; as I adjust to being back at work along with all the other responsibilities of being the primary caregiver and head of household duties; when I'm tired, I can get quite grumpy and say things I wish I could take back. For instance, after an extremely long week trying to juggle work, home, etc. I was frustrated with it all and blurted out "I want my husband back" Oh, how I wish I could take back those words! They were very hurtful and left Ron in quite a funk for a couple of days. I know he badly wishes to be his old self and would give anything to be able to do the things he used to do (even mundane household jobs) and to have me voice this was absolutely awful! Pray I will keep my tongue in check and when I'm feeling overwhelmed, I will vent to someone (anyone!) else.
(I'm sure I must have burst a few bubbles here, I know most of you think I'm so sweet, kind, compassionate,...but I tell ya, God sees my heart and knows what I'm really all about. What? No burst bubbles? Was it just my wishful thinking that someone thought I was all these good things? Haha) - And the biggie....as the new school year begins, so does our new insurance year... which means starting over with meeting all new deductibles, as well as increase in our premiums and increase in all co-pays. We know we'll have all Ron's maintenance medications, TPN and routine blood draws, but an otherwise a medically uneventful year would be fabulous!
So there you have it; the good, the bad and the ugly. It's humbling (and often embarrassing) to be so transparent but know this is what God has called us to and anything less would be lack of obedience on our part. Thanks for loving us in spite of who we really are!
Much love,
Christie
"And God will generously provide all you need. Then you will always have everything you need and plenty left over to share with others." 2 Cor 9:8 NLT
"What's more, I will be with you and will protect you wherever you go...I will be with you constantly until I have finished giving you everything I have promised." Genesis 28:15 NLT
"I said to the Lord, 'You are my Lord; apart from You I have no good thing' " Psalm 16:2 NIV
Wednesday, August 18, 2010
Half Year Birthday!
Is it really possible? Yes, our sweet girls are 6 months old today!
The pictures below were actually taken at 5 months, but I tell ya they just keep getting cuter and more fun by the day!
Sweet Ella~
The pictures below were actually taken at 5 months, but I tell ya they just keep getting cuter and more fun by the day!
Sweet Ella~
The Divine Miss M~ 
Double the blessings! Double the fun!
I may be a little biased...but aren't they the most adorable things you've ever seen????
Wednesday, August 11, 2010
Plan B
I'm sad to report the increase in the new medication did nothing but cause Ron to sleep...ALOT! Poor guy was totally out of it, sleeping off and on in his recliner throughout each day (even though he had slept 12-14 hours the night before!) Yet the daily yakking continues. Dr. A had him discontinue the Baclofen Monday afternoon, however he will continue to take the Gaviscon (seaweed-based antacid), along with his other maintenance medications.
Today began Plan B; a medication named Bethanechol. Bethanechol is typically used for treatment of urinary issues; however, is also found to stimulate the GI tract to increase motility. Dr. A also says it may cause confusion, bladder spasms, muscle spasms, as well as a host of other COMMON side effects. He really wanted Ron to start on it while I am still on summer break so I can keep an eye on him. YEEHAW!
I'd be lying to say we weren't disappointed in the lack of any progression while on the Baclofen; however, we remain confident in our belief that God does indeed have a plan, and He IS at work as we expectantly wait.
Christie
Today began Plan B; a medication named Bethanechol. Bethanechol is typically used for treatment of urinary issues; however, is also found to stimulate the GI tract to increase motility. Dr. A also says it may cause confusion, bladder spasms, muscle spasms, as well as a host of other COMMON side effects. He really wanted Ron to start on it while I am still on summer break so I can keep an eye on him. YEEHAW!
I'd be lying to say we weren't disappointed in the lack of any progression while on the Baclofen; however, we remain confident in our belief that God does indeed have a plan, and He IS at work as we expectantly wait.
Christie
Thursday, August 5, 2010
New Plan of Action
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
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
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.
Thursday, May 27, 2010
Anchoring Deep
My dad loves to tell how when I was a little girl I wasn't one to shy away from adventure. I was the one who would try anything and everything, especially if it involved doing something daring with him...motorcycle stunts, skiing on his legs, hanging onto his neck as he swam when I was too young to swim on my own. Preparation for the adventure of the roller coaster life I'd live as an adult?
I've been working on this post for several days now, but it's been difficult seeing as how I tried to break my fingers, wrist, hand, arm on Monday doing something totally stupid. That awful P-word always gets me in trouble. I was sure I could do something totally out of my league; I'm self-sufficient...I don't need help. HAH! Praise God I "only" hyper-extended tendons in my right hand and forearm. The pain and lack of ability to do much of anything with that hand (including type, so please overlook, typos, etc) are a constant reminder that I am NOT superwoman and need to get over myself and ask for help when I should. As Proverbs 16:18 says "Pride goes before a fall"; in my case, LITERALLY!
Anywho, on to the real update:
Over the last couple of weeks/months Ron's had a few little things crop up; nothing horribly bad, but enough to make me a little nervous that something big was brewing.
It started with labs being slightly off (phosphorous and sodium), no big deal...tweaked TPN. Slight edema (swelling) in legs...not uncommon; yet new labs show slight dehydration, hmm...not quite the norm since swelling usually means excess fluid. Next, PICC (less than a month old) won't draw...ugh! Edema continues despite changes and is actually worse, especially in his left leg...very noticeably. And, of course, he has the chronic indigestion, reflux and yakking.
Dr. A was concerned enough he decided it was time to come in for a face to face consult so we could come up with a new plan of action. His concern is that with all the tweaking things should be much improved, however it's only gotten worse. He's especially concerned this could point to a blood clot, since swelling is increasingly predominant on the left side. So, Dr. A has ordered an ultrasound of Ron's lower extremities and his abdomen, which he will have done today. And what if there is indeed a clot? The only treatment option is blood thinners, specifically Lovenox. This is where we both start to get nervous. We all know would a rough time he's had on the Lovenox.
Ron's situation is always a delicate balance; we are constantly adjusting medications, tracking input and output and monitoring activity. He basically lives with constant infection in his digestive tract, which is a major contributor to the indigestion, reflux and yakking; and just like the rest of us; any kind of infection causes overall yucky feeling as well as weakness, lack of motivation and general lethargy. He takes an antibiotic that is specifically for bacterial infections in the GI system, but can only take it for a week and then has to be off of it for a couple. When he's on it, things are much improved; when he's off...things slowly get worse. This poses another concern for Dr. A; Ron becoming immune to the antibiotic, so he is going to swap the antibiotic for a stronger one that he'll take 7 days, be off 7 days then back on for the next couple of months.
I have to confess; I've had a couple of meltdowns over the last few weeks that left me feeling quite melancholy for a few days. All of these little health issues, along with spending a night with Ron's dad in the ER (he was admitted for 3 days but is doing ok now); at times just seems neverending and quite overwhelming.
Just when we feel there's nothing left to be stripped of; we're hit with something else. I think the icing on the cake was being denied by Presby as a charity case and finding we will owe them a substantial amount of money from Ron's three hospitalizations last fall. It was quite a shock, since they have always approved us in the past but for some reason, we no longer meet their criteria. UGH!
On a good note, Ron finished his semester very strong; making an A in his Anatomy & Physiology and a B in Math. I'm so proud of him! He was also able to ride along with his golfing cronies for the back nine a couple of weeks ago. He played a couple of holes (even birdied one!). Then, May 16th we had a big early 91st birthday bash for Ron's Mom, which included 34 out of 42 immediate family in attendance. Great time together.
Also, in the craziness of the last couple of weeks of school, we have been shopping for our new stovetop and oven which are being generously provided by some very special people. Our house being 30 years old has made it quite the challenge to find anything that will fit it's current cutout dimensions, therefore will need some modification work done before installation. But I'm not complaining...we are incredibly blessed by this couple's generosity and are looking forward to our new appliances.
Yesterday, we celebrated our 31st anniversary. Well, I can't say we celebrated; I don't think me eating leftovers, Ron yakking and both of us being up most of the night due to AC going out is much of a celebration...we memorialized? We plan to do something next week, when life is a little less chaotic and we can really enjoy a date.
Sorry, I don't want this to turn into a pity party. As I said, sometimes it just all seems overwhelming. We really are doing ok. Although we wouldn't be without the firm belief and experience in knowing God is on His throne; nothing takes Him by surprise and He cares about the details of our lives and does have a plan.
"Against all hope, Abraham in hope believed...he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what He promised" Romans 4:18
Hope's power is that we have the energy and desire to go on living because we believe something better is coming.
"We have this hope as an anchor for the soul, firm and secure." Hebrews 6:19
What does an anchor do? It keeps the ship on course when wind and waves rage against it. The anchor of hope is sunk securely in Christ.
As you can see, we have much need of prayer at the moment; and we covet yours. Thanks faithful ones!
Much love,
Christie
I've been working on this post for several days now, but it's been difficult seeing as how I tried to break my fingers, wrist, hand, arm on Monday doing something totally stupid. That awful P-word always gets me in trouble. I was sure I could do something totally out of my league; I'm self-sufficient...I don't need help. HAH! Praise God I "only" hyper-extended tendons in my right hand and forearm. The pain and lack of ability to do much of anything with that hand (including type, so please overlook, typos, etc) are a constant reminder that I am NOT superwoman and need to get over myself and ask for help when I should. As Proverbs 16:18 says "Pride goes before a fall"; in my case, LITERALLY!
Anywho, on to the real update:
Over the last couple of weeks/months Ron's had a few little things crop up; nothing horribly bad, but enough to make me a little nervous that something big was brewing.
It started with labs being slightly off (phosphorous and sodium), no big deal...tweaked TPN. Slight edema (swelling) in legs...not uncommon; yet new labs show slight dehydration, hmm...not quite the norm since swelling usually means excess fluid. Next, PICC (less than a month old) won't draw...ugh! Edema continues despite changes and is actually worse, especially in his left leg...very noticeably. And, of course, he has the chronic indigestion, reflux and yakking.
Dr. A was concerned enough he decided it was time to come in for a face to face consult so we could come up with a new plan of action. His concern is that with all the tweaking things should be much improved, however it's only gotten worse. He's especially concerned this could point to a blood clot, since swelling is increasingly predominant on the left side. So, Dr. A has ordered an ultrasound of Ron's lower extremities and his abdomen, which he will have done today. And what if there is indeed a clot? The only treatment option is blood thinners, specifically Lovenox. This is where we both start to get nervous. We all know would a rough time he's had on the Lovenox.
Ron's situation is always a delicate balance; we are constantly adjusting medications, tracking input and output and monitoring activity. He basically lives with constant infection in his digestive tract, which is a major contributor to the indigestion, reflux and yakking; and just like the rest of us; any kind of infection causes overall yucky feeling as well as weakness, lack of motivation and general lethargy. He takes an antibiotic that is specifically for bacterial infections in the GI system, but can only take it for a week and then has to be off of it for a couple. When he's on it, things are much improved; when he's off...things slowly get worse. This poses another concern for Dr. A; Ron becoming immune to the antibiotic, so he is going to swap the antibiotic for a stronger one that he'll take 7 days, be off 7 days then back on for the next couple of months.
I have to confess; I've had a couple of meltdowns over the last few weeks that left me feeling quite melancholy for a few days. All of these little health issues, along with spending a night with Ron's dad in the ER (he was admitted for 3 days but is doing ok now); at times just seems neverending and quite overwhelming.
Just when we feel there's nothing left to be stripped of; we're hit with something else. I think the icing on the cake was being denied by Presby as a charity case and finding we will owe them a substantial amount of money from Ron's three hospitalizations last fall. It was quite a shock, since they have always approved us in the past but for some reason, we no longer meet their criteria. UGH!
On a good note, Ron finished his semester very strong; making an A in his Anatomy & Physiology and a B in Math. I'm so proud of him! He was also able to ride along with his golfing cronies for the back nine a couple of weeks ago. He played a couple of holes (even birdied one!). Then, May 16th we had a big early 91st birthday bash for Ron's Mom, which included 34 out of 42 immediate family in attendance. Great time together.
Also, in the craziness of the last couple of weeks of school, we have been shopping for our new stovetop and oven which are being generously provided by some very special people. Our house being 30 years old has made it quite the challenge to find anything that will fit it's current cutout dimensions, therefore will need some modification work done before installation. But I'm not complaining...we are incredibly blessed by this couple's generosity and are looking forward to our new appliances.
Yesterday, we celebrated our 31st anniversary. Well, I can't say we celebrated; I don't think me eating leftovers, Ron yakking and both of us being up most of the night due to AC going out is much of a celebration...we memorialized? We plan to do something next week, when life is a little less chaotic and we can really enjoy a date.
Sorry, I don't want this to turn into a pity party. As I said, sometimes it just all seems overwhelming. We really are doing ok. Although we wouldn't be without the firm belief and experience in knowing God is on His throne; nothing takes Him by surprise and He cares about the details of our lives and does have a plan.
"Against all hope, Abraham in hope believed...he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what He promised" Romans 4:18
Hope's power is that we have the energy and desire to go on living because we believe something better is coming.
"We have this hope as an anchor for the soul, firm and secure." Hebrews 6:19
What does an anchor do? It keeps the ship on course when wind and waves rage against it. The anchor of hope is sunk securely in Christ.
As you can see, we have much need of prayer at the moment; and we covet yours. Thanks faithful ones!
Much love,
Christie
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